Our Cancer Archives

Our Cancer Archives…by Laurie Singer Sievers

3-11-11
3:51 PM
A Fallen Warrior

Oh Brigette,

How hard you fought to live.  We would hear about your fierce strength from Al every now and then and we would pull with you.  Many of us know about backing-up our cancer fighters.  I’m sure your family did what we had to do with the hope that it meant one more day of life.

Every morning, I would whisper to myself, a little message to Leroy…”please live.” He tried so hard to do that, just like you did.

We are thinking of your family now.  I hope they will lean on each other for the support, care and love they need to get through this hurting time.  This community has been there, many times.

The grief is cancer’s whiplash.

Rest in peace dear girl.

Words that should not be said, to a 17 year old.

Comments:

Sasha Degaspar (Dolly)
3-12-11
8:42 PM

I had to come back and post again. My heart hurts for Brigett’s family………..Rest in peace dear Brigett….

Sasha Degaspar (Dolly)
3-12-11
8:35 PM

My prayers go out to Brigette’s family……..I’m praying for them

Al Cato (tennisbum)
3-12-11
6:21 PM

Thank you all for your kind postings for Brigette and her family. Today is her funeral. The emptiness and loss will be overwhelming. She and her mom, Janice, lived, yes lived for many months at one of the local children’s hospitals. No rest, no respite, no relief…..Janice persevered. Anything and everything that Brigette needed, Janice fought to get it and fortunately the hospital provided it. They have no money, no insurance and they were treated as if they had unlimited resources. Family, friends and strangers came forward to help. It was something to behold when the generosity of the human spirit reached out to those who had nothing. It was the best of the human spirit. It reaffirmed my belief in the fact that there are so many wonderful people on this planet and in this country and in Atlanta.. Many of you know of what I speak. It is illustrated here daily in a very small sampling of people It causes me to wonder why does it take a tragedy to bring out the best in all of us. I have no answer. Tonight, please say a prayer for Janice, Brigette’s brother and sisters…..this night will be painful beyond description. She is gone..k

Kathie Scott (KTS)
3-11-11
8:34 PM

It broke my heart to read Al’s post about Brigitte…a parent should never have to go through this. She had so much living to do.

3-10-11
4:17 PM
The “Hope” Report

We miss them every day. Cancer took their lives and we ache because of it. We stood by watching as they fought will every healthy cell in their bodies to live another day.  We were in awe of their bravery.

Leroy signed a piece of paper that allowed the researchers at Hopkins to use slices of his colon cancer, hoping that these scientists would see something that would lead to a discovery and give the next cancer patient more life.  He’d say “use me” and he meant it. It was important to pay-it-forward.

Stop the beast in it’s tracks.

Well, it looks like our loved ones did their jobs.  According to the CDC and National Cancer Institute, cancer survivors in this country are increasing by the hundreds of thousands a year.

The Centers for Disease Control and Prevention announced today that 40 years ago, the number of cancer survivors was about 3 million.  That increased to 10 million in 2001 and increased again to 11.4 million in 2006.

Women diagnosed with breast cancer made up the largest share of cancer survivors, at 22 percent…men with prostate cancer were next, at 19 percent.

The survivor stats came from anyone who had a cancer diagnosis…including successfully treated patients, those who may be dying from their cancer or those still in treatment.

This is a good thing.  It should be dubbed the “hope” report.  To me, it says they did it…our loved ones did it. They gave their lives for this report.

They didn’t survive, but they sure do live on.

Comments:

betty obst (bettyoops)
3-11-11
8:32 AM

I have seen the incidences of survival rising over the years and am hopeful that some day we may be entirely free of this terrible disease. But, as Al indicates, it’s sometimes hard to hold onto that glimmer of hope when it strikes so close to you. I am so sorry to hear that Brigette lost her struggle but with Al, I take comfort that she is with God now and knows no pain. My prayers continue for Brigette’s family and friends and all who are touched by cancer and other life threatening situations.

Brady Merrill (SAOC)
3-11-11
7:51 AM

All, I stand before you today as a survivor. I stand here today because of those who lost but payed it forward so that someone like me could survive.

Advances in surgery, chemo and radiation all possible due to the ‘balances carried forward’.

I am eternally grateful for their ‘payments forward’ and their ultimate sacrifices.

Ned Lemon (Ned_L)
3-11-11
6:45 AM

I can remember when children suffering with leukemia had little chance of survival. I have been praying for Brigette every day since Stan brought us her story. I can’t picture her and I did not know her. Life is so precious and time moves so fast. I was sitting in my car after a late lunch yesterday(Thursday)and I took a moment to reflect and to pray as I watched the high waters sweeping down the Scioto river. There was the slightest hint of spring in the air- despite the damp,rainy weather. Brigette’s saga came to mind and I thought of the rough stream her an her family were navigating. -She is out of the storm, I know she is at peace. My daughter suffered from a serious illness and I know some of that particular horror. My daughter is a beautiful and delightful young woman-she really is. We come in contact with a lot of people in our daily journey. We need to take a moment to consider we don’t really know their story. We need to take care of each other. God bless children with cancer and may their families be granted strength and peace.

Kathie Scott (KTS)
3-10-11
7:02 PM

I’m so sorry Al. To lose a child must be the worst thing one can have happen. We buried my mother-in-law today. She was 82 and had multiple medical issues but I was so comforted when, a few days before she died, she said Jim came to visit her and told her he would be back. Maybe he can take your Brigette into the fold because if there’s one thing he knows how to do it’s raise girls!

Al Cato (tennisbum)
3-10-11
6:07 PM

I am big believer in Hope. It is a very important element for the human spirit to have. With that said….sadly, today at 2:15 pm a young 17 year old girl named Brigette Barron died from leukemia……yes leukemia…..one of those cancers we are supposed to be able to cure. She fought for over a year…bone marrow transplant from one of her sisters…..it failed and the chemo failed and she was too tired, bone weary and had lost the spark…the will to fight any longer. She leaves a brother, 2 sisters, her Mom..single Mom and lots of aunts, uncles and cousins. How sad…really sad this is. She clung to Hope for as long as she could but the “little light of Hope” was extinguished by the darkness. She is at peace and suffers no more but the suffering for her family remains….a giant hole in their hearts and it will never be filled. I take heart to know that she was a believer in Jesus Christ and her soul resides with her Heavenly Father. As you say your prayers tonight, include the family of Brigette Barron in them, please. Many of you know the pain they are feeling and the profound sense of loss. I still believe in the power of Hope and always will but this day is just too sad to think about it now.

3-9-11
4:14 PM
Step by Step

Steps…cancer steps.

They pretty much mirror the way we start out in life.  When we’re infants, we get our balance by crawling on all fours.  We get a feel for the ground beneath us by moving a few feet forward, or in my case, I crawled backwards. Then just stood-up and walked. That’s the way my mom and dad remembered it.

Regardless of going forward or backwards, we took baby steps in the beginning and once we became steady on our feet, our steps took us places we needed to go.  And so it goes with cancer.

After hearing the words, “You have cancer,”  you get weak in the knees, it takes time to stand-up straight again and it takes even longer to find your footing again.  We go through an orientation for chemotherapy, we get stronger.  We begin treatment, more steps in a direction we’ve never taken, but we begin to learn the ropes of cancer.  Our steps and our strength gets stronger still.

Now we’ve become veterans of this battle.  We can “walk strong” into just about any scenerio.

Another lesson we’ve learned from our cancers…step by step.

Comments:

Kathie Scott (KTS)
3-10-11
7:39 AM

Every step we took in cancer world, I thought, was the worst yet but it seems they just kept getting worse. You think after you hear the words and the blood drains out of you and it feels like you are in the body of someone else that it can’t possibly get any worse….so wrong. So many chances to learn things you never wanted to know. I’m still taking baby steps.

Sasha Degaspar (Dolly)
3-10-11
6:17 AM

Yes, we are veteras of this battle. When John was ill all I could remember was taking one day at a time, however, always thinking of the future and how I was going to go on living. But, I guess somehow we find the strength to go on. Please pray for my friend…………..her husband has been struggling with lung cancer for a year and he is coming to the end of his journey………let’s continue to lift one another.

3-8-11
4:00 PM
We Just Have to Go On

Some days it’s tough to find the karma isn’t it?

I was up at the Cancer Center yesterday and walking through the lobby I noticed so many weary eyes.  These tired, sad eyes didn’t belong to patients, at least they didn’t appear to be patients.  To me, they looked like the caregivers and there were so many of them with the same drawn look that comes with caring and cancer.

So, with that in mind….here are a few words that kept me going when it was tough to put one foot in front of the other…

I can’t go on.

There is no way I can go on.

I. can not. go. on.

I don’t want to go on.

I just can’t go on.

So, I guess I will get up and go on.

Caregivers, I salute you.

Comments:

Kathie Scott (KTS)
3-9-11
7:59 AM

During some of the most difficult days with Jim, I had a very young co-worker who had been through a lot with a disabled child. On one of those awful days she said “when you think you just can’t take one more thing you will get a good burst”. For the most part I found that to be true. I still have days like that dealing with the grief but I have a little more control over them. Nobody works as hard as a caregiver.

Brady Merrill (SAOC)
3-8-11
7:07 PM

Amen, Laurie, one step after the other, just one more step, then another. I was and am awed by you caregivers, I hope those now in ‘crazy land’ can find the strength to always make that next step.

Al Cato (tennisbum)
3-8-11
6:02 PM

When you get to the end of your rope……tie a knot and hang on!

3-4-11
5:49 PM
The Seven Dwarfs in Cancer World

Here’s something to ponder over the weekend.  A friend from cancer world brought up an interesting scenerio today. How cancer relates to Snow White and the Seven Dwarfs.

She was really just talking about the names of the Seven Dwarfs and how they connect to cancer.

So I thought you’d enjoy the comparison.

Happy.  Only if you’ve just heard the term N-E-D and you’re told to go have a ‘Happy’ life.

Sleepy.  This one we thought fit the caregiver best.  It’s a day after day emotional roller coaster that doesn’t offer up much rest, hence ‘Sleepy’ applies.

Grumpy.  Yup, this really doesn’t need much explanation.  After all the different treatments, surgeries, up and downs of fighting the beast, you’ve earned the right to be ‘Grumpy.’

Dopey.  Well, with all those meds running wild in the body, it’s only natural to feel a little ‘Dopey.’

Bashful.  Definitely can not be ‘Bashful’ fighting cancer.  You need an advocate to speak up and help guide your treatment and care. ‘Bashful’ is not a word that exists in cancer world.

Doc.  Probably the easiest to fit into a cancer slot for obvious reasons.

Sneezy.  The toughest to connect to cancer.  So we went out on a limb with ‘Sneezy’ and used the action, matched it to the reaction and just left it at ‘God Bless You.’

That seemed to work.

Comments:

Sasha Degaspar (Dolly)
3-5-11
7:21 AM

Thank you Laurie…………very nice….still lifting

3-3-11
3:25 PM
Playing the Numbers

It’s a numbers game when you live in the bone marrow transplant world.  My friend Bruce is living in that world.  Almost a year ago he found out he had leukemia.  In fact it was a leukemia with a FLT-3 twist.  It made the finding even more of a challenge.  He had a bone marrow transplant four months ago and according to his doctors and nurses who see him on a regular basis still, he’s doing really well.  It’s all about his numbers. When he visits the Cancer Center, the first thing he does is give blood.  It’s not a donation of blood. It’s a trip to phlebotomy so his blood levels can be checked to see what’s going on inside that body of his.

Bruce is a trooper.  He hears the words, “you’re doing great.”  But, truth be known, he feels lousy.  It all part of the trek he’s on to get back to being Bruce again.

What we go through in cancer world to get back to being ourselves. I’m amazed every time I meet another citizen of cancer.  I was lucky to meet and talk with a young mother of four recently who is a stage 4 colon cancer survivor.  For her, it was in the family genes, so she was diligent to start colonoscopy check-ups early.  With all of her awareness and  being pro-active, cancer found it’s way into her colon, between check-ups. So, with her faith in both God and a team of doctors, she stepped up and fought back.  She says her scars remind her every day of what it’s like to get back to life.  Two years of NED.  And when she has her check-ups, her numbers speak volumes too.

In cancer world, we keep track of dates.  Discovery date, surgery date, chemo dates.  We count the days when radiation will end.  How many days, weeks, months or years were the letters NED next to our names on the chart?  Life dates and death dates.

Cancer…it’s just a numbers game.

Comments:

Al Cato (tennisbum)
3-3-11
6:44 PM

It certainly is a numbers game and the numbers we pay attention to at each visit to the oncologist or lab are so much more important than the lottery. The lottery is about money!! The numbers we want and pray for are about life!!!! Not a choice which we want. Hope Bruce is doing well. Even with the bone marrow transplant, it still is dicey as to his prognosis. Best wishes.

3-1-11
6:05 PM
Spring

It’s official….today is the first day of Spring, meteorologically speaking anyway.

In my town, it was a blue sky day from sun up to sun down.  The few clouds that did drift into view are now a whispy orange color as the sun sinks in the Western sky.

I have green shoots reaching up, out of the soil.  Crocus and daffodils that are in a hurry to burst out in full bloom.  I’m always in awe of this time of year. One day it’s like this,still a little chilly, but so fresh and clear and then bam, Old Man Winter,  refuses to pack up his bag and drops a few inches of snow on the front steps, just to show us who’s boss.

More than anything, this yearly awakening gives me new hope.  I admit, during the long days of winter,some times memories weigh me down.  What cancer took from me, weighs me down. The gray skies mirror my gray mood.  I get sad and I miss Leroy and there isn’t a bright blue sky or a fresh breeze to shake me out of the funk.

But now I know it’s out there.  I saw it today.  I felt it today.  I lived it today.

It’s a new beginning, all over again.

February 2011

2-28-11
4:10 PM
Dream On

We start out, most of us any way, hoping to have a productive life.  Growing up we dream big dreams about what we’ll become when life allows us to make those choices.  The big dreams don’t necessarily mean, big money or big jobs.  They are big dreams because they guide us to become strong, solid people who are ready to march through life.

WE never see it coming do we?  That “You have cancer” moment that pops the bubble.

We are doubled over by the lack of air in our lungs when we hear those words. But, because we are who we are, we rally the best we can, take a deep breath, refocus as best we can and as Al said, we reforge ourselves.

We take on a new shape with new meaning.  It’s the only way to get through this isn’t it? And, we learn so quickly that our new shape will change again, depending on cancer’s grip. After a few of these “shape-changers” we begin to realize we’re not quite as sure of ourselves as we once were….just another way cancer invades our space.

That’s why we need each other so much in this community.  We need to hold on to each other…we can’t let the beast manipulate us the way it has.  Those dreams are still inside each of us.

We need to find the fresh air and breath again.

Comments:

Dianne West (Dianne_in_Nevada)
3-5-11
4:40 PM

Oh Betty, what wonderful news. I, too, believe in miracles and I’m so very pleased to read of yours and Bill’s.

betty obst (bettyoops)
3-4-11
7:13 PM

Thank you Sasha… and thank you, Al, for putting into words exactly as I was thinking. I too do believe in miracles…just never expected to get one for ourselves. I agree so much that it doesn’t matter HOW something happens, as long as it is what we need and it happens!! And I have and do see the results…and am so grateful!!

Al Cato (tennisbum)
3-2-11
8:37 AM

Thank you Betty for sharing. It is often that we try to figure out “what just happened…..could it be a miracle” . I’d say that you just receive the ug as it was intended and bask in results of the gesture. Regardless, it may be a coincidence or it may divine but you have the proof that it did happen and you see the results. I choose to believe that there are miracles (unexplainable events based upon today’s knowledge and facts) that do occur everyday. We often miss them or choose to ascribe some other circumstances to this happening. Best wishes as always to you and your husband.

Sasha Degaspar (Dolly)
3-2-11
7:41 AM

You are always right on target Laurie. Dear Betty…….I admire your strength…….still lifting

betty obst (bettyoops)
3-1-11
11:24 PM

So many triggers today in this message…jumping all around..making me think. We’ve been through a really tough 4+ years now, what with our daughter’s diagnosis, treatment and passing then my husband’s diagnosis and treatment. I haven’t spoken about this before, but last Easter, Bill was almost at the end of the line; he had stage 4 cancer that with mets to the liver and was receiving very aggressive treatment that was taking quite a toll on him. He dropped down to about 120 lbs, was literally skin and bones, no energy, no strength, almost no hope. We made the decision to stop treatment because we really felt he couldn’t handle any more. On Easter morning I was ill but Bill felt good enough to go to breakfast at one of our favorite places. As he left that morning, the owner (female) came running out behind him, grabbed him and gave him a big hug. He was pleased and thought it was for Easter. About 3 weeks later, Bill was beginning to eat better and we went to this restaurant again. We spoke with the co-owner (husband) and Bill told him he felt better and jokingly told him that it was due to Jeannie’s hug! on Easter day. Her husband told us that the night before Easter, they were at their church and had gone forward to greet a young black missionary who had just spoken. As he approached Jeannie and took her hand, he put his hands on her shoulders and set her back a step…then he reached forward and hugged her and told her “woman…. you are going to heal someone!”. Apparently that was what had moved her to hug my husband the next day. To make a long story short, Bill’s subsequent scans have no shown no evidence of the tumors or any new growth. He has progressively gotten stronger, regained his lost weight and has so much more energy. He is feeling so good that the other day he said he hadn’t felt this good since prior to his diagnosis. Naturally, we are elated with his progress….we are admittedly also struggling to understand this and it’s connection to Jeannie’s actions. AND…as triggered by these messages, we are also almost AFRAID to hope again…. Each day it seems as though this dreaded cloud in our lives may have really passed him by…. and yet we worry still. At this point we are both truly grateful for the past 11 months of greater strength, better health and a good, deep, comforting peaceful time. Neither of us really expected that he would have been here with us for this past Christmas. And yet here he is…. and we continue to push down the fear that perhaps it’s only temporary. We truly are manipulated by this terrible disease…. as I am sure that others are with other diseases and similar life problems. Gratitude, hope, joy are all a part of our lives again…yet, we keep those fingers crossed and keep those prayers ongoing. Thank God for each precious day we have in our lives and the ability and strength to live life to the fullest, whatever the circumstances.

Al Cato (tennisbum)
3-1-11
8:55 AM

Dream On…..your post today triggered a thought that I had not really focused on before even though it is obvious. Uncertain…not sure..hesitant….words and feelings that come along with the cancer diagnosis that are not talked about much. But they are very real and omnipresent even when they are not acknowledged consciously. Sadly and truthfully the beast does manipulate us with its stealth. It causes us to think and feel differently and perhaps even live differently. I think specifically about two families that I know and two little girls, one 7 and the other is 17, with leukemia. Their hopes and dreams have been altered radically from what they once were and now are focused on how to get through this day and then tomorrow. Sickness, suffering, pain and misery have replaced all of the wonderful visions and plans that the parents once had for their child.The parents have gone from school, kids activities, hair and nails, clothes, play dates, cell phones and tweets and texts to the issue of the day as presented by the challenges of cancer…air out of their balloons? You betcha. As we are all ever hopeful, one day NED will visit and never leave and they will be able to breathe again. But as they refresh themselves and give Thanks, the families’ view of life has been forever altered. Even after some years have passed uneventfully and in the darkness of night, the thoughts of “what if” will resurface and cause a very restless night. Cancer still does manipulate us all in such subtle ways even after NED has been our companion for some years. We are changed forever.

2-25-11
5:26 PM
Soldiers

We are all soldiers in this battle aren’t we? Even those of us who have been to war, lost our loved ones and still carry the scars of the fight.

I’ve talked to people this past week who look like just regular folks. Nothing on the outside suggests they have been a part of the battle we call cancer.  They walk and talk like anyone else.  But a few sentences into the conversation and their story starts to unfold.  Before you know it, they’ve shared how cancer invaded their life.  How it changed everything.  How they are different now than B.C.

WE don’t wear uniforms.  We don’t have medals or stripes on our clothing.  But we sure have laced up our boots and maneuvered through some brutal battles.

I wouldn’t call us hero’s.  We just did what we needed to do. Now it’s back to civilian life..that’s the hard part of serving in a war.

Comments:

Nan Holmes (BigMailbox)
2-28-11
11:31 AM

A little over a week ago, I saw a woman in Sam’s who had once worked there and was such a delightful person. Immediately, I realized that her breast cancer had returned or morphed into something else. She looked very frail, with a pink knit hat perched on her hairless head. Then on Saturday, I saw her obituary and wished I had spoken to her. I hesitated because she was talking to someone else. We just never know what tomorrow holds.

Kathie Scott (KTS)
2-26-11
8:06 PM

I attended the funeral today of a lovely, gracious lady who had many health problems and one of them was cancer. She left behind her husband of 58 years, a daughter, grandaughter and many friends to mourn her. God speed to you Miss Mary. Her family will wear the scars of the battle forever. Her husband is our chaplain at work and he was such a tremendous help during Jim’s illness and hospitalizations. They became friends eventhough there was a 30 year age difference and when Bill had hospital presentations Jim was often his computer geek so they would travel the halls sharing a walker sometimes because they each just took it in case the other needed it. I found myself reliving Jim’s funeral during the service and barely able to contain myself at times. I hope I can provide him the comfort he has given me. Heroes.. not by choice.

Ned Lemon (Ned_L)
2-26-11
7:07 PM

These battles are fought deep in the heart.

Al Cato (tennisbum)
2-25-11
6:56 PM

Hero = everyday person who does extraordinary things in the face of an adversary who most times has the upper hand. Here on this blog are lots of hero’s even if each one doesn’t think of themselves that way. In the heat of battle, you don’t think….you react and you react again and again until you can take a break. Then, as we know in our world, the battle is rejoined again and then again. Each person is on auto-pilot by this time…you know what must be and how it must be done to make it through each day. Friends often don’t understand that it really is like fighting a war for which we’ve not been trained. We’ve learned “on the fly” and we adapt to each situation and we learn from our mistakes so that we don’t repeat them. Sometimes thereis a “cease fire”……NED comes to visit for however long it may last. But most of us know, we’ve not won the battle much less the war. So we put on our warrior faces once again and wade into the next battle. Never flinching, always moving forward, always giving our all until there is no more to give…..and then in the depth of the human spirit, we reach down to places we never knew we had and we soldier on. I know some people are not comfortable with the soldier and war analogy. I am. I don’t know how else to relate to our battle against cancer. Hero’s are everywhere in our world. They never think of themselves in that way but they are. We need to acknowledge them and praise them so that others will have a template to use when they are faced with their battle with cancer. Can we ever go back to our former lives, BC? I don’t think so. Our lives may be less intense but we’ve each been forged in the heat of battle so we will never forget. Perhaps our roles can be different but nevertheless we should help others along the way so that we “pay it forward”. It would be a shame to not share what we’ve learned with others and we will then honor the memory of our loved ones in a very profound and personal way. May God bless all the hero’s here at Our Cancer.

2-24-11
6:06 PM
“Voices of Colon Cancer”

I’m baaack…No vacation for me, no, I’ve been up at the Kimmel Cancer Center working on some projects that will hopefully help more cancer patients and their caregivers.

March is just around the corner and that means colon cancer awareness month. The folks at Hopkins will be a part of a big health fair in Baltimore around the middle of the month and they will have a booth dedicated to some “Voices of Colon Cancer.”

Since that is a cancer close to my heart, because it was Leroy’s primary cancer, it was an honor for me to be a part of putting together the “voices” who will speak from all sides of colon cancer.  Dr. Luis Diaz, who brings his knowledge and aggressive treatment protocol to his patients suffering from colon cancer, Isaac Kinde, a researcher working on new ideas to test for colon cancer, Mary Eve Brown a dietician who educates us all on keeping our colon’s happy and healthy and Ivelisse Page, a colon cancer survivor…all are strong voices, with strong messages about this bad cancer.

I was happy to learn that research and treatment of this cancer is moving forward.  So many more successful outcomes…lives extended….lives with quality and meaning.

I admit, it’s a little bittersweet.  I find myself saying “if only” when I hear about the progress but I know so many who are living with colon cancer now, will benefit.

That’s the important part.

Comments:

Nan Holmes (BigMailbox)
2-25-11
6:01 PM

As the wife of a colon cancer survivor, I love good news about this bad cancer. And may the “Voices of Colon Cancer” remind people of the importance of regular colonoscopies (sp?).

Al Cato (tennisbum)
2-24-11
7:05 PM

Good for you Laurie. There are so many people across this country who are doing what they can to help patients and caregivers fight the beast regardless of the type of cancer. There is still not enough being done but all of us can only do what we can in our sphere of influence. Supporting cancer patients and caregivers is close to my heart ’cause I know first hand what a battle it is just to try to have a day when cancer is not the priority of the day. On March 12th here in Atlanta, St. Joseph’s Hospital, I place I know well, love and respect, is holding a Cancer Survivor’s Network Day. It is a day to celebrate those who have survived the beast. Needless to say, our thoughts will also be on our family and friends who are not there because of the beast….a day of celebration but somewhat bittersweet. I will participate as one of 5 men who are survivors. There will also be 5 women recognized. The day will be devoted to many breakout sessions in trying to help those who are in the fight, as many of us are, cope the very best we can. Let the “Voices of Colon Cancer” and the Cancer Survivors Network Day just be two of many celebratory days to come. You are doing such a good thing and I hope you take great pride in your efforts. Without folks like you who roll up their sleeves in spite of their sadness and loss and get to work, the beast will never be defeated. Thank you for all you do.

2-18-11
7:16 PM
Live, Lucy, Live

I don’t know if any of you remember, but one of Leroy’s last blogs was about a “boy and his dog.”

Spanky, we called him.  That was what we were going to call our real dog when we finally stopped traveling and had the time to take proper care of a new family member.

Spanky was a stuffed dog…the cutest stuffed dog there ever was…in fact, I have him on the bed still.  He was a gift from the sister of a dear friend.  She had read Leroy’s words about always wanting a dog and when they traveled across the country to say good-bye to Leroy, she packed this cute little stuffed doggie in her bag and presented it to Leroy with a tear in her eye.

It was matched with a tear in Leroy’s eye too.

So I get what Ned is talking about.  His Lucy is real in every way.  The best pal when the real best pal is gone. And to hear the news that Lucy might not have much time left is another attack on the heart.

It’s hard taking so many hits to the heart.

We’re built to withstand a lot, I think we’ve all learned that the hard way.  But wouldn’t it be nice, just for a little while, to get some time to heal and remember what it was like when life was a little less punishing?

LIVE, Lucy, LIve…

Comments:

Ned Lemon (Ned_L)
2-21-11
8:59 PM

Lucy had her first treatment today-doing well.The steroids have given her an appetite. Everything is going to be ok.

Sasha Degaspar (Dolly)
2-21-11
8:20 AM

I’m so sorry to hear about your Lucy………….

Dianne West (Dianne_in_Nevada)
2-21-11
12:10 AM

Ned, I’m so sorry to hear of Lucy’s illness. May you “keep on walking” together for a long time.

Brady Merrill (SAOC)
2-19-11
8:16 AM

I too have a most wonderful dog, he was kind enough to take me out on long walks in the country in between treatment weeks. He never complained about my pace or wanting to nap during the walks. His hips are going, 30 minutes is his run now and like him I never complain about the pace or wanting to nap. He is still willing, he is still always thinking of what fun we could do next, still asking ‘hey what we going do now?’

All our scars are earned and paid for I suppose.

It is hard to lose those you love, to feel the ache of their being gone from your life. But to be here, aware and alive that is the price we pay. It is where our well of faith and hope spring from. So shed the tears, feel the losses, hug those still here and look for the sun to rise again for us.

2-16-11
6:09 PM
Thank you Mother Nature

Good ‘ol Mother Nature…just when you think you can’t take one more day of below freezing temperatures. When the ice in your front yard appears to have become a permanent fixture and you’re so tired of looking in the mirror and the Michelin tire man is staring back at you because you have so many layers of clothing hanging from your body…Mother Nature orders-up a day with blue skies, no wind and early Spring sunshine.

I could actually smell the dirt today.  That wonderful waking-up from a long winters’ nap smell the dirt gets when the season is about to change.  I know this is just a tease.  It will get cold again.  But I needed this day.  It’s been a long Winter and yesterday was the 2 1/2 year anniversary of Leroy’s death.  Another marker of time that plays with my mind.  So, I really needed this beautiful day.

It reminds me of a poem I found just a few days after Leroy died.  I’d like to share it with you again…

THE TREE OF LIFE

IF I MUST LIVE MY SEASON

AS A LEAF ON THE TREE OF LIFE

PLEASE LET ME BE A LEAF THAT LIVES ON THE EDGE.

LET ME SEE THE SUN, LET ME SEE THE STARS,

LET ME FEEL THE WIND, LET ME FEEL THE RAIN.

I WANT NO SHELTERED PLACE IN THE MIDDLE.

TOO MUCH SUN MAY BURN ME.

TOO MUCH WIND MAY TEAR ME.

AND LEAF-MINERS  MAY TUNNEL WITHIN ME..

BUT, O..HOW I WILL HAVE LIVED.

A LIFE FULL OF BLOSSOMS,

A LIFE FULL OF THORNS.

LEAVING NOTHING MORE FOR THIS HEART TO TASTE.

Comments:

Ned Lemon (Ned_L)
2-17-11
9:22 PM

Laurie’s poem touched me. I found out today that my dog, “Mean” Lucy the fearless Border Collie, is suffering from Addison’s disease. Her life will never be the same. I don’t know how many seasons remain for us to share the quiet pleasure of witnessing the ever changing leaves. I don’t know how long it will be until i have to face the fact that I’m really just talking out loud to myself. Shortly after Penny died, completely by chance, I read a dated notice advertising puppies ready for homes. I never was a “dog” person and most animals make me sneeze. I called anyway-what the hell-everything else was upside down. I was told all the pups were accounted for. A day later I got a return call from a lady who had located my phone number on her caller ID. She said “Peanut” had been rejected by her potential new family. When I first saw the little dog I immediately understood why she was given the name. I took her home and committed her to a new moniker.Over the course of time she grew into a beautiful angel. She is not aggressive, but nothing really intimidates her. Lucy has always been ready for whatever- if it’s getting up at 2AM to gaze at the moon or a ridiculous walk in inclement weather. Her eyes reflect an intelligence beyond a perceived existentialism. Today we walk. Tonight we cry-just get on with it. This counts. This is now. Lucy has spent many of these hard winter nights at my feet-suffering admonishment about her growing lazy and spoiled. The subtle changes were easy to dismiss. I’m good at hiding from what’s easy to discern. The limb broke this week. I was out of town visiting a special friend when I received a text message from Lucy’s caretaker:”something not right” When I got back we went to the vet and was sent home with digestive medication and a diagnosis of separation anxiety. Within 24 hours I was back on the phone demanding further review. I kept having the feeling that I had been through this before. So here we are. In a quiet house-just being-just sharing. Whatever we have to face-so be it. The pain is hardly worth measuring and the grace of love remains without bounds. Stan, who was a special “My/Our Cancer” companion always enjoyed reading about Lucy’s antics. I miss him and I miss the luxury of living without thought to my own course in the nature of things. We intend to keep on walking and when the storm comes we will find peace somewhere in the turmoil of time.

Nan Holmes (BigMailbox)
2-17-11
3:06 PM

Perfect!

betty obst (bettyoops)
2-17-11
10:42 AM

love it Laurie…. thank you!!

Sasha Degaspar (Dolly)
2-17-11
7:09 AM

Beautiful!

Kathie Scott (KTS)
2-16-11
8:09 PM

Oh my goodness how beautiful.

Brady Merrill (SAOC)
2-16-11
6:45 PM

Amen. A life lived, hopefully well, but a life lived, is better than not I think.

Al Cato (tennisbum)
2-16-11
6:36 PM

Amen!!!!

2-14-11
5:41 PM
Heros Around Us

I was honored to be invited to a military promotion ceremony today at the Pentagon.  A brave soldier who has served his country proudly for many years and has been in harms way too many times to count was promoted to Lt. Colonel.  This is a friendship that comes by way of Leroy and his march across the desert with the 3rd Infantry Division when the War with Iraq began in 2003.  Leroy and Erik bonded on that journey.

I only wish, it could have been both of us there today.

But in the crowd, a woman, who has known Erik all his life.  At the reception, we started talking and the subject of giving-back came up. I told her that I had done some projects to help cancer patients and their care givers up at Hopkins and she shared her story with me.  Eleven years ago, she was in the fight for her life, struggling with breast cancer.

She tried many treatments and has successfully been free from disease for some time, but that wasn’t enough for her.  She wanted to pay it forward, so she decided to become a one-woman information pamphlet on what it’s like to go through surgery and treatment.  She joined a breast cancer hot line, of sorts, but her role was to be the living, breathing, face-to-face survivor.  Her experience was that when she went to meet these newly diagnosed women, they were petrified and couldn’t imagine going through the surgeries and treatments ahead of them.  She provided the calming voice…the voice that could explain the reality of walking the cancer road. Short of taking their hand and walking them into the hospital, these women found the courage and strength they needed through her words.

This woman has just settled into a new city and now she’s set her sights on finding a cancer center that will welcome her special set of skills.  The women fighting breast cancer in her new surroundings don’t know it yet, but they’re about to get very lucky.

When I left the Pentagon today, I thought about the ceremony and realized, there were a lot of heroes in that room.

Comments:

Nan Holmes (BigMailbox)
2-16-11
10:44 AM

When I tried to check in yesterday, “Our Cancer” wasn’t to be found. That reminded me how much I would miss everyone if it did go away. My local NPR station is having pledge week, and I gladly volunteered to do on-air because I not only have a passion for public radio, but I am very passionate about this blog! And it appears that the young woman at the ceremony is living her life with passion, too. It’s so good when you get to share that passion.

Kathie Scott (KTS)
2-15-11
6:08 PM

It’s funny how your day starts out with one purpose and that journey leads you to something unrelated but equally wonderful. As we know not all heroes wear uniforms…it is all about paying it forward.

Al Cato (tennisbum)
2-14-11
6:53 PM

May God continue to bless her. There are truly angels who walk this earth. Laurie, you met one today. Hope she will find a place that will use her unique gifts and abilities…..so much is needed to help those in the fight. Invite her here to tell her story and brighten our days.

2-10-11
6:29 PM
There’s HOPE in those Labs

The men and women wearing those white lab coats are at it again.  More findings, and that translates into more hope.

A more rare form of pancreatic cancer was the target this time in a phase 3 trial and the results proved to be very promising.

And then there’s the news that breast cancer surgery and it’s impact on the large bundle of lymph nodes under the arm is about to change.  Cancer experts are suggesting now that it’s no longer necessary to take all the nodes.  Instead just a few that are closest to the cancer in the breast would be targeted.  That would lessen some very severe after effects of the surgery.

It’s all good news.  It’s all pointing in the right direction.  The direction of finding better ways to treat and fight the beast.

Keep the lights on in those labs…

Comments:

Margaret M (M_Mully)
2-24-11
2:02 PM

With this news, a lot of people are wondering if their surgeries to remove the lymph nodes were really necessary. I had all the lymph nodes removed. For me, if I were diagnosed today instead of 3 years ago, I know that I would still have the same surgery. In my case, the cancer was in the lymph nodes- we knew that and we knew that with the way the cancer responded to chemo, the best chance for me was to remove the lymph nodes. I do have lymphedema, I wear a sleeve and a glove and I have to wrap my arm up before I go to bed at night. It’s not fun in warm weather, but if it means that the cancer is less likely to come back, I’ll deal with it.

Al Cato (tennisbum)
2-13-11
9:28 AM

Yes, there is HOPE in the labs and trials. New drugs that do offer an improvement but not a cure. New techniques in surgery to reduce the trauma to the patient immediately as well as long term. I realize what the docs are saying about not removing the lymph nodes in the entire basin but I am NOT convinced yet!!! I have had 2 Sentinel Node Biopsies, 13 nodes removed from the left side of my face and neck, and there was no melanoma found in the nodes so there was no removal of all of the nodes in those basins. I was told before hand that there would be a total resection if melanoma was found in the nodes and I was OK with that. I wanted the melanoma gone, period. I also knew the potential consequences of numbness, lymphedema, etc. The theory was/is that if the nodes in that basin are removed then there is a reduced likelihood .that those melanoma cells would exit from the nodes and into other places in the body. The SNB is a diagnostic tool primarily and not a treatment…..however, if the cancerous nodes are removed from a basin, it would seem to be a form of treatment by eliminating a source of more cancer cells. Then chemo and/or radiation would follow. Perhaps the new approach will prove to be more beneficial than the old way but if I can have a source of cancer cells removed, that would be my choice. With this new approach, the newly diagnosed breast cancer patients may or may not be offered a choice. They won’t know about the old way since their level of cancer education is so elementary that they probably won’t even ask the question. Much of what is done in the cancer world is based upon statistics and perhaps that is the way it must be. I also believe that each of us is unique and an individual. How we respond or don’t respond is not dictated by statistics. How many cancer patients do you know who are survivors when the stats say otherwise? How many patients do you know who have failed to have a response from a type of treatment when the stats say otherwise? Would be so nice if the lab guys and girls could discover a way to be a predictor of responsiveness to a particular type of treatment by taking a small piece of tumor and subjecting it to the drug before subjecting the patient to it. Some work of this type is going on but they have a long way to go before it is really a useful tool. Always Believe in Miracles…..they do occur in the cancer world everyday!!!!!

Sasha Degaspar (Dolly)
2-11-11
10:12 PM

It’s all good news! Lets hope and pray…………..

Kathie Scott (KTS)
2-10-11
9:40 PM

Keep HOPE brightly lit so everyone can see it.

 

2-10-11
6:07 PM
Selection Process

What did you look for in a cancer center?  How did you select your cancer specialist?  Some one said to me today, that Johns Hopkins has always had that big, ominous feel to it.  Maybe to the extent that some cancer patients don’t go there because it isn’t “touchy-feely” enough and I laughed.

First of all, “touchy-feely” wasn’t a big factor for us when Leroy got his diagnosis.  Aggessive, knowledgeable doctors with some of the best reputations in the world ranked at the top of our list.

Some one said, they’d been to a Cancer Research Center and it was state of the art and the doctors dressed down.  No white doctor coats, street clothes and casual.  Now I’m sure these were very good doctors too…but do you really rate your oncologist by the color of the shirt he/she is wearing?

I suppose it matters what part of the country you live in and if there’s a great cancer facility in or near your city.  But I’m just curious about how you decided on your cancer care?

Is it more important to have a smiley face on your lapel or are you coming into the exam room today to tell me about a medical trial that might save my life?

Comments:

Al Cato (tennisbum)
2-13-11
8:55 AM

When my dermatologist called in 2001 to tell me that the biopsy was melanoma, I was so shocked and then scared that I really didn’t know where to go or who to see. I called my internist so that I could see him ASAP. After his examination and a few tests which revealed nothing, he told me that I should go to this oncologist immediately because this is the oncologist he would go to if he was diagnosed. So I went immediately and have been with him for 10 years. I was so new to the cancer world that I didn’t even know the right questions to ask beyond some obvious ones……what’s the next step? What is my prognosis ( he showed me the stats and we’ve never discussed them again)? Do I need chemo? etc. Many of the newly diagnosed are refferred to specific doctors as in my case or to specific doctors who are associated with major medical institutions. New patients are too numb and not well informed yet to know the right questions. Only through experience, self education and information from blogs on internet sites do new patients begin to become educated. Then they are able to evaluate their specific situation as well as the doctor or doctors associated with their treatment….they learn about major cancer centers, clinical trials, new drugs, new procedures and tests, etc. so that they are on the path to a much greater level of education about their disease. Some of us are lucky to find an oncologist with the medical expertise in our specific type of cancer on the first try. Others have to seek them out. Some doctors have no personality but are highly trained and very good at what they do. While others are full of personality but just seem to be “lots of glitter but not much substance”. I believe that once a cancer patient has acquired a certain level of basic cancer education, they can then evaluate their oncologist to see if there is a match. If there is not a match, change quickly. I was not looking for a best friend nor even one who would be my friend but one who had the knowledge and expertise that would give me the very best chance at surviving. Fortunately for me, my oncologist is a friend who possesses all of these traits. He also is confident enough in himself to “know what he doesn’t know” and he has sent me to other oncologists for opinions on treatments that they are using in clinical trials. When newly diagnosed, we will most often take the first doctor we are referred to. We want help and want it now. As our sophistication and education increases in the cancer world, we will then evaluate as to whether or not the first referral was the best for us.

2-9-11
5:14 PM
Think It Over

Can it be that Kathie actually heard those words, “At least he doesn’t have cancer?”

Oh my gosh, that is just in such bad taste.  I’ve bitten my tongue many times, holding back with everything in me, after someone said something stupid in front of Leroy about his cancer, but “At least he doesn’t have cancer,” would have unleashed something fierce, I promise you that!

Mo…and it’s great to hear from you Mo…”Your Unwelcomed Opinion” is good.  I like that, in fact, I’m tempted to send it to Hallmark, after their attempt at Cancer greeting cards.  I thought that was in such bad taste.

Al, instead of “Cancer for Dummies”…it’s more like “Dummies…Those Who Don’t Get Cancer.” “What NOT to Say.”

We all got the idea or the message we’re trying to send.

Maybe we just suggest a slow count to ten.  That would give a person time enough to think about what they’re about to say and then rethink it.

There’s a lot to be said about measuring your words.

Comments:

Kathie Scott (KTS)
2-9-11
7:40 PM

Laurie, I guess I should actually clarify my “rant”. Nobody actually said that to Jim but I have heard it over and over on TV and have often heard people talking about having a illness and say “well at least it’s not cancer”. I have actually have had people say that in my presence knowing that Jim was fighting it. I hope my look made them as uncomfortable as I was hurt, when they realized what they had said. I learned a long time ago when I asked someone when their baby was due and they weren’t pregnant to tread lightly with some conversations. I don’t think we will ever rid society of thoughtless people.

2-8-11
6:02 PM
A Best Seller

Maybe we should write a booklet called “The Guide to Cancer Etiquette.”

We could put it on the blog and pass it around to all our friends and neighbors and they could do the same.

It seems this would be beneficial to all those folks out there who just don’t get what it takes to live in cancer world.  They don’t get that the courage and strength to fight this nasty disease takes all our time and effort.  Doesn’t matter if you’re the caregiver or the patient, you’re burning calories 24/7 just to survive.  You don’t have time to fend off ignorant comments.

I would venture to say, all of us at some point in our lives, have had our feelings hurt.  It’s uncomfortable and it messes with our heads for a few days before we move on.  But living with cancer…that’s enough of a load to carry.  We certainly don’t need to hear from some ignoramus on a subject we know all too well.

So we need to think of a snappy title and a list of suggestions of what NOT to say and I’d guess we’d have a best seller on our hands.

We’d be like one of those big groups who buy one lotto ticket and split it between them.

Winner….Winner!!!

Comments:

Maureen Doallas (Mo_D)
2-9-11
11:25 AM

“Your Unwelcome Opinion: The Outsider’s Guide to Cancer Etiquette”.

Al Cato (tennisbum)
2-9-11
9:26 AM

“Cancer For Dummies”…….What Not To Say To A Cancer Patient OR Caregiver!

Kathie Scott (KTS)
2-8-11
8:08 PM

I think the phrase that, over the years, bothered me the most is when someone is ill with whatever illness they have, people say “at least he doesn’t have cancer”. It seems to be all over tv and in the real world. Translated…if you have cancer hang it up. Do you ever hear anyone say “well at least he doesn’t have heart disease”? Everytime I would hear that in Jim’s presence I would cringe. It was like the whole world had given up on cancer patients.

2-7-11
5:49 PM
Unwelcomed Opinions

How is it that some people can go through life making unfiltered comments and never thinking about the consequences?

Ned’s post about the blood donor is all too real in so many instances.  We’ve all heard people give an opinion like “chemo doesn’t work” and walk away.  Never thinking what effect it might have on the person listening.

Message to “Thoughtless One”….

It sounds to me like you may be one of the rare people in this world who hasn’t been touched by cancer.  You’re a lucky guy, if that’s the case, but for those of us who have, here’s a little information you might find helpful about our world.

We live in a place that is filled with mixed emotions brought on by a disease that twists and turns our lives, sometimes daily.  It matters what you say to us because even though we are forced to grow thick skin and strong back bones, sometimes, those things just aren’t enough.  We’re an emotional bunch and we don’t apologize for it, but at the same time, we try not to wear our fragile feelings on our sleeve either.  So you may not know that we belong to cancer world.  Keep that part in mind the next time you decide to voice an opinion you clearly don’t have much knowledge about.

The stranger you’re talking to might be a brave soldier, hiding the scars of painful cancer battles.  Opinions, like “chemo doesn’t work” are not welcomed.

Have a nice day!

Comments:

Sasha Degaspar (Dolly)
2-8-11
7:21 AM

Chemo did not cure John, but it did allow him to live longer. However, I know of people who received chemo and were totally cured………..lifting

Brady Merrill (SAOC)
2-7-11
8:35 PM

Stay in crazy land long enough and you’ll be the given the gift of someones ignorance regarding your cancer. I have always managed to remain quietly polite. I remind myself that soon enough that person will land in crazy land some way. Then the time comes when the decisions are theirs to make, the side effects of the treatments are theirs to carry around, surrounded by others in crazy land their world changes and they get to suffer the mouthing of fools themselves. Seems like that’s both fair and horribly unfair but so it is in crazy land as we all know.

Kathie Scott (KTS)
2-7-11
8:13 PM

Even if this person had said “chemo doesn’t always work” he would have been correct but in cancer world they’re still words that bring anger and hurt. If you are fighting for your life or the life of someone you love, you will grasp at anything that might bring that miracle on. Did Jim’s chemo work..of course it did for a few years. Had he not had chemo we would have lost him much earlier so say it doesn’t work around me and the hair on the back of my neck will stand up, my face will turn red and fire will shoot from my eyes and then my mouth will start probably before my brain actually kicks in.

Al Cato (tennisbum)
2-7-11
6:34 PM

Amen and amen!! Tell it like it is!!! Wouldn’t you love to confront this person…well, I would.The life line of Hope is very tenuous in the cancer world as we know. So, we don’t need people from the peanut gallery giving an opinion when they have never walked in our shoes.

2-4-11
6:08 PM
A Tasty Jelly Donut

Today is not just any day…it’s DAY100 for my pal Bruce.

If any of you out there are familiar with bone marrow transplant, the one-hundreth day following transplant is a huge milestone.  There is so much that can go wrong with a bone marrow transplant.  I mean, after all, first you’re told you have a very serious form of leukemia.  That’s a “you have cancer” moment that knocks your life into turmoil.  Then the chemo begins.  Round after round of terrible chemo.  Bruce was in the hospital for weeks on end.  He fought infection, reactions to meds, rashes, nausea, the list goes on and on.

Then the search for a marrow match began.  Not an easy process.  One  matched person actually responded by saying it just wasn’t a good time to be a donor.

So, one hundred days ago, he had his transplant.  He’s battled more infection, graft versus host issues, you name it, he’s had it.  But he’s made it to the magic one hundred days.

The docs figure if you get to that marker, your body is working hard to adopt a new immune system and make a home for it as the new marrow makes Bruce a healthy new man.  So he begins anew.

He’s still not doing cartwheels, far from it.  But, he did feel well enough to celebrate just a little today.

He ate a jelly donut…doesn’t get much better than that!!

Comments:

Maureen Doallas (Mo_D)
2-9-11
11:18 AM

Always so wonderful to hear good news. Continued best wishes for Bruce… and many more donuts.

Nan Holmes (BigMailbox)
2-6-11
9:10 AM

Bruce gives real meaning to “it’s the little things in life.” I remember a book my daughter loved when she was very young, “Who Needs Donuts?” We all do!

Al Cato (tennisbum)
2-5-11
6:49 PM

Good post Ned. While we all know that chemo doesn’t always work, we also know that it does work wonderfully for some patients. I’d be happy to introduce this guy to someone I know personally who just celebrated his 5 th year free from Stage IV Non-Hodgkins Lymphoma…a walking, talking miracle who my oncologist gave 30-60 days to live. My oncologist will tell you that he has seen a miracle!! Sadly, too many people go through life as pessimists and never Believe in Miracles! I hope this guy will go through his life free from cancer because if it does visit, he’ll be the first one asking for chemo to hopefully save his life.

Ned Lemon (Ned_L)
2-5-11
12:06 AM

Wonderful news. A day of hope and healing.It is nice to share in such great news. The potential donor who didn’t find it convenient to safe a life reminds me of an incident I witnessed this week. The young nurse-technician who was working at a local blood drive was obviously upset. A kind woman, who like me was also donating blood, asked the pretty young nurse what was wrong. Why the muffled tears? The young woman said that while she was making small talk with the previous donor he had expressed his sure, but unprofessional opinion, that chemo does not work. He was sure-he had witnessed it a million times. Lots of effort and suffering just to make doctors rich. The guy left confident and feeling good about taking part in a civic duty-not giving a second thought to his thoughtless comments. The young health care worker tried to keep up a professional attitude as she shared with us her cancer story. She is a young mother who has been through hell. She’s on the other side now. Back to work and trying to believe in a new NED world. It was a time for shared silence when this beautiful young women moved her rich dark hair and pushed back her lab coat to show us extensive scaring on her lower neck. We just have to think about the consequences of our words and actions. We can spend our lives-literally spend away our time in a vacuum or we can accumulate true riches by simply doing our best to live with compassion and understanding.

Al Cato (tennisbum)
2-4-11
6:37 PM

Congratulations Bruce!!! Great to read the good news. I have 2 little ones that I am following, supporting and praying for who have leukemia. It is such a tough battle. I hope one day Bruce, you will come here and tell us your story. In the interim, we rejoice and celebrate the small victories in your fight. Pretty soon NED will be visiting and hopefully setting up a permanent residence in your new bone marrow.

2-3-11
6:00 PM
A Day Devoted to Cancer

I really wasn’t complaining yesterday…it really was just “one of those days.”  But I have to laugh because not ten minutes after I posted the blog, I lost power!! The entire street went dark for about three and a-half hours.  That capped the day!!

So from that to this….Friday, tomorrow is “World Cancer Day.”  It’s not sponsored by a big group with a lot of money to throw around in the name of cancer.  All this group asks, is that you tell your friends or some one you know who is fighting a cancer.  It’s intended to make us all think about how this beast touches us all and when it really gets personal, just how life changing it can be.

So, tomorrow, at some point in the day whisper a few words of hope that some time soon, one of those guys wearing a lab coat we often talk about here, will lasso a genetic marker that will change the course of cancer treatment.

Who knows some one might be listening.

 

2-2-11
5:28 PM
One of THOSE Days

Have you ever had one of “those” days?

You know what I’m talking about.  No matter how hard you try to get things done, there seems to be something or someone standing in the way.  I was on the phone a lot today, trying to get answers.  It should have been easy, but the first person I spoke with gave me bad information and the ball just got rolling from there.

I don’t know if any of you believe in karma…good or bad….but once the tone was set, the karma for the day seemed to be set too.

Before cancer, this stuff used to make me crazy.  I’d let it get to me, but after cancer, it just doesn’t happen.  I’ve seen the worst days…I’ve lived them.  We all have.

My days as a caregiver in cancer world taught me patience above all else.  I’m a defender now and I have learned to deflect a lot of what’s coming my way.  It’s all a part of cancer boot camp.

So, to borrow a little ‘tude from “Annie” and Scarlett O’Hara and Pollyanna….tomorrow is another day and it’s got to be than this one.  THIS one was one of “those” days.

Comments:

Al Cato (tennisbum)
2-3-11
8:41 AM

Sorry for your Those days…..Let me tell you about one of THOSE DAYS…..Yesterday I met face to face with a man I only knew via our conversations on the internet about our cancer situations and supporting one another. You should meet him, everyone should meet him!!!! He is 80 years old and has a smile that is constant and lights up the room. Hugs are mandatory for everyone he meets…I talking about a big hug and he is a little guy like me. We had lunch and talked and talked. He and his wife have been married for 53 years; 4 kids and 6 grandkids. He served 30 years in the military…Vietnam and Korea. Cancer came to him just within the last 2 years..Non-Hodgkins lymphoma…had his spleen removed. He has just completed his chemo regime and his most recent scan showed that he is CLEAR/NED. He is so positive about his life, his circumstances that it is really contagious..it is not an act. He believes it with all of his heart. He and I are going to participate in an event sponsored by St.Joseph’s Hospital here in Atlanta called Cancer Survivors Network – Sharing the Journey. His smile will light the conference center and his personality will lift the spirits of all who attend. He is not a pollyanna but he has chosen to look at life with a positive attitude. If you meet him, he’ll hug you to death …in a very nice way! I am thankful to have one of THOSE DAYS. It truly lifted my spirit.

Kathie Scott (KTS)
2-2-11
6:08 PM

It must be in the air. I kept telling everyone at work today that I felt like I was doing nothing but walking around in circles. Of course my day had to end with a resignation in an already short staffing situation. I have always had a fairly calm demeanor but work best under pressure and I see it coming down the pike. During Jim’s illness when things would happen at work my motto was “it’s a little thing in the grand scheme of life”…and it still is. I’m afraid that was my motto out of work also when people were whining over waiting too long in whatever line they were complaining about.

2-1-11
4:54 PM
“What If…”

Have you ever played the game “what if?”

Navigating through cancer world, Leroy and I did that from time to time.  When we first heard the words, “You have cancer” there was so much going on inside our heads, the future really wasn’t something we thought about, at least not right away.  We, or I guess I should say I, could only think about how the present  would be impacted.  Taking each day with it’s specific duties.  Was it a chemo day? Was it a day of tests?

When we played the “what if” game, it circled around the basic question, “What if I didn’t have cancer?”

The answers were always so easy.  Our world would have been perfect.  We’d never disagree on anything.  We’d win the lottery, buy a beautiful ocean front home in Maui and you get the idea.  Playing in fantasy land broke the tension of living in cancer land.

I still play the game in my head from time to time. I’ve come to my senses now, so the answers aren’t quite so silly.  I’d settle for a lot less.  I think we’d all say that.

But I’d still start with, “What if Leroy never had cancer?”

Comments:

Reginald Francisco (Curecode)
2-12-11
12:08 PM

I like the what if question:) A new emerging science called nutrional genetics developed over the last 10 years shows about one million of your ancestors never had cancer. The Okinawans and certain Japanese Villages almost never get cancer. They have they highest disabilty free life expectancy in the world, They also have the highest number of people living beyond one hundred years of age anywhere on earth. They must be doing something right.As we changed the nutrtional time line in what we ate we began to aquire diseases we never had.Cancer is one of them.

Nan Holmes (BigMailbox)
2-2-11
10:37 AM

For two years before it was discovered that my husband had colorectal cancer, I had begged him to get a colonscopy because of Katie Couric’s husband’s death. That has been our big “what if?”

Al Cato (tennisbum)
2-1-11
7:08 PM

This is good……I have often had moments or flights of fantasy to wonder “what if”. How would my/our lives be different and what would those differences be? I would be really healthy (nothing really wrong at my age except cancer); I could continue playing tennis with my buddies; we could take vacation trips (can’t risk it now since all of the side effects continue to hinder me and put me at risk to be away from my docs); we would have the money to help our kids and grandkids more than we do now; etc……..on the other hand and since cancer has been in my life more regularly than I would have ever expected, I’ve met some of the most wonderful people who, like me, live in the cancerworld,; I’ve returned to the church and feel a closeness to God that has been missing in my life for far too long; God’s gentle tap on my shoulder finally got my attention, thankfully. I look for opportunities to volunteer to help others…now Meals On Wheels in addition to my cancer support efforts; I really do treasure my family..wife of soon to be 46 years, my kids and grandkids. I know that in the blink of my eye, I could be gone and never see them again, etc. Would I rather not have cancer…..you bet!!! But since I do, I’ll make the most of it until I no longer can….”.Not the breaths we take but the things in our life that take our breath away!!!” I look for them…simple though they may be and treasure each one. I do like the flight of fantasy but since it is a fantasy, I’ll have to be satisfied with the life I have and I am truly grateful.

January 2011

1-31-11
5:20 PM
Back to the Drawing Board

The topic of “getting back to normal” came up in conversation over the weekend.  Resuming life as it was before cancer.

The life that made me who I was for so many years, leading up to 2001, Leroy’s first brush with colon cancer.  But maybe even leading up to 2005 would be more like it.  When his cancer came back, locked and loaded and ready to fight to the death.

That life.  The one that I felt so secure in.  The life where I challenged each day and felt confident in my decisions.  I always thought I could take on just about anything or anyone.

That person, me….has been rocked to the core and I’ve come to the conclusion what was, then…will never be the same, now or in the future.  Those days of my life are in the past.  It’s up to me to create a new image now.  Some people might think it’s a little late in the game to do that, but I have no choice.  I’m not finished living, I’m just finished being the person I was before cancer.

It not only took Leroy from me, it took “me” too.

It’s back to the drawing board.

Comments:

Kathie Scott (KTS)
1-31-11
8:20 PM

How can we ever be the person we were before cancer took over our entire lives and took the thing most precious to us? I just don’t see me ever being the person I was before. I don’t know who I will become. Right now it’s still day to day and going through the motions. Thank heaven for a promotion and more work. It’s the one place I can feel normal.

Brady Merrill (SAOC)
1-31-11
8:16 PM

Laurie isn’t that the crux of the problem for both caregivers and survivors? The road map we had has been burned away and we are facing the question of who are we now? Nothing seems to really fit anymore, we have been resized and reformed and struggle to fit in the ‘normal’ world and I suspect even to find meaning there anymore.

Seems like another parting gift from the disease that keeps on giving.

1-28-11
3:26 PM
REMEMBERING CHALLENGER

IT’S TIME TO PAUSE A MOMENT AND THINK BACK 25 YEARS WHEN THE WORLD WAS LOOKING UP, TO THE SKY AS THE CHALLENGER WITH IT’S CREW OF SEVEN LIFTED OFF FROM CAPE CANAVERAL.

A VETERAN COMMANDER, A SCHOOL TEACHER, THE FIRST ASIAN-AMERICAN IN SPACE, THE SECOND AFRICAN-AMERICAN IN SPACE, THE SECOND WOMAN ASTRONAUT IN SPACE AND TWO OTHER HIGHLY TRAINED  ASTRONAUTS.

JUST 73 SECONDS INTO THE MISSION A SERIES OF EVENTS CAUSED THE SPACE SHUTTLE TO SPLIT APART.  ALL SEVEN ABOARD WERE KILLED.

IF YOU WERE WATCHING THE LAUNCH, YOU PROBABLY REMEMBER THE DELAYED REACTION EVERYONE HAD WHEN IT HAPPENED.  THE EXCITEMENT OF THE LIFT-OFF AND THEN THE HORROR AS THE SHUTTLE BROKE APART.

I FOUND MYSELF ON A FLIGHT TO THE BIG ISLAND OF HAWAII SHORTLY AFTER THE DISASTER.  THAT WAS WHERE ELLISON ONIZUKA, ONE OF THE ASTRONAUTS, WAS BORN AND RAISED.  HIS FAMILY STILL LIVED UPCOUNTRY, ON THE ISLAND.  HIS SISTER WAS A SCHOOL TEACHER AT A SMALL ELEMENTARY SCHOOL NOT FAR FROM THE FAMILY HOME AND GENERAL STORE.  BY THE TIME I ARRIVED, FRIENDS AND FAMILY FROM ALL OVER THE ISLAND HAD LEFT ORCHIDS, LEI’S AND NOTES OF SYMPATHY ON THE STEPS AT THE HOUSE.

THE ENTIRE ISLAND WAS IN MOURNING.

MY CAMERA CREW AND I ARRIVED AT THE SCHOOL THE NEXT MORNING AT DAY-BREAK WHERE THE CHILDREN WERE RAISING THE FLAG TO HALF-STAFF.  A LITTLE BOY, STOOD AT ATTENTION AND PLAYED TAPS ON HIS BUGLE.  WE ALL CRIED.

WE FELT THE LOSS, STANDING THERE ON THAT ISLAND IN THE MIDDLE OF THE PACIFIC, JUST LIKE THE REST OF THE WORLD.

THAT WAS 25 YEARS AGO, JANUARY 28TH, 1986.

IT’S IMPORTANT TO REMEMBER.

Comments:

Nan Holmes (BigMailbox)
1-31-11
5:52 PM

I, too, was in Hawaii, shortly after the disaster. I remember seeing a beautiful standing red wreath and realizing that Hawaii was in mourning for one of their own.

Sasha Degaspar (Dolly)
1-29-11
7:23 AM

I didn’t remember the exact date, but I too will never forget the horror of watching the shuttle break apart……..

Ned Lemon (Ned_L)
1-29-11
1:13 AM

Those school children who honored the fallen astronauts are now grown men and women. Unfortunately, they have joined their nation in grieve several times since the loss of the Challenger’s crew. I pray that they are able to build on all that has been witnessed. As they grow older personal tragedies will come at a faster rate. Odds are cancer will make an appearance somewhere along the road of their life’s journey. May they face dark days and dreaded journeys with courage and strength. The spirit of those who were lost will never perish.

Kathie Scott (KTS)
1-29-11
12:00 AM

It was one of those moments in life where I will always remember what I was doing when I heard the news…an overwhelming sadness for 7 people I never knew.

 

1-27-11
4:39 PM
Most Days Are Just Days

It’s a hard day for Sasha…It’s her birthday and it’s supposed to be a special day full of “happy.”  But it’s hardly that, instead she’s missing the man who made those birthday’s special  Cancer took away the special days on the calendar.  That’s just one of the “take-aways” from living and dying with cancer.

We still have dates, marked in red, but they represent different anniversaries.  Day of diagnosis, first treatment, last treatment, NED scans, relapses, death date.  They seem to pop-out at us more than birthdays or Valentines Day or the Holidays.

Our cancer calendars stay with us forever.

We’re a strong bunch, for the most part.  We’ve seen the worst of it and have rallied to face our new lives.  Mondays, Tuesdays, bring ’em on..but a birthday…we need a little help from our friends, on birthdays.

Happy Birthday, Sasha.

Comments:

Maureen Doallas (Mo_D)
1-28-11
10:21 PM

Dear Sasha, I’m late but send you heart-felt birthday wishes. Still lifting, too.

betty obst (bettyoops)
1-28-11
10:19 AM

Glad that you had so many people to support you on your birthday Sasha. That means a lot; so many people do not have this…so sad. Wishing you strength to carry on and make the changes you need to make to help relieve your pain.

Sasha Degaspar (Dolly)
1-28-11
8:10 AM

Thank you so very much for the birthday wishes. My phone did not stop ringing yesterday…….my kids..grandkids…friends…relatives, yet I had this ache in the pit of my stomach all day. I know I should be thankful that I’m surrounded by people who care, and I am, but it still hurts so much. The one person that I wanted the most was not there to wish me happy birthday. Again,thank you all for caring…………still lifting

Kathie Scott (KTS)
1-27-11
9:48 PM

Happy Birthday Sasha..as you say “lifting”.

1-26-11
5:26 PM
Broken Hearts Hurt

It’s not easy to open-up your heart and let the world peek inside…especially when you’re grieving.  You’re not just sad when your grieving, you’re full of hurt.  There’s an ache that starts behind your eyes and travels down through your chest, grips your midsection like a vise and all you want to do is curl up into a ball and cry.  Let it out, get it out…let the pressure valve release all that pain.

But it’s hardly something you feel like sharing.  I remember two and a-half years ago, after Leroy died, when crying was just like breathing.  I never thought it would stop.  Many friends said, “Go talk to someone.”  Our hospice nurse made one visit and we talked but I just couldn’t get comfortable with her.  The hospice group offered sessions, but it turned out the people in the group were much older than me and their loss was very different in a life stage kind of way, so that didn’t work either.

Family and friends helped, of course..But I had all of you and I felt like we were feeling some of the same emotions of loss.  I’ve felt that since Leroy’s death, when some of you have lost loved ones to cancer too. That’s not to say, some get tremendous help from seeing professionals who focus their practice on bereavement either one on one or in group sessions.

I guess it comes down to knowing yourself and measuring your needs at such a crucial time in your life.

Having a broken heart is bad enough.  Finding the right way to repair it, is a delicate and difficult task.

Comments:

Nan Holmes (BigMailbox)
1-27-11
2:36 PM

Sasha, I am wishing you strength for your birtday, because “happy” may not be exactly what you are feeling today. I was asked “how are you doing with your grieving my mother)?” I said “well my heart is still hurting some.”

Sasha Degaspar (Dolly)
1-27-11
6:01 AM

Our community here is the only place I can open up to others about my feelings. Yes, family and friends do help, but they have no idea of what we are feeling unless they have walked in our shoes. Broken hearts do hurt…..mine hurts so much today……it’s my birthday and I long so much to have my beautiful man back…..still lifting

Kathie Scott (KTS)
1-26-11
6:20 PM

Gosh,Laurie, you are so right. It is difficult to open up to others. I had a session with a Hospice grief therapist and like you I just didn’t connect with her so I then went to the group and again their situations were so different from mine and on person dominated the discussion so that didn’t work. I know when I come here, there is someone just like me and I can get help here anytime.

1-25-11
5:21 PM
The Door is Open

I don’t know if this gentleman will ever join our community.  From what I could gather today in the short conversation I had with him, he sure could have used the words and the friendship we provide on this site.  His mother had breast cancer.  She died from her cancer and he told me today he wished he’d had someplace to go, someplace to take her, where she would have gotten the support she needed to help her in the struggle.

He said she felt like she’d lost her real identity once she became a cancer patient.  She felt like the disease had stolen all the things that made her a mom, a wife, a person.

This man also said he could have used some help learning to be a caregiver too.

He lost his mom about a year ago, so I know he’s still reliving the worst of it.  So I invited him to our place…this place…where we have no time limits on membership. Your card is valid until you decide you don’t need us anymore.

We all learn from each other here….how to keep on living once cancer has entered our lives, as a patient or as a caregiver.

The invitation is open-ended…

Comments:

betty obst (bettyoops)
1-26-11
10:13 AM

Kathie….Do seek help if you feel you need it; you deserve to feel better and it should help you to get a handle of who you are, where you are going and how to do it. I know that Hospice has a grief support group that meets periodically for this purpose.

As Diane said, there are so many on-line support groups and going to one does not take away from the good you receive here…it is just another means of support. I truly recommend reading Diane’s Myeloma Widows blog. It is fascinating stuff and full of strength, courage and hope while she goes through this really difficult process.

Al, I think sometimes we are so overwhelmed as caregivers and so busy with the day to day concerns that we think we can’t “waste” time by seeking help for ourselves. Then too, it takes another form of courage to open ourselves to others in such an open way…to be able to share the fears, the worries, the guilt and possible criticism of how we react and how we accept the burdens we have. Once they do come in though, I think it is so helpful. I know when they changed us to this new site, we all wanted the ability to have the forum so we could have separate sections for people seeking a specific place or issue. However, I do feel that nowadays, very little is said except in response to the blog…and only a few seem to post here anymore. Perhaps it would be good to feature the blog only for a while, so that people who come go there and get a feel for how it used to be here? Just a thought! Ned… loved your post. Diane, I am so proud of you…you are doing all the right things for yourself, and even though it is still hard, you are really doing well.

Sasha Degaspar (Dolly)
1-26-11
7:37 AM

I hope your friend decides to join our community. As I have said numerous times, this place was and still is my salvation. When John was receiving chemo a social worker came to me with the names of bereavement groups in my area. I chose not to join…….I felt more comfortable here and still do. Thank you again Laurie for all that you do…………lifting

Dianne West (Dianne_in_Nevada)
1-26-11
12:36 AM

Our Cancer is a special place to come to – always ‘open’. I’ve also gotten great support through an online bereavement group that meets weekly. It took me awhile to get used to doing the chat format, but being able to “talk” to others who are grieving, share our feelings honestly and get support has been so very helpful. I also did a GriefShare group here locally – and yet think I like the online support better. It’s easier to be really honest online and one person isn’t able to take over the group, as often happens in a face-to-face group. And I’m writing a widow’s blog, too, that provides me with a great release. I’m still struggling – today was one of those days I cried all the way into work – but these outlets do seem to help me make some progress.

Here’s the online bereavement group. I had to complete a questionnaire to be accepted into the group. It’s facilitated by a professional (who also happens to be a recent widow).

http://online.cancersupportcommunity.org/community/index.php

You can find a GriefShare group in your area by going here: http://www.griefshare.org/

And here’s my blog address: http://amyelomawidowsjourney.blogspot.com/

Ned Lemon (Ned_L)
1-25-11
11:23 PM

“…she felt like the disease had stolen all the things…” Isn’t it awful when you see a television special about a crime victim who is ignored by people passing by because they don’t want to get involved. Have you ever witnessed the quiet pause and uncomfortable glare of those who find your cancer conversation uncomfortable. Like a thief, cancer breaks in unannounced and without regard to collateral damage. Its weapons include fear,ignorance, and guilt.

Kathie Scott (KTS)
1-25-11
7:15 PM

A timely topic as always.I have been discussing with my daughters over the last couple of days about talking to a professional. This group has been my outside support since the day I first came her but I think I need something a little more intensive. My sadness is still so overwhelming sometimes and I know my girls are the same way so I don’t want to cause them more pain. They are still so heartbroken over losing their beloved father but do have the distractions of raising their families. Eventhough I know all this, I am still finding it hard to make that call for that first appointment…so where do I come…Our Cancer! Once you come here and talk to the amazing people here you can’t leave. I hope your friend pays us a visit, Laurie.

Al Cato (tennisbum)
1-25-11
6:45 PM

Hope he decides to come to check us out and to see if we can help him….if by doing nothing except listening and understanding. As an aside and I know I am plowing old ground BUT……there are so many patients/caregivers who really have no where to go for support. No where to come to vent, to cry, to be enraged, to seek information and education and to be with others who have walked and are walking in their shoes. The light is always ON here and it is welcoming. My question is ( there is no answer)….why is it so hard to get people who obviously need and want help to come here and join us? The same was asked at our church by our little group who tried for a year to form a support group. Our church prayer list filled with people who need support and ask for support but will not, for some reason, go out and get it. One of life’s many mysteries. We’ll go forward and do what we can, when we can and for those we can….perhaps that is enough.

1-24-11
4:50 PM
Love, Hope, Courage

I have three little medalions that sit on a shelf next to a picture of Leroy.  He’s looking out over the Pacific ocean from his island of Maui.  Big smile, wearing a favorite T-shirt, swim trunks and his ball cap is turned around backwards.  Classic Leroy.

And the little silver discs are classic Leroy too: Love, Hope and Courage.

I think about how natural it was for him to sit here each afternoon and write his “My Cancer” message. Most of his daily blogs touched on at least one of these topics.  Toward the end of his life, he wondered out loud, how he could ever thank everyone for their love and support and friendship.  He wrote about never losing hope, even when the scans revealed new cancer.  Courage…that came naturally, in just about every posting.  I know he never thought of himself as being exceptionally courageous. He faced cancer like he faced going off to cover a different war.  He prepared himself, thought it through and he never became his disease.  He was so much more than his cancer.

So those little silver circles spell out so simply, three of the faces of Leroy.  But the one above them, with the real face and the real smile is the face I love the most.

Comments:

Sasha Degaspar (Dolly)
1-25-11
6:40 AM

There is not much I can add to what Al and Kathie have said. This site has been my salvation for over four years now. It has helped me through the most difficult time of my life. Thank you Leroy and Laurie……thank you, thank you ! !

Kathie Scott (KTS)
1-24-11
6:51 PM

Love, Hope and Courage..what more could we ask for. Both you and Leroy have displayed extraordinary amounts of all three. Cancer patients have more courage than anyone can imagine and their caregivers are capable of loving them beyond belief…Hope is what we all have to hang onto. Cancer shouldn’t be allowed to define a person. I always wished all the doctors could know what Jim was like before cancer when he was strong and vibrant.

Al Cato (tennisbum)
1-24-11
6:38 PM

Quite a man! And then again, he chose quite a woman! We all face adversity in our lives. How we deal with it says a lot about us.Leroy put a human face and voice onto cancer. He used his forum for good…when so many use their positions for personal gain and fame. That set him apart and thus attracted so many of us from across the globe who really have no voice. He spoke for us as only he could and made us proud to be a part of his blog. The 3 silver discs speak volumes about both of you. So glad that you choose to share yourself with us. You are special.

1-21-11
4:04 PM
A Home Movie

I opened up a drawer today and pulled out a DVD.  Popped it into the player and took a trip down memory lane.

I guess it was the equivalent to watching an old home movie.

It was “Living with Cancer.”  The Discovery Channel show hosted by Ted Koppel.  Lance Armstrong was a guest.  Elizabeth Edwards was a guest.  But the big guy with the big voice and the bigger laugh, was who I was focused on.

Oh, it took my breath away to see him.  To hear him, was music to my ears.  He was so animated, so full of life.  He talked about his cancer with such clarity.  He faced the beast with honesty and yet there was always the murmur of hope under his breath.

But most of all, he was relaxed, talkng to his good friend, Ted.  This was a very heavy duty conversation woven around his podcasts for NPR.  Words from his blogs that turned into messages for this community and to those who were not struggling with cancer…but reaching everyone’s heart.

A home movie with a beginning, a middle and an end.  But not a “happily ever after.”

Comments:

Dee Bee (wyobear)
1-23-11
10:45 PM

I remember watching the program. Very good. I hope him and Elizabeth are having some good conversations in heaven.

Dianne West (Dianne_in_Nevada)
1-23-11
1:26 PM

I can remember exactly how I felt watching that show with my Vern. The hope, the strength, the inspiration. And it brought me to My Cancer, where I felt such support and camaraderie with other caregivers. We didn’t get a “happily ever after” either but Leroy’s My Cancer and your Our Cancer have been such wonderful gifts to help me along this journey. God bless you.

Sasha Degaspar (Dolly)
1-22-11
8:05 AM

I too watched the discovery broadcast with John which brought me to Leroy’s “My Cancer website. I have pictures of John all over my house. I have his picture on my cell phone and I also carry his picture in my wallet. However, I have many videos………..but I just don’t think I can handle watching them. Maybe one day………lifting

Brady Merrill (SAOC)
1-21-11
7:10 PM

Laurie I watched that broadcast, I was in treatment, I was awed. You are right he was a big voice, a big presence and extremely articulate.

He gave to those of us in the midst of treatment a clarity, a hope, an idea the we are more than the disease, that we may not win but that we shall not lose.

I do not know of ‘happily ever after’ endings, seems they are a thing of the movies and our imagination. I do know that Leroy spoke to patients with clarity and purpose and you have done the same for caregivers.

Kathie Scott (KTS)
1-21-11
6:37 PM

My hat’s off to you for watching the DVD. I can hardly look at the many photographs of Jim and I just can’t pull out any video he is on but I want to so badly. I had all the stuff on his cell phone transferred to mine so I would have the photos and videos he had. There are a few “shorts” on there mostly of the cat and dog and one of his mother. I have looked and listened so hard just hoping to hear him say something or even just breathe but there’s nothing, yet I can’t pull out home videos. You’re right…there is no happily ever after.

1-20-11
5:03 PM
A Show of Support

There is no such thing as too much support when it comes to fighting cancer. Without it, there is no fight.  Sure, the cancer patient has to make-up his mind to take on the beast, but without a support group to back-up that decision, what’s the point?

The support brings with it, strength, hope and a wall to lean on when things get really hard.  And they do get really hard.  I don’t care who has the cancer or what type it might be.

Support also means laughter, conversation that isn’t about cancer and friendships that deepen with every visit.

Support can make a bad day in cancer world turn into a day worth living.

Everybody wins.

Comments:

Ned Lemon (Ned_L)
1-20-11
11:18 PM

Someone leans on you. You panic because you think a lot of time was wasted and you wonder what happened to the straight up world. The dreaded fall is going to hurt, but with the effort came strength and you realize nothing could be worse than never standing up.

Al Cato (tennisbum)
1-20-11
6:22 PM

Support is essential for the patient, caregiver and family. Initially, the support flows freely and often and everyone is fired up to do what they can when they can based upon the needs of the patient and family. As we all now, the fight is a prolonged one, weeks spill over into a year and then another year. Often the support begins to become less and less until it falls to the family and those few dedicated friends to do the work to help the family cope. The T-shirts and ball caps have been forgotten. We are now into the “hard lifting”. Let us all pledge that when we sign-on to the support team that we are there for the long term or the support is no longer needed. The patient and family are committed so let us also be there when the long grind of treatments and surgeries and more treatments and more surgeries are necessary. You will be doing a really good thing. It may never be openly acknowledged but you’ll know. It’ll make you feel good down to your bones!!!!

1-19-11
7:43 PM
No Wiggle Room

How do we put our arms around a cancer diagnosis?

It’s such an individual mind game.

My friend who is home, healing from breast cancer surgery told me today her “head is in a good place.”  She said all cancer is gone now, she’s preparing for chemo to kill-off any cancer cells that may have stayed behind.

It was very matter-of-fact.  Surger, chemo, probably a little radiation and good-bye cancer….period.

It’s the only way to face this beast.  Can’t give it any wiggle room…can’t give it any place to hide.

I love her determination and she’s just a week into the fight.

Comments:

Nan Holmes (BigMailbox)
1-20-11
3:25 PM

My niece says “I don’t have cancer anymore. It’s gone.” But I know worry is not gone.

Al Cato (tennisbum)
1-20-11
11:28 AM

I wish her the best. The battle has begun and she knows it. Nevertheless, the fight will take its toll on her both physically and emotionally. Through it all, as Ned says, Hope is life sustaining, spirit sustaining and it is a beautiful thing!!! She’ll need much support and encouragement as her journey continues. We are here for her.

Ned Lemon (Ned_L)
1-19-11
9:59 PM

Hope is so beautiful.

1-14-11
5:40 PM
Cancer Strikes Again

It’s been a pins and needles kind of day.  It actually started last night when word came that cancer had struck close to home..again.

Leroy’s “Nightline” staff was as close to being a family as you could get.  They weren’t blood relations,of course, just a close knit, extrordinarily talented group of journalists who came together in a news room.

You’ve heard me talk about the Halloween Party over the years, so you might imagine that as hard as this gang worked, they also partied together…and they did that with gusto too.

Work related, or not, we all spent time together and have stayed in touch since the show changed and almost everyone went off to new challenges.

So when the phone rang with the news that one of the family members was having breast cancer surgery today, the world stopped for a moment, while the shock bounced off my heart.

I thought about Leroy’s first message here.  “Your world is never the same.”  “It’s sad” and I remember when he said “It’s worth the fight, because it a life.”  “A life worth fighting for.”

Tonight, word spread that she came through surgery with the good news that early reports show no signs of lymph node involvement.

She has a fight ahead of her, there’s no denying that, but she’s strong, healthy and determined.

But more than any of that, she has a wall of supporters ready to lift her and carry her through the worst of what’s to come.

This “family” has been there and done that and can do it again. They rise to these occasions.

Comments:

Nan Holmes (BigMailbox)
1-18-11
10:05 AM

When we know the toll that will be taken, we stretch out our hearts to be there for those who are beginning this hard journey.

Maureen Doallas (Mo_D)
1-17-11
9:54 AM

I still want to scream every time I learn that someone else is experiencing cancer. We’ll keep your friend in prayers. Even as we learn such news we also learn of continuing efforts to help. Interestingly, there is a story in today’s Post about a survivor of melanoma who is creating a “Cancer Commons” app that will integrate data on the cancer’s different forms and experimental treatments. The story is here: http://www.washingtonpost.com/wp-dyn/content/article/2011/01/16/AR2011011602078.html?hpid=sec-health

Brady Merrill (SAOC)
1-15-11
11:20 AM

Laurie another joins the club that no one wants to be in. As you have pointed out, here is where she can come to talk, to vent, to ask questions and get answers and ideas. She can come here and see the messages of hope, lifting and caring expressed every day, she can be reminded she is never ever alone, that the burden has been split and shared. Laurie I remember Leroy’s words, they never failed to help me make it another day, then another, till now I look back and it’s coming on five years and I begin to know what ‘a life worth fight for’ is and means.

Sasha Degaspar (Dolly)
1-15-11
10:30 AM

I’m so sorry to hear about your friend. However, the good news is that it did not affect the lymph nodes. It sounds as if her prognosis is good……………lifting

Al Cato (tennisbum)
1-14-11
7:01 PM

Sorry to hear about your friend. “It’s not in the lymph nodes” is about as good as it gets initially. The reason I say initially is that we reach and lock onto any words that say that the beast has not spread. We’ll not know for sure for awhile but until some time has passed, scans have been done and NED has taken up residence, the initial reports are what we should latch onto to get us through the next weeks and months. HOPE is the message that those words convey as they should. Let us pray that the beast has been excised forever so that the physical and emotional healing can begin. Family and friends can be such an important part of her healing. Tell her to come and talk with us…we know her feelings, fears but most of all we know the value that HOPE plays in the healing process. Let the Little Light of Hope never be extinguished.

1-13-11
4:18 PM
Make the Call

I could hear the anxiety in her voice.  She hadn’t slept, she was on edge and it was all because her doctor hadn’t called with the results of a test.

It’s safe to say many of us have been through this ourselves.  We go in for a test, it could be routine, it could be for a problem we’re having, but the results are critical to our peace of mind.  The doctor tells us it will be a few days and we’re OK with that, not thrilled but we understand the lab isn’t our lab, it’s a lab that processes many samples and slides every day.  So we try to be grown-ups and we don’t call and we don’t email and we wait.

Then the timer goes off in our heads, and we haven’t heard from the doctor so we call. We’re told the doctor has to read us the results and he’s with another patient, so we wait some more. Should we go to the grocery store?  Should we go to the gym, to the mall? NO, we’ll wait by the phone, for the call.

There is no call.  At least not that day and now we’re convinced the lab has found something awful.  The thought bounces around in our head all night long like a ping pong ball and we’re a basket case by morning.

And the wait starts all over again, along with the anxiety, until the doctor finds the time to make that call.

MAKE THE CALL WHEN YOU SAY YOU WILL…It’s a simple courtesy, a part of the doctor/patient relationship and it’s not too much to ask.

Comments:

Sasha Degaspar (Dolly)
1-15-11
10:27 AM

Fortunately, my son is a physician, so he would get John’s test results for us very quickly. However, even an hour would feel like an eternity when waiting…..so I can just imagine having to wait for a long period of time.

Kathie Scott (KTS)
1-13-11
7:03 PM

Oh my goodness, how many hours did we wait with stomach in knots waiting for test results. Sometimes I would not hesitate to call when I thought an appropriate amount of time had passed and sometimes I would be to nervous to call afraid of what they would say. I know most doctors have not been on the other side of the fence so they do not know the anxiety of waiting but surely someone somewhere along the way has had this discussion in a class. If I could get one simple message to the medical field this would be it. Laurie, you have a wide audience so maybe you can help spread the word.

1-12-11
4:48 PM
Snow Day

The clouds remind me of giant gray hands with out-stretched fingers holding on to the wind as it pulls them across the sky.  It is cold and blustery outside and last night we got the first real snowfall of the season.  I say “real” because that meant I had to go out and shovel.  It wasn’t a heavy snow, but just enough that I knew it was time to find the big red shovel that’s been in dry-dock in the garage for three mild seasons.

I’m one of those helter-skelter snow clearers…no rhyme or reason to my method of scooping.  It used to make Leroy crazy.  He would have a system so precise and I’m sure it was a faster way to get the job done too.  He’d watch me as I’d begin at the street, get bored, change locations and start in another spot.  The object was to meet in the middle, job complete, get in the house and get warm.

What’s the fun in that?

I think back and smile at those times.  I love that I have those snowy days from years past ready to roll inside my head at the first sign of a snowflake.

I can put on my boots, layer-up and head for the street-end of the driveway.  That’s where I’ll start, but I won’t stay there long….my memories will take me somewhere else.

Comments:

Sasha Degaspar (Dolly)
1-13-11
7:08 AM

Here in New York we have been getting hit quite bad this past few weeks. Fortunately, my son comes and shovels for me. Unlike Leroy, John hated to shovel snow. He would find a couple of the neighborhood kids who wanted to earn a little extra money and have them shovel for us. I could visualize him now looking out the door and watching them……..I would call him ” The Lazy Director”……….Sweet memories

1-11-11
4:59 PM
Winter

Winter on my street is gray and cold and frosty.

The sun doesn’t shine much on my street these days.  Winter has spread it’s narly coat over the sky and if the sun is allowed to peek through, it’s only for a few short hours and before you know it, evenings’ darkness has taken over what is left of the day time hours.

I look up in the sky and I can almost see the ice crystals clinging to the moon.  It looks like an old black and white photograph.  It’s grainy and textured and the only thing missing is the sound of a predator howling from miles away.

On my street, no one goes outside much…there aren’t enough layers to block this kind of cold.  So it’s a perfect time of year to gather friends near and share stories and find reasons to laugh and shake-off any signs of the blues.

Winter is a season that begs for a crackling fireplace, hot soup and crusty bread.

Winter on my street makes me think about Spring.  It’s a long way off, but I know eventually the ground, that is frozen now, will thaw and give way to new growth…new beginnings and longer,brighter days.

Winter on my street is beautiful.

Comments:

Sasha Degaspar (Dolly)
1-12-11
7:36 AM

I’m not fond of winter; never was. I think I was in much better shape emotionally during the summer months. I feel as if I’m sinking into a bit of depression now, especially after struggling through the holidays. I don’t want to wish my life away, but, I can’t wait for spring ! ………lifting

1-10-11
5:07 PM
A Day in the Life of a Care-Giver

I’ve been up at Hopkins all day.  It was over-flowing in the waiting room at the Cancer Center.  Way too many patients sitting with their care-givers.

I ran into a familiar face.  She is the loving wife, super care-giver to her husband who is suffering from a form of lymphoma.

I met these two in the infusion room a few months ago when I was putting together the new introduction to chemotherapy at the Kimmel Cancer Center.  They were generous enough to allow our cameras to tape his treatment session.  These chemo’s can often be uncomfortable and create unpleasant side effects, but this couple felt, if this helps others, they would participate.

Since then, this woman’s husband has had a bone marrow transplant and even though he’s gone through tough times, he’s now in outpatient status.  That’s a little good news and a little bad news, she explained:

When he was in the hospital, the transplant floor was filled with the best nurses.  They watched him like a hawk, keeping an eye out for any little flutter in his condition.  When she went home at night, she felt secure in knowing he was in good hands.  There’s something to be said about peace of mind.

Once he was well enough to leave, he was still considered an In-Patient/Out-Patient or IPOP patient.  That meant they could live somewhere close to Hopkins and make daily visits back to the transplant floor where his condition was still closely monitored.  This care-giver had a little more responsibility but was still under the watchful eyes of the transplant team.   Her security blanket was still in place.

Now, he has moved to an “out-patient” status.  Regular appointments and they are back home trying to pick up pieces of their old life.  You would think this would be the best of all worlds….but you’d think wrong.

She was telling me today, she’s never been more nervous.  She watches him constantly, worries endlessy and is always imagining the worst.  It’s a care-givers nightmare.

So much pressure is back on her shoulders.  Watching for signs of transplant rejection in addition to the rest of what cancer care-givers do day to day.

It’s all part of a day in the life of a care-giver.

1-7-11
3:06 PM
Click Your Heels

Packing up and coming home. The close monitoring of blood levels and graft versus host issues aren’t over yet, but my friend Bruce is homeward bound…finally.

He’s lived through nine months of hell.  Getting a diagnosis of a very bad leukemia started this journey.  I watched him change shape.  He lost 40 pounds, he lost his hair, at times, he lost his great sense of humor too.  All typical signs of living in cancer world.  He soldiered-on and when the doctors found a perfect match, he faced the unknown realm of bone marrow transplant. Would his body welcome the new marrow?

On the human side of this ordeal, his family would be there for him of course, but what would that mean? They certainly wanted to grant his every wish.  Anything to make him feel better.  One day he would have cravings for chocolate covered peanut brittle and the next day something salty. A sno-cone and then a steak.  And so it went.

His red cells multiplied, his white cells stepped-up too.  He had his share of bad things related to the transplant but overall it looks like he’s made it past the toughest part.

So even though he’ll be making the trip up to Hopkins as an out-patient a few times each week, he’ll be sleeping in his own bed at night.  The family will be together once more.

Dorothy was right…”There’s no place like home.”

Comments:

Nan Holmes (BigMailbox)
1-10-11
9:58 AM

Based on husband’s experience, when a person can sleep in their own bed, it helps so much. Also, I feel the need to use this moment to ask everyone to be thinking of the people who were impacted by the terrible incident in Tuscon. Nightmares come in all varities.

Al Cato (tennisbum)
1-8-11
6:55 PM

Great to hear some good news about Bruce ! A young girl I know, 17, had leukemia. Underwent a bone marrow transplant with marrow from her sister. Looked great and finally she went home. Started feeling not so good. Back to hospital for a checkup. The bone marrow transplant failed to take and eradicate the leukemia. She has undergone another transplant from a non-relative. Is now home and things look good for the moment. She and her mother have spent about 3 months in the hospital as she has fought the beast. I pray that she’ll win her battle this time. She is so fragile now that any infection can cause a very serious set back. A terrific family with her brothers and sisters by her side. Once the battle is begun, there can be no stopping. As we know, cancer is relentless and only needs a tiny toe-hole to wreak its havoc. I have a cousin who is 84. Just diagnosed with glioblastoma. He’ll begin treatment with radiation and chemo to try to buy some time. The prognosis for this type of brain cancer is very poor. Look the beast in the eye…fight until you decide “it’s enough”….and that’ll be OK. He’ll join many of the family members in the family plot at the cemetery in the little town where we all began our lives.. A quiet, peaceful and serene place surrounded by many loved ones. One day, I shall join them . One by one we are all coming home.

Ned Lemon (Ned_L)
1-8-11
9:50 AM

My friend is home from the hospital. Her joint replacement surgery went well. I know there is a lot of pain and stress involved, but the procedure is an investment in a better future. The prognosis is bright and full of opportunity. Those on the outside of cancer/chronic disease world need to reflect on the remarkable capabilities of modern medicine. It’s not a perfect world.

Brady Merrill (SAOC)
1-7-11
8:07 PM

Laurie it’s always a treat to hear of another person that gets to be home and ‘normal’ as possible while still being in crazy land. Congratulation to your friend and his family, may the return to home be wonderful and long.

1-5-11
4:57 PM
Our Toolboxes

Where did you store your toolbox?

Is it under the bed? Is it in the medicine cabinet? Maybe, it’s under your pillow? I’m talking about all the tools you used when you were a cancer fighter.

You needed your armor everyday to face the beast. From the moment you got up in the morning until you went to bed at night, that armor protected you from the the deep wounds this disease left in it’s wake.

If you were like me, there wasn’t time to feel the pain then….We all had work to do.  We were there to supply the diversions, the constant distractions that kept the cancer off balance.

We supplied the massages that eased the muscle pain caused by the radiation.  The foot rubs that relaxed and soothed a tired cancer body.  We baked the chocolate chip cookies that worked many more miracles than any chemo could.  We played cards and board games into the wee hours of the night.  We watched the same favorite movies or old, bad TV shows and laughed together even though we could recite the script.

We held tightly to the hands that held each of us for so many years, until they let go.

We did it because we loved our cancer patient.  They weren’t cancer patients when we fell in love with them.  They were special people who held special places in our hearts.

These were toolboxs filled with instruments of care and love. They all show signs of wear-and-tear now, but a good toolbox is like that.

In cancer world, we use our toolboxes.

Comments:

Ned Lemon (Ned_L)
1-5-11
7:17 PM

Yes-tools are a good analogy. We start looking for weapons-that’s not going to…work. Maybe the doctors and labs have an effective arsenal but the layman’s task is to hold together-to latch on-to bolt down-to build up. We never think in terms of “job well done”-maybe we should.

1-4-11
4:37 PM
Special Hero’s

None of us asked to become a care-giver, but we were up to it when the call went out.

When Leroy got his diagnoses, it never occurred to me that someone else would take care of him….ever.  We made a promise to each other the day the doctor looked at us and said we were looking at a tough road ahead…we said we’d fight cancer as one and that’s what we did.

Patient and care-giver.  Neither one of us had been in those roles before and we certainly didn’t know what was ahead of us, but we learned..quickly.

I’ve always said care-givers are life-givers.  Not only do we step up to provide love and attention to the ones we love, but we give them a reason to want to go on living.  They fight harder because there is someone at their side who is in the battle too. Care-givers send the message that the battle is worth it.

If the cancer scores a combination punch…it takes the life of the patient, that’s the death blow. Then comes, what so many of us have felt in this community…the direct hit to the heart.  We are rocked off our feet for a while, but eventually we regain our footing.

We’ve also learned how tough we can be, when we’re called upon to do the toughest job on the planet.

This one is for all you care-givers out there.  You’re all heros in my book.

Comments:

betty obst (bettyoops)
1-5-11
11:40 AM

I always treasured the opportunity to be the caregiver to my daughter and my husband. It was tough at times (well, a lot of the time) but it gave me so much satisfaction that I was doing whatever I could to help them through this time. I was extremely grateful that I was healthy enough (and near enough; she always lived across the country before) to care for my daughter. I comforted me at lot, after she passed, to know that I did my best. With my husband, he required a lot more nursing care, but once he started his treatments, he preferred to go on his own. I accompanied him always though, to get the results of the tests. My health worsened during these past few years but luckily, when I was down, he was feeling really well and was able to care for me. When I was well, it always seemed to be when he was failing. We have both felt very fortunate that it worked out this way and hope that it will continue. Difficult times yes…but the reward it brings is a closeness and stronger love for each other than ever.

Brady Merrill (SAOC)
1-4-11
8:26 PM

Laurie i have always said caregivers are special and so needed. y’all have to take all the blows, feel helpless and lost yet continue to sooth and protect as much as possible. an incredible job to do, showing true tuffness and grit throughout. i bow my head in the greatest respect to all y’all who have battled the ‘beast’ as caregivers.

Kathie Scott (KTS)
1-4-11
7:55 PM

Care-givers are indeed heroes because they have to be the care-giver and so much more just to get through each day. Until you have been one you can’t imagine how hard it is but just ask one if they are glad they had the opportunity and there will be a resounding YES! For those of us who have lost our loved ones, when the care-giving is done the pain really begins. If you want to see real heroes, look at a cancer family.

1-3-11
3:39 PM
Winter’s Bite

Winter took a little vacation from the Mid-Atlantic region, just like a lot of us.  It went north for the Holidays and I can’t say that I missed it.  Maybe it’s the Southern Californian in me, but I’ll take a mild day in the 50’s over a snowy Currier and Ives landscape any day.

But the wind shifted late yesterday and this morning Old Man Winter was back on my door step. Time to layer-up and warm-up.

I spotted him on the corner of a busy intersection.  A man looking much older than his years.  Worn down by the wind and cold. No layering for him.  A thin old coat and cotton pants..hardly enough to beat back icy air.  HIs sign said he was without food or shelter. Motorists would stop at the light, lower their windows and put something in his hand.  He politely thanked them.

This scene sent me to a closet in my house where warm sweaters and heavy coats still hang, untouched for two years and four months.  I filled two big bags of extra-large warmth and dropped them at a place where they will do some good.

Shame on me, I would look in the closet and remember better days, when I should have realized, these sweaters and coats would provide better days for those who need a break against winter’s bite.

I think Leroy would approve.

Comments:

Brady Merrill (SAOC)
1-4-11
8:08 PM

Laurie of course he would! seems you have made another huge transition out of the ‘beasts’ cave of darkness, he would also love that.

Kathie Scott (KTS)
1-4-11
7:48 PM

Laurie, you are absolutely right..Leroy would approve because, as always, the two of you were helping someone else survive. Ned, Hope you get some rest. I have been back to the hospital where Jim spent his last week twice and it has been a struggle to go through the front door. I’m sure your friend is very grateful.

Ned Lemon (Ned_L)
1-3-11
11:38 PM

Good for you.-just wonderful. I’m not doing so great. I’m completely exhausted. I returned to the role of caregiver for the weekend. I spent New Year’s Eve in a hospital with my friend who had a joint replacement procedure. A lot of memories came flooding back-over the dam-just floored me. Lots of drama,lots of work -I’m mentally and physically wiped out.

December 2010

  
12-30-10
5:05 PM
Sitting on the Edge…

We’re on the edge of a new year.  The way I see it, we’re sitting on top of the world dangling our feet over the edge and watching as it slowly turns,one last time around, marking the end of this year.

There’s no way we can remember every day and what it meant to us.  I’m not sure we’d even want to relive all 365 days.  But there are some days we’d all like to remember because they probably marked changes in our lives.  I’d like to think there were more days when we remembered the good times instead of aching at the thought of our lost love.

In this community, days and nights have taken on new meaning.  We’re different than we were a year ago, two years ago and beyond.  We’ve been touched by cancer and once that happened, our outlook on life, our personalities, how we celebrate and how we don’t celebrate reflect how the beast left its mark.

We have a great opportunity here and we need to jump at the chance to make this coming year a better one.  More smiles, more giving back, helping someone who is facing cancer and could use a veteran of this war and their expertise.

Come on…time to scoot off the ledge as this new year begins and lift.

Happy New Year everyone.

Comments:

Nan Holmes (BigMailbox)
12-31-10
7:17 PM

We honor those who have left us by living life to the fullest, even when it is so hard to do. For those surviving, we are very grateful for each day.

Kathie Scott (KTS)
12-31-10
7:11 PM

Sasha, you are right, it is time to pay it forward and I hope this year is the year. I’m still dragging myself out of the house just to go to work but maybe a new year a new outlook. Happy New Year!

Sasha Degaspar (Dolly)
12-30-10
10:27 PM

It’s time to start paying it forward………….Happy New Year to all……

12-29-10
5:06 PM
My Resolutions are….

We need to start thinking about our resolutions for the new year.

I’m not talking about the promise to drop those ten pounds that have been hanging on since college.  I’m not talking about resolving to keep the cabinets and drawers more organized either.  I’m talking about the resolutions that will put us in a better place.  For those of us who have suffered loss, we need to set goals for ourselves.  Something that will take our left foot and put it in front of our right foot time and time again.  Moving forward, I think they call it.  What can we do to help each other carry our loss gracefully?

And for those of you who are caregivers these days, you need to make your own list of resolutions that will allow you to breathe while you live in cancer world.  Map out some time for yourself.  Schedule short breaks in the day devoted to your world.  It won’t be easy, but it will save you.

I always thought making New Year resolutions was a joke.  A good ice-breaker at a party.  Now, I get it.  When your world has been turned upside down and you’re still expected to function in a rightside-up world… you’ve got no choice but to make changes.

What better time to start than January 1st?

Comments:

Brady Merrill (SAOC)
12-30-10
3:27 PM

Laurie, Sasha and all, as care givers you did all expected and more, now on your own you have steadily put one foot in front of the other. You may not think of any of this as progress or forward movement but it is.

Take a moment to wonder at where you were a year ago, or two, or six months ago and where you are at now and ponder the progress, big or small as it may be or seem. Congratulate yourselves, know that your loved ones are proud of what you have done and accomplished, I certainly am.

To all Happy New Years, may it be safe and kinder to us all, as always we remain here to help and support those who have already paid to play with the ‘beast’ and those just entering into the arena.

Sasha Degaspar (Dolly)
12-30-10
6:43 AM

Happy New Year to All………….Yes Laurie, we don’t have any choice but to make changes. But, I think we started making those changes the day our loved ones passed. Life is so very different now. I think a good New Years Resolution should be to try and adjust better and maybe look at it as a new chapter in our life. However………….very easy say and put down on paper…….doing it is another story !

12-28-10
3:48 PM
“FINE”

It’s probably not a good idea to ask a care-giver about the holidays.  It’s a well meaning question and the answer will probably be “oh, great…” But truth be known, everything wasn’t fine and the holidays weren’t great.  They were stressful.  They didn’t have the same excitement or anticipation because cancer was in the house.  Worse yet, cancer caused the loss of a loved one and there’s no mending that heart-break this time of year.

In our own way, we try little tricks to get through these few weeks.  The experts tell us to keep busy.  They say to try and join in…feel the spirit of the season.  I say, do what feels right and if you don’t feel like “joining in” for heavens sake…don’t.  It’s been my experience that these doldrums will pass in time.

And, not to make matters worse, when someone asks “How were your holidays?”  Smile politely and just say “fine.”

Comments:

Sasha Degaspar (Dolly)
12-29-10
7:12 AM

I think we have a tendency to stay on auto pilot during the holidays. We have to push forward and go through the motions. I’m glad Christmas is over…………now to get through New Years Eve…..that’s another story !

12-27-10
2:35 PM
Christmas Past, Christmas Present

So, how did it go?  How was Christmas for everyone? Did you make new memories, while holding on to Christmas past?

I had a nice surprise.  Leroy’s two nephews called on Christmas Eve and we had a wonderful evening of good food and good catching-up.  These are two terrific young men.  Smart, savy, young adults who will rock this world some day.  By the time we parted company, I was so thrilled they shared the evening with me, but at the same time, I was so heart-broken Leroy wasn’t there to have been a part of it too.  He thought the world of these kids.

They remind me so much of Leroy as a young man. Big plans, big lives ahead.

On Christmas Day, I made my way to the canal with flowers in hand and a few special words for the Big Guy.

New memories made and old ones remembered.

Comments:

Kathie Scott (KTS)
12-27-10
7:00 PM

As usual Christmas was hectic, like it is for everyone, so I was busy and not alone with my thoughts until the night came. Nothing ever seems to change as far as the darkness is concerned. I am alone in an empty house no matter what the day was like and it is still overwhelming sometimes. I feel like I just need to escape to somewhere but there is nowhere to go that will provide comfort because Jim will not be there. I look at lovely warm islands and I think it would be wonderful until I realize we cannot share it. I just can’t seem to make new memories yet and the old ones tear my heart out rather than comfort. Everyone asks “how was your Christmas?” and the standard answer is “it was fine”. They don’t really want to know and that’s ok.

12-23-10
3:52 PM
Celebrate

It’s been a busy day of last minute Christmas time errands.  Oh, the traffic and are some folks a little crazed out there? YES.  But it’s an engery that you can’t really feel any other time of the year.  We all need to feel it, no matter what direction our lives have taken.

No matter if we’re not with the ones we loved this holiday..we have got to inhale the energy of the season.

Do that by surrounding yourself with family or friends or take out old photos and remember them.  It will be difficult, it always is, but put them in your heart and celebrate.

So with that in mind, I’m wishing all of you a safe, loving and happy holiday.

Comments:

Maureen Doallas (Mo_D)
12-25-10
9:37 AM

Sending love, hugs, and blessings for a lovely day and wishes for a brighter New Year. Merry Christmas, everyone!

Nan Holmes (BigMailbox)
12-24-10
4:09 PM

Merry Christmas, dear friends. You have been so important to me this year and I am sure we will all need each other in 2011.

Brady Merrill (SAOC)
12-24-10
7:00 AM

‘Merry Christmas to all and to all a good night’ my favorite wish for all!

Sasha Degaspar (Dolly)
12-24-10
6:26 AM

Merry Christmas Dear Laurie and to all my friends here at OC……….lifting

dorothy morris (dorothy_oregon)
12-23-10
7:56 PM

Laurie, I wish you a Merry Christmas. Thanks for all you do.

Kathie Scott (KTS)
12-23-10
7:17 PM

Laurie, I hope you will be with family and friends for Christmas. It is difficult but it is a time for memories some happy some sad. Merry Christmas to you.

12-22-10
2:49 PM
Christmas Time and Shopping Malls and Cancer

While the malls are full of last minute shoppers and cars are backed up trying to squeeze into the parking lots, I just got back from Hopkins where the scene is a mixed bag of beautiful Holiday decorations and cancer patients finishing up their treatments and looking forward to a little Christmas break.

I went up there to lend a little support to a first-timer friend of mine. The first face of Hopkins for her was a friendly, polite woman who greeted us with “Happy Holidays.”

She was checked-in and was off to meet the doctor.

It was a quiet day compared to most days up there.  The pace was slower.  Except for the lady who walked past me with tears in her eyes as she quietly talked to herself.  And the young girl dressed in many layers of sweat clothes, trying to stay warm, wearing a mask and a hat pulled down over her bald head.  And the man being transfered from the cancer center into the hospital…his bed on wheels being pushed by an attendant while the worried young woman kept pace, holding his hand down the hall.

Christmas time and cancer. I bet anyone of them would take the crowded shopping mall and traffic jams.

Comments:

Nan Holmes (BigMailbox)
12-22-10
5:52 PM

Cancer–that’s a real live Mr. Grinch.

 

12-21-10
3:13 PM
Dreams

Did we get the short end of the dream?

I was in a group of women the other day who got carried away in conversation about their lives.  They were swept up in chatter about where they wanted to be in life as the years fly by and what their plans are for the future.  I mean this wasn’t about going to the movies next weekend.  I’m talking about the future, as in, a list of exotic vacations, retirement homes and growing old with their mates.

I felt almost uncomfortable just listening and I guess because of my life’s path, I was a little stunned that these people never had a thought that maybe all of this wonderful planning wouldn’t play out.

A voice inside me wanted to scream…”What about cancer?” “What if your loved one gets cancer and dies?”  “Where is your dream if that happens?”

Maybe it was an over-reaction to what probably was just innocent conversation, but it got me to thinking, did we get the short end of “our dreams?”

I know we all had them.  I certainly did and these days, I’m not so sure I could come up with an answer, if some one asked me what my dreams are today.

Maybe that part of living returns, as the heart continues to heal.

Comments:

Dee Bee (wyobear)
12-27-10
12:19 PM

Cancer hasn’t entered my life so far but other things have derailed dreams. So I very much relate to this post. I sort of quit dreaming too so as not to get disappointed anymore. The older I get, the less I dream. But maybe thats normal.

Nan Holmes (BigMailbox)
12-22-10
5:49 PM

This is a little late, but those conversations are a reminder to live in the day. Life just doesn’t turn out the way we imagine.

dorothy morris (dorothy_oregon)
12-22-10
3:48 PM

Laurie, I could not answer that question either. There are no dreams. It seems my heart is empty.

Dianne West (Dianne_in_Nevada)
12-22-10
10:17 AM

I’ve heard those same conversations at work – even after we’ve had such a tough year. An employee was in a horrific motorcycle accident but died from pancreatic cancer during his accident recovery. A 30-year employee retired and passed away from a heart attack just a couple of months later. Another left to care for her critically ill mother in Chicago and dropped dead at 43. Another was just diagnosed with metastacized pancreatic cancer. The fact that life doesn’t always turn out as planned is evident, but I guess it’s human nature to ignore it. Today marks 3 months since Vern passed. I no longer have any dreams, other than knowing I will eventually reunite with my beloved.

Sasha Degaspar (Dolly)
12-22-10
7:28 AM

I always dreamed of John and I growing old together. I had 42 years with this beautiful man in my life. There are so many people who have never experienced the joy and happiness of a 42 year relationship with someone they love. So yes, I did get the short end of the stick, but at least I lived the dream for 42 years. A few weeks ago I posted a link for a song on You-tube. The song is called ” The Dance ” by Garth Brooks. This song says it all! I don’t know if anyone listened to it. The song asks …..”If we could go back and change things would we?” …….then continues to say ” Life is better left to chance……we could have missed the pain……but we would have had to miss the dance ”

Kathie Scott (KTS)
12-21-10
10:07 PM

I remember a co-worker of mine telling me all about how many years he had to retirement and how everything was going to be in place so it could happen and I, like you, wanted to scream at him “don’t count on it happening”. We had dreams of retirement down the road after we had completed some more projects and could be more comfortable. Cancer had another plan and now I wonder what the point is in dreaming. My dreams included Jim and he’s not here and I don’t have back ups. Maybe someday but for now I just can’t see it.

12-20-10
2:43 PM
A Birthday to Remember

Happy Birthday, Bruce!

Yes, my pal, Bruce is celebrating his birthday today.  When I spoke to him on the phone this morning, he sounded strong.  He said he was happy to be here too! Sometimes we take that for granted, don’t we?  I know this community doesn’t, but the rest of the world, not tainted by cancer, tends to assume each day will just be great.

We know differently, don’t we? And Bruce certainly knows that too.  He’s got two birthdays now…his real “birth” day and then the day the bone marrow transplant happened.  Talk about a “rebirth!”  So far, he’s the face on the poster for transplant success.  (Knock on wood!)  His body is doing everything it’s supposed to do while this new marrow creates a new, healthy immune system with no sign of the leukemia.

So, what was he doing this afternoon to celebrate?  Sitting on the couch and reading the newspaper.  Relaxing and enjoying the day.

Just like someone who doesn’t have a care in the world.  Just like some one who takes each day for-granted.

He gets to do that…it’s his birthday!

Comments:

Kathie Scott (KTS)
12-20-10
8:35 PM

Good for Bruce! Each person has their own idea of what a celebration is. Having a birthday, sitting on the couch and reading the paper sounds like a good day.

12-17-10
3:15 PM
Does Cancer Take a Christmas Vacation?

Where does cancer go for the Holidays?

Silly question? Sure it is, but I’m thinking back to Leroy’s days of chemo.  As Christmas got closer his treatment schedule was moved around to accommodate our plans and the plans of his nurses and doctors.  Even the infusion room slowed down to just a trickle of patients.

Cancer takes-up so much energy the rest of the year, it was the perfect time to break from this intense battle and soak up the positive vibes of the Holiday rush.

I would watch Leroy recharge just looking at the decorations and listening to the music of the season.  He’d lose himself in the trimming of the tree and the house would fill-up with good friends and constant conversation.

There was no better medicine to chase away the cancer, than the Christmas season.

So maybe the question isn’t that silly afterall….no matter where cancer went for the Holidays….I’m just glad it left us alone for a little while.

Comments:

Maureen Doallas (Mo_D)
12-21-10
9:24 AM

Thinking of all of you and wishing you the peace and beauty of the season. Merry Christmas with love. ~ Mo

Dianne West (Dianne_in_Nevada)
12-20-10
10:26 PM

I’m so grateful that you are all here. Knowing that you have walked this same path provides me with the strength to keep walking forward to my new future. Bless you.

laurie singer (sings)
12-18-10
4:35 PM

Dianne,

Not only are we here…we’re HERE for you. Take long walks, listen to music, cry a little..all these things help your heart and your head. And stay in touch with us…you may not be able to see our hands, but we’re holding tight.

Laurie

Brady Merrill (SAOC)
12-18-10
3:41 PM

i remember sitting in the infusion room, counting the bags, watching the drips, wondering would i make the next one. the holidays seem to slow the cancer time down giving you a chance to enjoy and feel the happiness flowing around you.

it was a nice break from the feeling of being swallowed by the ‘beast’.

as you know all to soon we were all brought back to the real time ‘beast’ and the crushing weight of it’s demands.

may y’all feel the happiness, joy and hope of the season and remember the better times spent before the ‘beast’ came.

Sasha Degaspar (Dolly)
12-18-10
6:10 AM

Dear Diane, My heart hurts for you. And, I know what you mean about the memories. Memories are nice, but when you are in this much pain, sometimes it makes us feel worse when having to reflect on them…….at least that’s how it is for me. We will all get through this together…………..lifting

dorothy morris (dorothy_oregon)
12-18-10
12:20 AM

So very true Laurie. We needed those few quiet days…Dianne, my heart is really with you. Please know that we are all here walking with you.

Dianne West (Dianne_in_Nevada)
12-17-10
10:18 PM

I’ve been out of town for the past week+. Couldn’t handle being at work for all of the holiday lunches and parties, so I took some vacation time and won’t return until it’s all over. I’m not putting up a tree this year – too many memories that I’m just not ready to deal with. I don’t have any grandchildren, so this is easier for me to do. It was good to go away to a place Vern & I hadn’t been since there weren’t any memories for us in the Florida Keys. Our adult son went with me and we were able to create some new memories. We did, however, decide to make a quick 1 day stop in Michigan to see family – and that was where we spent the first 13 years of our marriage, so there were many memories there. I’m happy I got to see family and friends, but one day was plenty long enough to be there. Now I’m home and need to figure out how to get through this next week. Happy that my OC friends are here.

 

12-16-10
3:18 PM
Life Changes Instantly

I’ve been reminded once again just how quickly life changes at the mention of cancer.

My neighbor woke up to find an odd inflamation on her hand.  She did the right thing and called her dermatologist.  He passed her on to a specialist who removed this growth and from there it went to the lab.  The pathology report didn’t nail down a firm finding from the sample, but what it did do was use words that suggested cancer.

I watched my friend’s world change in an instant.  She’s gone back for further consultaions and it looks like everything will be fine.  It’s probably nothing to be worried about after all.

These last few days have been hell for her.  She’s been worried.  She hasn’t slept.  She’s learned the meaning of panic.  All because of the word, cancer.

It’s an ugly word.  It’s an even uglier disease. And for those of us who weren’t spared the ordeal of living with it and watching as it took away our loved one….it’s a life changing journey.

The clouds have lifted from her world now.  NO cancer means all the pieces of a normal life fall back into place.

She’s been spared all the next steps.

Life is good.

Comments:

Sasha Degaspar (Dolly)
12-17-10
7:28 AM

I’m happy that your friend is going to be ok………….still lifting

Kathie Scott (KTS)
12-16-10
8:15 PM

I don’t think any other word strikes fear in one like cancer does. So glad your friend will be ok.

  

12-14-10
2:34 PM
Our Gift

Once again, this community has proven to be the safe haven for all of us to gather and speak from our hearts.

Those of us who have suffered loss feel the weight of our memories this time of year.

No one should have to apologize for this. Especially no one on this blog.  That’s been the magic of this place for so many years.  We open up and share here.

We all heal differently.  Some of us get stuck in our grief.  It’s not that the loss was greater, it was unique and circumstances influence how we move on.

So if you can’t unpack all those keepsakes that remind you of the “good ‘ol days” …don’t.  Maybe one little treasure is all you need to see you through these days.

Take is slow.  Gradually the magic of this season will find a way back into your head and from there it will make it’s way back into your heart.

But until then, you have all of us here, to hold you up and keep you safe.  It’s our gift to each other.

Comments:

Nan Holmes (BigMailbox)
12-15-10
11:04 AM

Dear cyber friends, one and all. You are here in times of sorrow and of joy. The perfect kind of friends to have.

Sasha Degaspar (Dolly)
12-15-10
5:40 AM

Thank you Laurie for the beautiful post………..this place is definitely what keeps us going…..lifting

dorothy morris (dorothy_oregon)
12-15-10
1:34 AM

Thank you Laurie for giving us this safe haven to come to.

Ned Lemon (Ned_L)
12-14-10
11:35 PM

Last Sunday,in a moment of lucidity, my mother told me that she missed my wife. She said that I should display some Christmas flowers-“she loved Christmas so-” -so that’s exactly what I did.

Kathie Scott (KTS)
12-14-10
5:20 PM

Thank you Laurie. This is the one and only place I feel I can speak my heart and I don’t feel like I’m bringing anyone down with me. I can come here and not be the cheerleader.

12-13-10
3:55 PM
Locking Elbows

Leroy’s Christmas stocking is hanging in the same spot it’s always been in over the years.

His grandmother made it for him when he was a little boy and it always meant Christmas to him.  For some reason it gives me a little bit of comfort to see it there with those little bells sewn on the red and green ric-rack trim.  It’s beginning to show it’s age, but I think that makes it even better.  I would stuff it with chocolate truffles every Christmas.  Now it’s filled with Leroy’s deep laugh, images of him stringing the old fashioned lights around the tree and sitting in front of the fire, listening to holiday music.

Over the years, we collected so many different kinds of ornaments.  They are tucked-in a box in the closet along with boxes of tinsle and the cutest little reindeer who would sit on top of the tree.

I did take out one ornament.  It’s a Hawaiian shirt with painted palm trees in tropical colors.  Of all the holiday things we accumulated over the years, that one says “Leroy” in capital letters.

Small steps…that’s all I can manage, as the past toys with the present. I’m doing the best I can and from the sound of it, we’re all doing the best we can.

Let’s lock elbows and get through this together.

Comments:

Brady Merrill (SAOC)
12-14-10
6:54 AM

Laurie, Sasha, Kathie, I hope the holidays can hold some happiness and loving memories for y’all. I am awed by how the grief can wipe away any traces of happiness, forcing one to remember only the sadness and sorrows.

I wish for every care giver, patient and survivor to feel the joy of holidays and the warmth of hope. This hope and joy is after all what has kept us going through all the darkness and despair.

May the tomorrows be lighter, may the hearts beat easier, may the sorrows float away, this is my wish and hope for y’all.

Sasha Degaspar (Dolly)
12-14-10
5:21 AM

Last year was my first Christmas without John and I didn’t put up a tree. This year I managed to put up a few decorations, but still no tree. I know this sounds awful and I’m so very sorry……..please don’t judge me…….but I wish it was January………..

Kathie Scott (KTS)
12-13-10
6:01 PM

I haven’t managed to go through our tubs of ornaments that represent 38 years of our life together. I bought generic ornaments to put on the tree I felt I had to put up. I can’t stand staring at all those memories but his red and blue neckscarf that he wore for 40 years is wrapped around it. That’s just all I can manage.

12-9-10

5:03 PM

Merry, Merry

Can you feel the pull?

It starts around this time every year. The sentimental journey of the Holidays. I hear so many of my friends talking about Christmas Past, or celebrations of family and friends and New Years plans. It just what folks do this time of year.

It’s a rough time of year for some of us isn’t it?

The shuffle down Memory Lane is full of cracks and potholes. We remember the great times and then like a whiplash, we remember the “last” time. It wasn’t so great.

The pulse of the holidays changes when cancer is the other “C” in Christmas. The energy that went into baking, wrapping and laughing shifts to rescheduling doctor visits, restocking meds and planning chemo sessions around the big days on the calendar. And you just hope that your loved one has a “good” day on the holiday, because if they don’t, all the planning in the world won’t save the day. I don’t know about you, but I would stress over that part weeks in advance.

So, do you feel the pull? I sure do.

Making Merry is a lot harder now.

Comments:

Nan Holmes (BigMailbox)

12-13-10

3:19 PM

Every year I am reminded that the holidays are just not that fun for lots of people. It’s downright heartbreaking when children are involved and when people are grieving. For some, you have to take a series of baby steps. If you are a regular visitor to this place and are feeling blue, you have probably earned the right. But I encourage you to look for a little bit of that holiday sparkle, if you can.

dorothy morris (dorothy_oregon)

12-13-10

5:51 AM

Laurie, even though we work hard to move forward it really is hard to find the Merry in this time of year. I go through the motions and it is easier than that first year but at times I still find tears so close to the surface and the deep sadness that sneaks in at times. It is good to read here of our friends that are working through the same. I am so happy for those who are finding it a little easier and are looking forward to enjoying the times with their loved ones. It gives hope to us that are still walking this journey. You are all very special.

Margaret M (M_Mully)

12-11-10

10:55 AM

I was diagnosed in early December 2007- and chemo was starting a few days after Christmas. My kids were upset, but I refused to put up a tree unless they were going to put everything away. No one committed so it didn’t happen. Although the house was less decorated, it felt good knowing that I had to exert less energy. The next year, I ad my 3rd surgery in early December, and was still recovering. My husband was working out of state that year, so we kept it simple- still feeling the need to do it easier. Last year, we brought back some of the old traditions. This year, my oldest will only be home for a few days, so making sure that we all celebrate together is important.

When I first read Laurie’s post on Thursday, I wanted to post about a young family who has a 7 month old fighting leukemia. I thought I would wait a bit and see what others posted first. Cancer changes everything especially at this time of the year. It’s like being a small child looking at the store window watching all the good things inside, but unable to go in the store to really participate. The cancer world is all consuming and it seems like the rest of the world is spinning along side but the two worlds don’t connect. The young family I mentioned found out that their baby had leukemia just before Thanksgiving. Since Nov 20 they have been living at the hospital, at their son’s side. He is doing better, but his second round of treatments begin just before Christmas. Cookies and presents don’t have the same priority when your loved one is ill.

Kathie Scott (KTS)

12-10-10

8:23 PM

Ned, your thoughts and mine are very much alike. I don’t want to look in the decoration boxes because everything holds a memory. I know I need to for my family but I don’t want to. Betty..so glad you are looking forward to Christmas..it will be lovely.

Ned Lemon (Ned_L)

12-10-10

8:11 PM

I don’t know where to begin. I did not put up a Christmas tree last year. Recently,I was given a very nice artificial tree. It has been sitting majestically, but without ornaments, in front of my living room window since thanksgiving. I keep telling myself I need to go out to the garage and bring in the seasonal decorations. I think I may be afraid of what’s in those boxes. Penny always enjoyed the advent wreath that we purchased together. If I don’t light it soon there won’t be much point in getting it out. I know I should count my blessings, but sometimes I just don’t want to do whatever it is I’m supposed to be doing. I suppose I feel obligated. A lot of people have placed a stake on my progressive healing-however that’s defined. I’m indebted to those who carried me and I owe it to my lost hero to carry on. She would say-“your a young man,seriously-no double plot,you have a whole other life in front of you.It’s sad to see a decades old grave monument with only one name etched in stone.” When I look at my purposely engraved name I feel like I’m standing unclothed in the presence of those who no longer know the burdens of time. I’m fagmented. She took part of me with her. So much for that-tis the season of anticipation-despite everything this old world always groans as it waits for the birth of a shiny new day. Maybe if I turn the muted television off and go outside-“Mean Lucy” and I can find a star that knowingly shines on the path meant for me.

betty obst (bettyoops)

12-10-10

3:19 PM

Yes, it is a hard time. My daughter was diagnosed in late 2006 and passed in early 2008. This is the first year since 2005 that I have done any decorating. So much has happened that we have had to deal with, that I guess I just pushed a lot of the feelings down but recently so many of these feelings are popping up. Not even whole thoughts…just a moment of deep sadness for our loss. My granddaughter had to move to Boston to find work in July 2009. She is coming for Christmas this year..the first we’ve seen her since she left. I find myself very excited…I think it’s almost as if I feel that her mother is coming!! sigh!! I can handle the jolly Christmas music, but the christmas hymns and slow songs just move me to tears, still. They are so beautiful but so sad; they touch that spark within me and the memories start flowing again.

At any rate, I’m looking forward to this Christmas with my husband (who I wasn’t sure would even make it to LAST Christmas), our son and our grandchildren plus my grandson’s lovely girlfriend. Wishing you and yours all the joys of Christmas and, perhaps, a little relief when the tears flow as we relive Christmas past and the loss of our loved ones.

Kathie Scott (KTS)

12-10-10

11:36 AM

Laurie H.,Thank you for your kind words of encouragement. I know someday I will be able to look at the old photos, bc when life was great, but not yet. I really would like to just let it all pass me by again this year.

Sasha Degaspar (Dolly)

12-10-10

6:37 AM

This is a bad time of year for all of us. I had to walk out of a store a few days ago because they were playing Christmas Carols and I couldn’t handle it. I think we are all feeling the pull Laurie……..let’s all pull together…….lifting

Laurie Hirth (LOR)

12-9-10

8:20 PM

Laurie, it is that hard time of year. I didn’t put that tree out the first month after Neil died. I took off and spent time in CA with my family for two weeks. The next Christmas, I put the little tree we both shared and at the last minute, the big one went up. I got the nerve and it was a good move. All by myself, I cried, I laughed, I looked at old photos and it all felt good. Right before Christmas, I flew to CA and met my kids who flew from KS and spent the week with all of my family. This year, I am in my own home, the dogs are enjoying the tree and “Rusty” tore up a few presents already! I made it through the “3rd year” and I am still alone, it still aches. Give it time Kathie, if it helps to take a quiet moment for “You” to have your cry, go for it. Just don’t dwell on it. Keep taking that one step forward….It’s not that it gets easier, it’s just that is gets pushed to a place where you can survive. I hope you find your peace…

Kathie Scott (KTS)

12-9-10

6:51 PM

There is no indication at my house that Christmas is near. I simply cannot get the strength to put the tree up but I must for my grandchildren to enjoy Christmas Eve. There are so many Christmas memories that tear at my heart even the ones where Jim would wait until Christmas Eve to shop. It became his tradition with our oldest daughter and we laughed about it every year. He liked everyone to think he was Bah Humbug about it all but he was the one who enjoyed watching the kids rip the paper and the family time. I want so badly to go away by myself and hibernate to get through it but can’t bring myself to leave my girls on their own. The Merry isn’t there anymore.

12-8-10

6:16 PM

Being Defined by Cancer

I thought a lot about Elizabeth Edwards today.  I watched the morning TV shows and listened to her friends remembering the strong, healthy woman who had vision and strength and loved her family more than anything in the world.  They remembered how the door to her home was always open.  No need to call ahead, just come by and say hello or be a part of pizza night at the Edwards’ house.

One of her long time friends recalled how they would talk on the phone and this friend would vent about her day and at the end of the conversation, Elizabeth would say “Wanna trade?”  The friend said she always felt so humbled.

And then a young man spoke up and said this woman was not defined by her cancer and that’s when I bristled at the thought.  Elizabeth Edwards WAS defined by her cancer in so many ways.  This is not a bad thing.  She wrote a couple of books about living with cancer.  She was a part of Stand-UP-to-Cancer.  She spoke to so many cancer survivors groups, sharing experiences.  When she joined Leroy and Ted Koppel on the Discovery Channel cancer special, she had a clear message about living with the beast.  When the town meeting ended that night, she was surrounded by audience members who wanted to share their cancer stories and she stood there and spoke to every last one of the them.  It was her own little town hall meeting, sharing and listening.  Her cancer gave her a forum to help others.  She WAS defined by her cancer in the best ways possible.

As Leroy often said, “I am not my cancer.”  The same applied to Elizabeth Edwards.  There was so much more to both of them.  But the worst of the disease brought out the best in these two warriors.

Cancer may have caused their deaths, but it never killed their message.

Comments:

dorothy morris (dorothy_oregon)

12-9-10

3:23 AM

I too have thought about Elizabeth Edwards today. I admired her for her want to help others that were also dealing with cancer. My prayers are with her family.

12-7-10

4:51 PM

Elizabeth Edwards

Forget that she’d been front page news as a political figure.

Forget that we’d seen the fine print of her personal life the past few years.

Remember, she was diagnosed with breast cancer in 2004 and decided to share her battle, in detail, with all of us.

A brave woman, a strong woman who felt through her struggles and openness, others would be less afraid when they heard the words, “you have cancer.”

Elizabeth Edwards died today.  She was 61 years old.  Breast cancer was how it began and by the time her life ended, the beast had found ways to invade the vital organs.  But this soldier of cancer didn’t succumb easily.

I remember her telling Leroy to “hold on.”  She would talk to him on the phone and encourage him to keep fighting.  She’d say “they’re so close, keep fighting.”  She really beleived some magic bullet that would knock-out cancer was just around the corner.  She wanted to think of cancer has a chronic disease, not a death sentence.

A few weeks before Leroy died, she was on the phone explaining to us how she was labeling all the drawers in her home, so her kids would know where everything was.  She wasn’t feeling well. The doctors were changing her treatment again and she was wondering what that would mean.  Would she react badly to the new drugs? Would this new therapy work?

That was two and a-half years ago.

The fight is over now.  No more pain or suffering from this demon.

Rest in peace.

Comments:

Nan Holmes (BigMailbox)

12-8-10

12:06 PM

One of my first thoughts yesterday, when I heard the news on NPR, was that there would be postings on Our Cancer. It does leave such a sad feeling and I am thinking of her family, who will miss her so much.

Brady Merrill (SAOC)

12-8-10

8:19 AM

I wish her children and family peace. Their mother handled herself with grace and dignity.

dorothy morris (dorothy_oregon

12-8-10

1:38 AM

I am very sad for the loss of Elizabeth. My heart is with her children and family. She had great dignity and grace. Rest in peace Elizabeth.

Kathie Scott (KTS)

12-8-10

12:24 AM

I only knew Leroy through his writing but I remember going to the blog on a Saturday, eventhough I knew he didn’t normally post that day, and seeing the awful words and literally gasping. When I opened the computer up this evening and saw that Elizabeth Edwards had passed away, I gasped again. Both people to be admired. Those of us whose loved ones are no longer with us are broken hearted knowing another family is hurting. RIP Elizabeth Edwards.

Maureen Doallas (Mo_D)

12-7-10

8:28 PM

I admired Elizabeth Edwards especially for her grace, her frank acknowledgment of what it means to be human, to suffer but keep going on, and her deep faith in what she called “the power of resilience and hope”. All of us are here because of resilience and hope. Edwards’ gift was make the abstract real.

Al Cato (tennisbum)

12-7-10

7:04 PM

She was a remarkable woman. Her example of how to live when those terrible words are spoken is to be emulated. Cancer took her life but did not define her. Her children had had a role model to follow if and when life’s adversities and tragedies befall them. She fought the good fight. Go in peace and suffer no more!!!

Sasha Degaspar (Dolly)

12-7-10

5:54 PM

I’m deeply saddened by the loss of this beautiful human being. I first saw her on the discovery channel special ” Living with cancer ” with Leroy and Lance Armstrong. Rest in peace Elizabeth………….

12-6-10

3:59 PM

Today and Tomorrow

Austin, Texas, a funky little town filled with artists and good music and ladies roller derby.

Yup, ladies roller derby.  I was there doing a story on these women.  Professional, career women by day and hard-smackin’, roller derby gals by night. We finished shooting early in the day and I was able to get a flight that would get me back home sooner.

I called Leroy to tell him and his speech pattern was odd.  He had a lot of long “UMMM’s” in the middle of his sentences and that wasn’t like him to talk like that. But he said he’d be at the airport at the new time and that was that.

When I jumped in the Jeep he suggested we go to dinner at a favorite Italian restaurant and that sounded like a good idea.  He also mentioned that he thought his face was drooping on one side. I didn’t notice anything until we sat down in the restaurant. He was right…his face was drooping on one side.

We ordered but the more we talked about his face, it became apparent a call to the doctor was in order.

We didn’t wait for our food.  Got back in the Jeep and headed straight for the ER.  His doctor had called ahead.  A brain scan, an ER resident who could barely look us in the eye and a brain mass and you know the rest of the story.

Today, five years ago, life was OK.  We were living in our world, doing good things, doing fun things. Life was “life.”

Tomorrow….a different story.  A different life on the horizon.

Comments:

Brady Merrill (SAOC)

12-6-10

7:52 PM

strange to think you were here, a year later, same funky fantastic town, i stepped into that different world. Laurie shortly after entering ‘crazy land’ i heard Leroy for the first time on NPR. i thought his comments will be an interesting addition to the my time in ‘crazy land’. little did i know how twisted the road would be, how crushing and how delightful the journey would become.

12-3-10

6:49 PM

An Altered World

Here’s a story that should give us all a good start on the weekend…a story of cancer on the run.

My friend Bruce is out of the hospital after undergoing his bone marrow transplant.  He’s an outpatient now, having to go in for check-ups every other day.  His numbers that reflect his red cells, white cells, whether or not the new marrow is making a home for itself in it’s new body, are multiplying by the day.  He gets stronger by the day too and it’s such good news.

He’s by no means out of the woods.  The doctors watch for any signs of graft vs host problems…where the marrow decides it doesn’t like it’s new body…and that’s very bad, but so far, Bruce is brand new and the beast is no where to be found.

There are still so many unknowns for him. I think all of his friends are quietly rejoicing at his success and at the same time, holding our collective breath that the beast isn’t regrouping somewhere deep in his bones.

That’s really what living in this altered world is all about.  Everything is fine, until it isn’t.

Comments:

betty obst (bettyoops)

12-5-10

7:33 PM

Yes, I know exactly what you mean Laurie. My husband went off the chemo at Easter because he was so run down; thankfully the scans have all been good since then but we have been holding our breath. His last scans were also good but his tumor markers have shot up. He goes for a PET scan in 2 weeks….keeping our fingers crossed. Even if the news is bad, we are so happy to have had these last 7 or 8 months, chemo free. He has regained all the weight he lost, his energy and is feeling good!! I’ll keep Bruce in my prayers!!

Sasha Degaspar (Dolly)

12-5-10

11:13 AM

So glad to hear good news. I will keep Bruce and his loved ones in my prayers………..lifting

Al Cato (tennisbum)

12-4-10

8:56 AM

Glad to read about Bruce’s good news! HOPE abounds for Bruce, his family and friends and it is such a marvelous feeling!

dorothy morris (dorothy_oregon)

12-4-10

2:59 AM

Laurie, will continue to keep Bruce in my prayers. He is so lucky to have you as a friend.

12-2-10

7:16 PM

Lookout Cancer!!

Posting late because I’ve been at Hopkins all day. I’m working on a series that will introduce to you, some of the fine doctors and scientists who are reaching right down the throat of the beast to come up with therapies and vaccines and procedures that will prolong life and in some cases actually kill this predator.

Cancer and genetics is the combo of the now and of the future.  So many discoveries about the disease are now linked to your unique gene alphabet.  One little hiccup in that line and it’s a pretty good bet, cancer is in your future.

Early detection appears to be the key to the cure for many of the cancers in our world today.  Colonoscopy, pap smears, tests like these that result in finding early cancers have many oncologists using words like “cure” in cancer world now.  That’s progress.

And I know when we hear that treatment for some  advanced cancers can extend lives from six months to two years now, doesn’t sound like much, but believe me, an extra year and a-half of life, or in our case, an extra 2 and a-half years, meant everythng. That’s a little progress too.

Do I wish the doctor’s I met today would lock themselves in their labs and stay there  until a discovery so big would force every other story off the front page? You bet.

The great thing about today was…I think they wish that too.

Comments:

Nan Holmes (BigMailbox)

12-3-10

4:56 PM

I am wondering if anyone has read “Emperor of All Maladies.” As I understand it, it is a biography of cancer.

Al Cato (tennisbum)

12-3-10

12:12 PM

I’m hoping that they are working very hard to solve this riddle wrapped in an enigma called cancer. Can’t come quickly enough ’cause many are fighting to buy more time, going from one protocol to the next in the hope that something will slow the progression or even better, invite NED for a visit. No Evidence of Cancer…what sweet words. A cousin, 84 years old, just diagnosed with brain cancer. Not sure if the brain cancer is the primary or if there is cancer elsewhere in his body. Being scanned today to determine this. Sounds really strange to say that I hope the brain cancer is the primary ’cause it can be zapped with radiation depending upon its location and type of brain cancer. Cancer elsewhere in his body would be devastating ’cause he is not strong enough to endure chemo..has heart issues as well. A young girl I know (17) just completed a bone marrow transplant received from her sister several months ago and everything was terrific. She could go back to school and be with her friends. Not feeling well, went to hospital, blood test revealed that leukemia has returned. Now she has begun another long and very painful process to undergo another bone marrow transplant from a non-relative. These two cases illustrate that cancer knows no boundaries..the young and the old are not immune. As Leroy once said and I paraphrase….”Let’s get the garage mechanics/scientists to work to find a solution if not a cure”. The hourglass is on its end and the sand is picking up speed as it exits the upper chamber into the lower one.

betty obst (bettyoops)

12-3-10

9:16 AM

Leroy was lucky to have Hopkins but Hopkins is so lucky to have had Leroy… and YOU!! I would imagine they are quite receptive to the interest, initiative and caring that you have shown them. It is an excellent hospital center. I too am hopeful about the strides that are being made today; seems as though there have been many more stories recently about new drugs, new treatments, new tests that have made the road easier for the cancer patient…and their families! Let’s pray that their dedication is rewarded even more in the future. Hope you catch up on your rest…you’re doing great work!!

12-1-10

7:56 PM

The Photo Drawer

 

Al’s message today reminds me of a sad, but a most meaningful day I spent with my mom as the cancer moved through her stomach and spread it’s death grip in stealth like precision.

We too had a photo drawer.  It had spilled over onto a shelf in a cabinet in the dining room and there were stacks of old photos of my family.

My mom and I sat down on the couch and one by one started to look at these pictures. We never intended to spend the day walking down memory lane, but one photo led to one story and then another and before we knew it  the late afternoon sunlight was streaming in the window and we had laughed and remembered some of the best family lore!!

I think of this now and wonder if it made her sad to think about those better days or if it gave her a few hours away from the worry and reality of the cancer?

Had she reflected back on her life that day? I hope so.  And I hope she saw a strong, young wife and mother who lived a long, good life.  I was so lucky to have a great mom.

I saw it in those photos that day, but I’d known it for many, many years.

Comments:

betty obst (bettyoops)

12-3-10

9:11 AM

Laurie, I feel confident in saying that was the best “medicine” you could have given your mother; love, comfort, sharing, laughter, happy memories….what could possibly be better? I remember pulling out all the old photos on the day my mother was buried; the family just poured over them, allowing them to heal some of their pain with happy remembrances.

Brady Merrill (SAOC)

12-2-10

2:24 PM

Laurie if I had to guess I would say your Mom cast back in her minds eye and marveled that her life was so rich, full and that her daughter had turned into such a fine strong woman. The time y’all spent was time the ‘beast’ had no sway over her. I am sure she enjoyed the time spent with you walking down ‘memory lane’ immensely.

November 2010

11-30-10

5:53 PM

Found Treasures

I’m not sure what’s driving me in this direction but I’ve been going through a lot of memoribilia. I’ve found some very cool things that remind me of years gone by and it’s very soothing.

Old pictures from 20 years ago. I look so young, so innocent. Life and death has yet to make a mark on my face. Leroy looks so solid. He’s got the world on a string and it’s obvious he’s in control of his every move.

I found a really old notebook from his college days. He took some time away from school and traveled Europe, like you could only do in those days. He talks about sleeping in meadows, in his sleeping bag, under the stars. He talks about drinking a 30-CENT bottle of wine!! Jumping on one train, traveling for hours and then jumping on another to meet up with friends who had taken a different journey. His words were those of a young man just starting to stretch out in the world.

He had so many adventures. They weren’t all perfect. The trains didn’t run on time and neither did his life…even back then.

But he found his way to my life and I have to be grateful for that.

This is probably the perfect time to be finding these old treasures.

Some one please tell me where all this time has gone?

Comments:

Brady Merrill (SAOC)

12-2-10

2:39 PM

Where has the time gone? It slipped past us as we were busy with our lives, making plans, going here, doing that, marked by holidays and birthdays we tried to notice or forget. I wonder at the pictures of the young men and women of almost 40 years ago, some are forever 20, and laugh thinking of them now, starting to wrinkle, sag and grey like me. Aw we were full of life, still are if asked, some battled cancer, some lost partners and children, all have battled, we all have lost and won some. All these ideas from looking at a picture, looking back in my minds eye, memories of both good and bad times, reflected back by a picture. I do love a walk down memory lane, wish I could stop and talk to some of these kids now, I would hope we could laugh and cry at at all that has pasted and is to come ( I hope). So look at the picture(s), smile with the memories, and throughly enjoy them, you have earned and paid for them in full!

Sasha Degaspar (Dolly)

12-1-10

11:56 AM

I’m not too computer savvy. I didn’t know how to post the link. You are going to have to copy and paste. I hope everyone enjoys it………….I know, it brings me comfort….lifting

Sasha Degaspar (Dolly)

12-1-10

11:48 AM

Dear Laurie/ All, I would like to share a song I heard and in my opinion says it all ! And, I think we can all relate to it and agree with it……………..http://www.youtube.com/watch?v=Y7_VcWnLTu4

Ned Lemon (Ned_L)

11-30-10

10:59 PM

pictures have a way of stopping you in your tracks-and taking your breath-

Kathie Scott (KTS)

11-30-10

8:11 PM

I know memories should be comforting but I still find them to be terribly upsetting…will this ever change? I really want to be able to sit down with our boxes of photos and live our life over. If only I could figure out where it began to change,without our knowledge,and stop it and change the path to go away from the beast.

Al Cato (tennisbum)

11-30-10

6:54 PM

And treasures they are!!! We had a tradition in our family for 40+ years, while my mother was alive, of opening an old end table in the family room at her house after Thanksgiving, Christmas, birthdays, anniversaries, deaths in the family, etc. after dinner and dragging out hundreds of old pictures and try to guess who was in the picture. My mother was one of 10 children so by the time I was married and had kids, there were so many pictures that it would take several hours to go through them. We repeated this at every occasion and never tired of doing it. Pictures of my mother and father when they were very young, all of her brothers and sisters in their younger/older years, plus me and my sister as babies, toddlers on up to and including our families. Those times we still talk about today and the memories bring smiles and laughter to us. While I realize that some sadness accompanies looking at the pictures and remembering really special times, we would not trade the warm memories that touch our hearts even today. Time passes, things change, we change, our lives change, but the memories, if we allow, will always be with us, comfort us and cause us to reflect upon those wonderful times and very special people. The pictures tell a story and it is a wonderful story if we allow them to do so.

11-29-10

4:41 PM

“Where is he now?”

Such thoughtful messages from all of you and I hope Thanksgiving was warm, tasty and gave you comfort with old and new memories of the holiday.

I know it’s not easy.  This time of year is hard on all of us.

I was in a photo store today, ordering some prints of the most amazing shot of Leroy in Kosovo.  It was his birthday, his 44th birthday and he is surrounded by children who were just liberated by NATO forces in a small village.

I just found this photo that was sent to me about ten years ago.  It had been stashed between two pieces of cardboard and I just discovered it the other day so I’m going to send it to Leroy’s sisters.  They should have this “life-like” rememberance of their brother too.

The man helping me to scan the picture was very interested in it.  I gave him a quick history of the photo.  He wanted to know more about Leroy and what he was doing in Kosovo and after a short conversation, he asked me, “Where is he now?”

It was like a bolt of lightning went through me.  I wasn’t expecting that question.

I got so sad, instantly.

And I can’t stop lookng at that picture.

Comments:

betty obst (bettyoops)

11-30-10

8:18 AM

I remember a photo like that and loved it; you can really see “Leroy” in there, among the children…doing his thing!! I know how that question must have floored you. I remember the first time after my daughter died when someone asked me “How many children do you have?” I was completely floored and didn’t know how to answer. Then I was concerned with making them feel bad about asking it. Very awkward and very painful!! Hopefully this will get better as time goes on. sending virtual hugs!!

Sasha Degaspar (Dolly)

11-30-10

7:10 AM

Dear Laurie, I have seen that photo of Leroy. I don’t know whether I saw it when watching the special with Ted Koppel on the discovery channel or here on the blog. But, I do indeed remember that picture. I agree with Kathie, I still see myself as married and it feels so odd to check off that little box that says “widow” Unfortunately, all we have left is pictures and good memories. Let’s hope this can sustain us……..lifting

Kathie Scott (KTS)

11-29-10

6:24 PM

Laurie, I don’t know if that’s the photo I have seen somewhere or not but if it is, I remember it as a beautiful photo that showed a man who looked incredibly happy to be in the midst of those children. It’s the first time you hear questions like that that are so difficult. I didn’t want to check the “widow” block on a form recently because I still see myself as married. You must have been so proud to be able to tell the story behind that photo. I think, unknowingly, we are careful to answer the question about our status before someone can ask or even avoid a situation that might reveal we are alone. Let that picture comfort you.

11-24-10

3:02 PM

Thanks and Thanksgiving

Well, here we are, Thanksgiving Eve….

The holidays are upon us once more.  Thanksgiving, a favorite holiday for me since I was old enough to scoot-up to the table and enjoy the turkey and all the wonderful flavors that make up the big meal.

It was always a big family event when I was a kid.  It was that way for Leroy too.  So it seemed so natural for us to continue it as a couple.  We would gather good friends around our table, everyone would bring a dish from their childhood Thanksgivings and it was a special night.

Thanksgiving 2007 was the last time our home was filled with those kind of memories. Truthfully, I could barely face this holiday the last couple of years.  It was just too hard. This year, I’m the “appetizer chef” for a group of 15 at a friends’ house.  I’ve got to push myself out the door and start to share in the holidays…I just have to do it.

I know some of you are feeling the exact same way, so let’s do it together.  For those of you who are care-giving a loved-one with cancer and probably not in the mood either, don’t waste time feeling bad.  Embrace your loved one and hold them near.  Make a memory tomorrow night.  Don’t let cancer rule over Thanksgiving.  Don’t let that happen.

Enjoy your holiday. When I think of everything I have to be thankful for, I’ll think of all of the Thanksgivings with the Big Guy sitting in his chair at the table and I’ll think of all of you, who have given me so much.

Happy Thanksgiving.

Comments:

betty obst (bettyoops)

11-27-10

8:15 AM

Beautiful sentiments from everyone. Especially enjoyed your post Ned. Sometimes it takes looking “outside” of ourselves to what other people are experiencing, to truly be thankful for what we have. We had a very nice thanksgiving, thanks to the kind invite from neighbors and friends. Due to my recent surgery, I only had to supply paper products and they wouldn’t even let me help with clean up. I DID feel guilty but you know, it was one more thing to be grateful for (good friends), and I have to admit, it sure did feel good after all those years of “after thanksgiving dinner cleanups”, not to have to do anything. I must say I really didn’t have the energy to do much any way. Hope you all enjoyed your Thanksgiving holidays, whether it was with family and friends or alone…turkey or other …. may loving memories and gratitude have filled your day!!

Nan Holmes (BigMailbox)

11-25-10

1:23 PM

Happy Thanksgiving everyone! I am very grateful for many things, including this group. It has been a year of loss for some of us, but may we be especially grateful for good memories and honor the memory of those we have loved so much.

Sasha Degaspar (Dolly)

11-25-10

7:56 AM

Happy Thanksgiving to all……….let us continue to lift one another

Ned Lemon (Ned_L)

11-25-10

2:12 AM

I worked a lot of extra hours this week and it seemed like everyone I came in contact with had something to complain about. On top of that,I haven’t been resting well. The other night I had a very anxious dream-I could not get Penny to realize that we had to go turkey shopping. A little dark house can be very quiet after a dream like that. Tonight it’s cold and wet outside and I didn’t want to be bothered with anyone or anything. I did store up enough energy to check my e-mail. I was shocked out of my malaise by a long distance photograph of my grinning nephew playing lot soccer with some young boys at Bagram Airfield. Those Afghani children and our soldiers were having a great Thanksgiving holiday. The children were dressed in little more than rags and I noted that they were about the same age as my nephew’s twins,twins who won’t be watching football with their dad tomorrow. I was able to “chat” with Captain P. for quite some time. He is very committed to the task at hand and he has a lot of admiration for everyone in his new surroundings. He lives in a world where nothing can be taken for granted. He is HOPEFUL and he has embraced PEACE within his heart. I’m going to try to rest in my nephew’s dream. The truth is in the sharing and for an inextinguishable love I will remain eternally grateful. May God bless all of us,regardless of whatever war were fighting.

dorothy morris (dorothy_oregon)

11-25-10

2:03 AM

Wishing all a very Happy Thanksgiving.

Maureen Doallas (Mo_D)

11-24-10

9:12 PM

Joining all here, especially you, Laurie, in offering deep thanks for the love we all have experienced together, shared, and hold yet in our hearts. I’ve come to believe there is something in each day worth celebrating. I celebrate finding my way because of this group. Happy Thanksgiving!

Al Cato (tennisbum)

11-24-10

6:26 PM

Happy Thanksgiving to all. In spite of all of our trials, losses and uncertainties, I am certain that I have been blessed. All of the woudas, couldas and shoudas cannot replace the lives we are living and I am grateful. Memories do cause pain and suffering but they also allow us to remember the joy, happiness and thankfulness that we have enjoyed. As we sit down tomorrow for our Thanksgiving meal, may we all take a brief moment to say Thanks for the many gifts we’ve been given. As Ned has said…”Have faith in faith”. I believe this with all of my heart. Trust and believe as we give our Thanks..

11-23-10

5:28 PM

Don’t Forget

How do we keep a person’s memory alive?

There’s no guidline to follow that’s for sure.  We do it in our own way. The way we feel most comfortable.

After Leroy’s death all I wanted to do was think about him.  Keep his face in my minds’ eye, keep his voice in my head, remember him when I was awake and when I slept. I suppose that was the first phase of the grieving process.  I couldn’t let go.  And I didn’t want anyone else to forget him either.  That would have buried him and all the things he had done in his life.

His time here was important and he had accomplished so much.  His gift of the “My Cancer” blog was enormous.  He brought this community together and gave it a voice, a purpose, a meaning.  Cancer needed a warrior to knock it down to size and Leroy had the size and punch to do just that.

As the days and months pass, I still think it’s important to remember him.  His memory in my life, will never fade, but his memory in the life of others has probably been pushed back behind many happy occasions and probably some sad ones too….but I’m hopeful that every once in a while, his friends, this community, will remember one little nugget of something Leroy did for them in years gone by and they will stop short for just a second and smile or nod and think of him.

It’s a memory of a man worth remembering.

Comments:

dorothy morris (dorothy_oregon)

11-24-10

1:54 PM

Laurie, I will never forget Leroy or you. Leroy helped guide us through some very tough times. He was such a strong person and so open with his feelings. You also have walked some very rough roads with us. Thanks to both of you Laurie.

Irene P (Irene)

11-24-10

12:22 PM

You probably have heard the phrase like ‘You can’t take it with you’. The way most of our time is spent I believe that is true. Leroy was generous to others, people hurting from cancer like Leroy was. He made an isolating experience a shared one, I think that changes how you are measured and I think it goes with you. I am thankful for what he (and you) did and do.

Sasha Degaspar (Dolly)

11-24-10

8:41 AM

I will never forget Leroy. He touched my life in a way no one could. He walked with me every step of the way through my husbands illness. As I have said many times in the past, Leroy’s Blog was my safe place. I don’t know how I would have gotten through those hard times without ” My Cancer ” Now dear Laurie, we have you………….I want to wish everyone a very happy Thanksgiving. Despite our loss, we still have a lot to be thankful for…………lifting

Al Cato (tennisbum)

11-24-10

7:34 AM

There are people we encounter as we make our way in life that leave an indelible mark on our life. Leroy is one that I’ll always remember. I remember his courage, his humor, his insight and wisdom, his blogs….his words painted vivid pictures that I could see in my mind’s eye, his empathy and sympathy for others…..and I could continue. I have a majestic oak tree at the corner of my yard and every time I focus on it, I think of Leroy. It is firmly anchored there and has been for many years long before I moved here. Leroy anchored his blog and we knew it would be there to offer insight to us. Now that Leroy can no longer speak, Laurie has taken the anchor chair. Through her writings and thoughts, we hear the echos of Leroy’s voice. Laurie dispenses empathy, sympathy, wisdom, encouragement, courage, and HOPE . The big guy looks down and smiles. What a legacy. Leroy nor you, Laurie, will ever be forgotten. We are indebted to you both.

Dianne West (Dianne_in_Nevada)

11-24-10

1:13 AM

Leroy’s time here will never be forgotten; his legacy is My Cancer and all of the people he touched. And yours, Laurie, is My Cancer, which continues to sustain us. Forget? Not a chance.

Brady Merrill (SAOC)

11-23-10

7:59 PM

I doubt any of us that were lucky enough to read or hear Leroy’s comments on his journey will ever forget him. I can say I shall not forget him, nor would I forget your contributions and accomplishments after his death. I would say both of you are worthy of being remembered.

11-22-10

4:45 PM

Saturday

Did you feel it? On Saturday, did you all feel the rush? I hope so because on Saturday you were all with ME in Baltimore as I stood infront of over a thousand women and told them about “our” journey.

I had been asked by the folks up at Hopkins who hold an event called “A Woman’s Journey” to tell my story.  Reallly our story…me and Leroy…a journey of almost 25 years.

I’d been working on the telling of the story for many weeks.  You think you know it, until it’s time to put in down on paper and it’s not so easy squeezing almost 25 years into 40 minutes.

But when it came time to talk about the cancer and the blog, it got very hard.  But that’s where all of you came in.  I felt your strength, your lifting and I got it done.

When those women in the ballroom stood to applaud, they weren’t just clapping for me.

They were saying thank you to Leroy and to you too.  They were honoring all the days we’ve been together on this blog, sharing and building a strong friendship that, on Saturday, turned into a story about love, hope and lifting.

Today, I want to say thank you to all of you.

Comments:

Maureen Doallas (Mo_D)

11-24-10

9:13 PM

We travel with you.

dorothy morris (dorothy_oregon)

11-24-10

1:57 PM

Well done Laurie..Thank You.

Brady Merrill (SAOC)

11-23-10

7:49 PM

Laurie, in my journey through crazy land your’s and Leroy’s blog have carried me many times over the ruff and tumble bumps, to you and to him, I can never thank y’all enough.

betty obst (bettyoops)

11-23-10

1:01 PM

Laurie….I am constantly inspired by the fact that not only did you return to the place of Leroy’s treatment (which apparently so many of us have difficulty doing) but you embraced it and the people there and used your experiences and ours to make the journey easier for others. I commend you. You’ve made us and Leroy Proud!!

Sasha Degaspar (Dolly)

11-23-10

7:21 AM

I think we all would have loved to be with you in Baltimore on Saturday and I’m sure you were a true inspiration to all who where there. Fortunately, we have you hear every day and for that I am thankful. Thank you again, for sharing your stories and keeping this blog alive………..lifting

Dianne West (Dianne_in_Nevada)

11-23-10

12:44 AM

Wonderful! I can’t say it any better than Kathie and Al … ditto times 2!!!

Kathie Scott (KTS)

11-22-10

9:11 PM

Thank you for including us in your journey. You all lived so much in your years together but it came down to something very simple…you loved each other and cancer took over your life but you didn’t let it destroy that love. I would have loved to hear you speak and tell your story. Thank you for keeping us together.

Al Cato (tennisbum)

11-22-10

6:31 PM

It is so special that you were the one! Leroy created a masterpiece , truly something that won’t be replicated again. Laurie, you lived the life as Leroy was describing it for all of us and you have picked up the story and continued it for all of us. It is not completed yet because you continue to persevere. We are all attached to one another emotionally and this is good. We are blessed to have “known” Leroy through his blog. He was our friend and we miss him. But thankfully, you’ve chosen to honor him and his memory by continuing the noble work he began. For this we are forever indebted to you. Always know that you occupy a special place in our hearts and will forever. Blessings as always. I hope that Hopkins knows what a treasure you are.

11-18-10

4:18 PM

The Beast Doesn’t Win Today

Cancer took one on the chin today.  If that’s not a great headline, what is?

Many months ago I’d gotten a call from a friend.  Her friend had gotten very bad news.  Pancreatic cancer had invaded her body and the prognosis was not good.  Could I help by suggesting anyone up at Johns Hopkins who might have a more aggressive approach to treatment? I came up with a couple of names and away she went up to Baltimore.

Today, the email brought the best news.  The treatment is working.  The cancer is shrinking.  This woman is not only living, but thriving and is back at work and living life.

As my friend said to me today…”she’ll take it for as long as it lasts.”

That’s the way you live in cancer world.  You take the good news and you run with it.

Words like “shrinking” or “remission” mean better days ahead.  At least for a while. And who knows how long “a while” might be?

Cancer, you didn’t win today.

Comments:

Sasha Degaspar (Dolly)

11-20-10

1:11 PM

I’m happy that your friend received good news. The words shrinking and remission are nice, but I’m hoping for an even better word…..CURE………lifting

Al Cato (tennisbum)

11-18-10

6:36 PM

Small victories are huge for the cancer patient and caregivers, friends and family. It is impossible to measure how much “shrinking or no new growth ” means. It causes HOPE to blossom out all over and that is a good thing for this day and this moment. One of my friend’s wife is diagnosed with leukemia (CLL, I think, and no treatment required at this time). I told him to remember vividly how he felt when the doctor said to them “It is leukemia”. Let those feelings (despair, rage, sadness, loss, etc) become embedded into your being as a point of reference. His wife just had scans and everything is OK ; no organ involvement. I told him to also remember the words uttered by the oncologist “everything is OK, no spread”. The feelings of joy cannot be contained. I also reminded him that we in the cancer world live between the two extremes. He and his wife and family are new to our world so their feelings are so new to them and what it all means. They’ll be fine. They have great faith. Ah yes, small victories; battles won….we all can relate. Sadly, the numbers are still so small but we must latch onto HOPE when it occurs and Always Believe in Miracles!!! Yes, they do occur even in the cancer world. I have witnessed one. It is a start……

11-17-10

5:05 PM

Missing Harry Potter

So the new Harry Potter movie is ready to rock the world. OH, how I wish Leroy was here to see it.

I remember how he made his own little version of a bucket list and reading the last installment of the Harry Potter series was on it.  He really wanted to stay alive long enough to see what happened to Harry and his pals.  Thankfully he got his wish.

We would have been in the first wave to see this one, I can bet you that.  We were big move goers anyway.  I remember when the last of the “Lord of the Rings” films came out.  He was so jealous that I got to go to a premier in New York.  I called to tell him how terrific it was and he tried so had to be excited for me, but I could tell he really wanted to be there too.  As soon as I came home from New York, we went to see the film and then we saw it again and again. It’s on the shelf here at home too.  The full set of “Lord of the Rings.” Three of our favorite films.

I sometimes sit here and think about all the things Leroy has missed in the 27 months he’s been gone.  How I probably would have done things differently with his guidance and just how different my world would be today, if he was still a living, breathing part of it.

I think I’ve adjusted or should I say, readjusted to my new world.  I’ve been pleasantly surprised by some things and disappointed in others. I’ve learned to go it alone.  I think that’s probably one of the hardest parts.  Twenty-seven months sounds like a long time but it’s not.

And I still wish he was here to see the newest and final Harry Potter film.

Comments:

Betsy Halpern (Betsy_in_Oregon)

11-19-10

2:18 AM

My Andy also hoped he would make it to the last Harry Potter book—and he did. It came out very close to his birthday and our daughter was so pleased to be able to give it to him. I have been keeping up with the blog—thank you so much, Laurie—but haven’t been posting to it. It has been almost 3 years for me, and although I think I am adjusting, I agree that there are still many lonely moments. In September I spent two weeks boating on the Colorado River—a spiritual and revitalizing experience. I think I need to find more experiences like that to add meaning to my life. On another note, I heard a review on NPR about a book The Emperor of All Maladies which is a history of cancer. I think it would be a good book to read although I am not sure I am ready for it yet. Best wishes to all—I think of you often.

Dee Bee (wyobear)

11-18-10

11:20 AM

Laurie- I haven’t been to the blog but once since Leroy passed. I often wonder about you and how you are doing. So I thought I’d come back and check in. I know how hard the months must have been and I imagine myself in your shoes. I just can’t imagine. I’m afraid I would fall and never get up. I still pray for you. And pray you will find another great partner. Those diamonds are hard to find. Thanks for still posting. I was afraid I wouldn’t find you here. I will watch Harry Potter and think of Leroy. God bless!

Laurie Hirth (LOR)

11-18-10

8:57 AM

Sasha/Laurie… there is a big difference. There is always that void now. It will never be filled, but we learn to do other things and feel other feelings to combat that void. It’s all part of the “adjusting”. Some days it sucks too! A few more weeks and it will be three years since Neil left us….and my heart still misses that big guy. I can’t wonder anymore how my life would be different. I am thankful I am in a place where I can survive, surrounded by my family and my new found friends. I have Neil in my heart where ever I go and we can’t wait to see the next Harry Potter Movie! Just be proud of each step you take to move forward….

Sasha Degaspar (Dolly)

11-18-10

6:08 AM

I think we have all adjusted, or like you put it, readjusted to our new world. It’s not easy learning to go it alone, but somehow, we manage to do it. I now know the difference between the words “alone” and “lonely”…….big difference…….lifting

11-16-10

5:22 PM

“Survivor”

I had a birthday yesterday.

In this house, birthdays were celebrated with a lot of fanfare.  Leroy and I had birthday weeks.  Yup, birthday weeks, where we had the power to pick special treats all week long and then of course on our birthday, we would have cake and presents and go out to dinner.  We both came from childhoods that celebrated birthdays in a big way, so I guess we just decided to continue the tradition.  It was fun.

Truth be told, it’s not as fun any more.  I don’t have my best pal to share my week with  and the big day doesn’t have the pizazz it once had.

I’m lucky to have family and friends who remember my special day.  They probably don’t know it, but they help me get through some of the hours in the day when I reminisce about happier birthdays.

And it takes really old friends, who know the history of Laurie and Leroy to stumble upon a special gift that bridges the good times and the sad ones.

It came in a small box, lined in cotton to prevent scratching.  A small gold bracelet with a silver oblong piece on top, with the words “survivor” inscribed.

“Survivor”

I guess I am.  I hope I am.

Comments:

Maureen Doallas (Mo_D)

11-21-10

11:16 AM

Happy Birthday, belated though it is. We share the same month. I think of you every day, Laurie, and give thanks for this place you keep for us.

Dianne West (Dianne_in_Nevada)

11-19-10

1:25 AM

My belated birthday wishes to you, Laurie. And what a wonderful gift.

Laurie Hirth (LOR)

11-18-10

9:02 AM

Happy Belated Birthday Girlfriend!!! Survivor, so awesome of a gift. My daughter, now 25, had the Chinese characters inscribed on her finger that represent survivor at the age of 18. At that precious age she had survived what she thought was insurmountable challenges…Wear that bracelet proudly, I know she does and I know I would! You earned it Laurie…

Sasha Degaspar (Dolly)

11-18-10

6:00 AM

Happy belated birthday dear Laurie…………lifting

Nan Holmes (BigMailbox)

11-17-10

5:43 PM

Laurie: Belated Happy Birthday, cha, cha, cha. To everyone out there, NPR’s “Fresh Air” aired a program today about cancer and while I haven’t heard it yet, you can to go the web site after today and listen at your convenience. The promos for the show sounded very interesting.

Brady Merrill (SAOC)

11-17-10

8:18 AM

Laurie you are most certainly s survivor, never doubt that. The bracelet is a wonderful gift, wear it and remember all the trials, tribulations and of the all the fantastic times you shared.

dorothy morris (dorothy_oregon)

11-16-10

6:42 PM

Very precious Laurie. A belated Happy Birthday to you. You truly are a survivor.

Kathie Scott (KTS)

11-16-10

6:41 PM

What a beautiful gift…that’s how your friends see you and that is what you are. You are a survivor of the cancer caregiver war. Happy belated birthday Laurie. It may not be the same as bc but birthdays are really cause for celebration.

11-12-10

5:36 PM

You be the Judge

How much knowledge is too much knowledge in cancer world?

Is it important to know everything about your cancer? What side effects might happen with your treatment?  Not everyone gets the same yucky rashes, hair loss or nausea.  So do you think the doctor or nurse should tell you every little detail that is possible with your treatment?  Or should they wait to see what comes your way?  You might get a pass on the nausea.  Not all chemo means hair loss.

This is a tough one because each patient and caregiver has a different opinion.  There are some patients who want to know every little detail.  From fever spikes and what they might mean to loss of appetite and how that might mix with the cancer drugs.

A friend of mine recently attended a group meeting of cancer patients and they discussed their feelings about knowing too much.  A couple of patients said they wanted to know everything.  That way they would be prepared for what could be coming around the corner.  A couple of others said, just tell them what is obvious and leave the guess work on the lab table.  One patient wanted to know absolutely nothing about the treatment.  “Just do it.” Not what Nike had in mind when they thought up their corporate slogan.

I always thought you couldn’t know enough about cancer.  But then I’m the one to bring in the car and stand there and ask questions about what wire goes where.

Is it a girl thing versus a boy thing?

Or a caregiver thiing versus a patient thing?

You be the judge.

Comments:

Nan Holmes (BigMailbox)

11-16-10

3:14 PM

Based on my experience, if you leave your care entirely to your doctor, you may be disappointed. My sister-in-law, who died of ocular melanoma, thought she was recovering, when her doctor at MD Anderson knew that she would not survive the cancer. But they never had that conversation during the nine months she spent in Houston, undergoing a very harsh treatment away from her family and friends. When my husband became ill with colorectal cancer, I was determined that we would work with his physicians every step of the way, no matter if we were headed for a poor prognosis. I’ll never forget my husband saying, “I want to sleep in my own bed at night.” So everyone honored that request whenever possible.

Al Cato (tennisbum)

11-14-10

4:56 PM

Just another point about patient advocacy…I spoke with a woman here in Atlanta who was diagnosed with cancer of the islets of Langerhans (islets are a part of the pancreas but she doesn’t have pancreatic cancer). This is a very rare type of cancer. She assumed that her oncologist would know what to do or would consult with some other oncologist about how to proceed. Time passed…the tumor grew….nothing from her oncologist. So she contacted a surgeon. The surgeon ordered scans. When the surgeon called with the results that confirmed the tumor and its size, he told her that she couldn’t wait but must be in surgery the next day. The tumor was removed. After much time, she was still not being given any treatment by her oncologist. She went to see her surgeon and he said for her to sit in his office until he could speak with a “human” at MDA. He had located one of the very few oncologist in the world who knew how to treat her cancer. He got her an appointment but it was 3 months out. She has now been treated by the doctor; some improvement for awhile but now it has spread. My point about advocacy is that had she had someone who could have done some research on her behalf, she could have been treated earlier. She had been without any treatment for well over a year because her oncologist essentially ignored her and only her surgeon got involved. She fired her oncologist but it is perhaps too late. She and her husband didn’t know where to turn or how to be an advocate (they are my age …67 and were very trusting of her oncologist and just assumed that treatment would be forthcoming) so they trusted the medical establishment person who should have done the research and found a doctor who could help her. Her husband has since died of lung cancer….found too late and after it had spread throughout his organs. When you rely solely on doctors and believe that they are infallible, you encounter a situation like hers that reinforces for me the need for patient advocacy. I believe that this isn’t at all unusual in the medical world especially when older folks are involved, their cancer is unusual or has spread or both. The recommendation is….well, you about getting your affairs in order. PS…I met a friend at church today who has been fighting gall bladder cancer that has spread to many organs. She has been in the fight for quite some time at MDA. Protocol after protocol has worked somewhat but the tumor always came back or there were new ones. She struggled on. She was out on a new protocol about 6 months ago. At each visit her tumor markers are going down, she has energy, looks good (she had lost 75 lbs and is about 5’2″). There is a sparkle in her eyes and her husband cannot stop talking about her improvement. All because her doctors at MDA would not quit and she wouldn’t either. A drug now seems to be working. She has real HOPE. They made a great decision to go to MDA to start with and found a doctor who will “grab the oar and row your boat with you until you decide otherwise”. I could go on but I’ll stop for now. Cancer is tough enough to fight when you are surrounded by doctors, family, and friends who are there every day lifting, supporting , encouraging, praying and researching. It is almost impossible to go it alone but many are in that situation like the lady I described above whose doctor ignored or abandoned her.

Ned Lemon (Ned_L)

11-13-10

8:49 PM

I like how Al capitalizes the word-Hope. I wish I had known Al when Penny was sick.

Dianne West (Dianne_in_Nevada)

11-13-10

2:45 PM

My husband didn’t want to know any of the ‘facts’ about his cancer, but that was because he knew I was constantly searching and asking questions. I agree with Al that every cancer patient must have an advocate. There were far too many times during our 4+ year battle that mistakes would have been made if I hadn’t been so involved. However, knowing ‘everything’ about multiple myeloma didn’t help at all to make it any easier when the end arrived.

Sasha Degaspar (Dolly)

11-13-10

6:32 AM

I think it’s very important to know everything about the type of cancer one has, including the prognosis, form of treatment and possible side effects. However, after hearing the oncologists words and doing my own research on stage IV esophageal cancer, I believed in the saying ” Ignorance is bliss “……..Maybe it’s better not to know too much…………lifting

Al Cato (tennisbum)

11-12-10

7:00 PM

I’m a believer that the patient or caregiver must be an advocate. Education and information are essential in the fight. Being totally reliant upon your doctor is a recipe that many times doesn’t work out well. Not every oncologist is “on top of” the latest trials, latest drugs, latest treatments” so when the old “standard treatment” doesn’t work, the patient is often told to go home and get their affairs in order. Not good but I’ve known patients who have been told this and soon afterwards, they passed away. Did they die because the cancer just overwhelmed their body’s defenses or did the “proclamation” from their doctor excise any Hope they had? Of course the doctors will say that they were being compassionate because the cancer would eventually cause their death. While this may be true, it also may not be true. Have you ever had a friend who exhausted all of the standard drugs and yet their cancer continued unabated? I have. But they elected to continue to fight. The next drug selected caused some of the tumors to disappear and some to shrink but their was no new growth. And this continued for months and months. It was not a durable response so some tumors have reappeared. Another new drug has been tried with some slight improvement. Now I ask you, what are these many months worth to the patient as well as their family and friends…..I say that it cannot be measured. But suppose this same patient accepted the doctor’s recommendation to get their affairs in order? You answer the question. The doctors are well intentioned (well most of them) but that don’t know when I’m going to die. Only God knows that . But they often help facilitate the elimination of Hope from a cancer patient’s life by rendering such a verdict. This is one of the reasons a patient and/or caregiver needs to be well educated and informed about the type of cancer and its treatments. Knowledge is really powerful in the cancer fight. IMHO

11-10-10

1:29 PM

Rescue

Maybe we’re all looking to be rescued.

Not by another person. I’m not suggesting that there is someone out there to replace our lost loved ones. NO way.

The rescue I’m talking about is different and I’m not even sure how to describe it. There are days when I want to be rescued from all the remembering. It’s such a heavy load to carry around.

When the seasons bring on the Holidays and the world out there puts on its happy face, the load gets even heavier. My neighbor invited me to join her family for Thanksgiving this year. A most generous offer and one that I appreciated beyond words. But I declined because Thanksgiving was always such a huge holiday for us, here, in this house and I can’t quite see myself anywhere else…at least not yet.

I’ve come a long way since August 15, 2008. I’ve made room for new memories. And that’s part of what this “rescue” is all about, right?

One step at a time, Laur…one step at a time.

Comments:

Brady Merrill (SAOC)

11-12-10

12:59 PM

Laurie and Sasha ‘one step at a time’, remember the holidays are loaded with expectations and memories. I hope you can find the warm and loving memories of your partners and keep those close to you during the holidays.

Sasha Degaspar (Dolly)

11-10-10

4:36 PM

I have often said that memories are wonderful. However, there are times when I rather not think, because it becomes too painful not have what was once there. One step at a time………baby steps……

11-9-10

5:07 PM

The Seasons of Life

Reading all your comments from yesterday’s blog, I must admit, I really didn’t think I was slipping into the “Holiday funk” that comes with remembering Thanksgiving, Christmas, Hanukkah and New Years celebrations. I thought it was too early for that. But you all may be right. Can you imagine what it will be like in a couple of weeks?

I’ve heard so many experts say the seasons of our lives shift so drastically when life hits us hard. If we experience a life course shift like a cancer death of a loved one, sometimes we never get back to where we were before that death occurred. It’s like a time warp.

I know this sounds like Star Trek talk, but there could be something to this.

I’m NOT the person I was before Leroy died. I changed the day they found his cancer and I can’t imagine how anyone could go back to being who they were BC. (Before Cancer)

Sasha is right. It takes months before you’re able to think about your loved one as the healthy, happy, robust person they were before cancer world.

I call it PTCS..Post Traumatic Cancer Syndrome. It may not be a term recognized by the medical profession, but I promise you, it’s real.

So what ever season this is, I’m glad all of you are around me and ready for some heavy “lifting.”

Comments:

Nan Holmes (BigMailbox)

11-10-10

10:35 AM

Yesterday, my daughter said to my husband, “you have been a cancer survivor for eight years.” His reply, “I try not to think about all that.” But try as he may, he does think about it and his life before cancer. And I really do give thanks that we have had these years together, even though they represent drastic change for both of us. When I read these posts, I know that our story could have been much different and I am grateful for the sharing because it gives me some understanding of what it is like right now for my fellow travelers.

Ned Lemon (Ned_L)

11-10-10

8:58 AM

Patient or caregiver-it’s always the season to make the effort. On a recent night I was in a grocery store that I hadn’t been in since my wife was healthy,happy and robust.We went there to purchase staples for her annual holiday baking. Something she bought was sub-standard and she ended up tossing her carefully prepared cakes and cookies in the garbage. She was disappointed but she was able to laugh it off and (after re-stocking) she made the effort again. That recollection came to me somewhere between “Meat” and “Dairy” and I just wanted to get out of there and go home to the safety of my easy chair. My sister, who lost her husband a few years before Penny died, once told me that a flood of holiday shopping memories cut short her seasonal trip to a big warehouse store. -It’s just not going to be the same. We try, but somewhere deep we don’t want it to be. It’s not fatalism or wallowing in being the “victim”. The starkness of it all just froze time and the world wants to start the clock again but we don’t know if we’re ready. We want to bag up all the memories and find a safe place. There should be some sense in the senseless. Where is the recipe to balance the effort? How do you know how many tears go in the mix to temper the emotion. How can there be no rest when you can’t get out of bed? You have to know-life goes on not only “out there”, but also “inside”. The pain will be sifted, over and over, and what remains is and was “- A life worth living”.

Sasha Degaspar (Dolly)

11-10-10

6:53 AM

One….two….three…..LIFT

Kathie Scott (KTS)

11-9-10

9:40 PM

We will all stand in support of each other at this most difficult time.

11-8-10

3:07 PM

A Walk Down Memory Lane

I have no explanation for it, but I know there’s got to be a reason why some days are more sentimental than others.  Maybe it’s the season, I don’t really know. What I do know is that these day, I can’t make a move without remembering something from my life with Leroy.

On my walks, the leaves are falling, the sky is so clear and blue and I picture us, back on the canal talking, laughing, planning dinner, deciding what movie to go see…I mean these are not life-shattering moments I’m talking about.  These were just good days when we shared our lives.

And as I put away the summer T-shirts and pull out the long sleeved fleeces for the cooler days ahead, I remember so many evenings with the fireplace roaring, a little wine in our glasses and a few friends visiting.  Nothing out of the ordinary, in fact, I’m sure many of our neighbors were doing the same thing.

I guess that’s where the sentimental part creeps in…I presume the  folks up the street or around the corner are still doing this.  They probably take it for granted that get-togethers are a normal part of life.  Impromtu gatherings make for happy times. It would never occur to them that something like cancer would interrupt something so routine.

I like remembering our time together.  It fills in some of the blank spaces in my life and it reminds me that cancer occupied just a small part of those many years together.  I need to remind myself of that every once-in-awhile.

But why is it so intense these days?

Comments:

Kathie Scott (KTS)

11-9-10

9:17 AM

Some days are more difficult, some parts of some days are more difficult. Like you, Laurie, I can’t always explain it but I don’t fight it I just let the memories take me wherever they will. My office is directly across from the funeral home where Jim’s service was held and the cemetary is only about 3 blocks away so each day I have that jolt as I go to work and pass the funeral home. Tomorrow will be one year since he passed away and I don’t know what to expect. I have elected to work just so I will be around other people…people who probably won’t remember what day it is. I don’t know how our daughters will be because they are still struggling. Sasha, I am right there with you about the holidays. I will go through the motions but so much of the joy will be gone. Dianne, I was in your place last year and it will be very difficult but you will make it through. Most probably with a lot of tears and a heavy heart.

Sasha Degaspar (Dolly)

11-9-10

7:13 AM

This is a very rough time of year for me and I guess for all of us with the holiday season coming. Last year, I was not able to go into a store! Every store I went to was playing Christmas music and it literally tore me apart. I had to make a quick exit, leaving everything in the shopping cart. I’m not even sure if I can handle it this year. I can see many intense day ahead of me. Dianne………it has only been six weeks since you have lost your dear Vern. I would like to share something with you. John has been gone for fifteen months now. Your loss is still very raw. When John first died, every time I would think of him I would picture the “sick” John. However, with the passing of time, when I close my eyes now, I see my beautiful healthy husband. The picture you have in your mind right now will go away. This was one of my major issues after John died…….am I always going to remember him like this? It does get easier Dianne………lifting

Dianne West (Dianne_in_Nevada)

11-9-10

1:14 AM

It’s only been 6 weeks for me, but I’m looking forward to the time when my memories of the 37 wonderful years we had before cancer entered our lives will overtake the currently more vivid memories of the final 4 years, when cancer and caregiving overtook our lives. I miss him, miss having him here to talk to, to share my day with, to call on the phone when I’m at work – and yet when I think of him I can only see how he suffered and I can’t possibly be so selfish as to wish him still here in that condition. This is hard.

Brady Merrill (SAOC)

11-8-10

6:22 PM

Laurie it is what makes us human, these memories, some sweet, some ugly and so many bittersweet and all subject to some secret whim as to when they surface. Your daily life is surrounded by memory keys to Leroy. It is coming on the holiday season, the end of the year all holding memories of your time with Leroy. I suspect all caregivers having faced what you have are beginning to have the stirring of the bittersweet memories now. I certainly have no idea how to keep the memories from flowing, ugly, sweet or bittersweet, I’ll take them and try to honor them, then hope to let them go, it’s all I can do.

11-5-10

6:29 PM

Helping the Cancer Caregivers

 

Is it just me or does cancer seem to be getting more attention these daya than in the past?

The spiral CT story…the breakthrough that will help identify lung cancers made front page news yesterday and this morning. Another in a long line of cancer stories that have been headline grabbers in the last few months.

I’m from the school where cancer experts, researchers, anyone on the hunt for the beast is a welcomed voice on our planet.  We can’t do enough to make a dent in this disease and in the pain and suffering it causes all of us.

I’m trying to push the envelope in the direction of caregivers and family members and their roll in cancer.  I’m just one little voice, but I’ll do what I can to help with some guidelines and hints on how to be a better front line advocate for the cancer patient.

When you become a cancer caregiver, there really isn’t anyone there to take your hand.  It’s a learn-as-you-go dance and it’s not easy. So many of us in this community can add chapters to these guidelines.  It’s the least we can do to help the next person in line.

Suggestions are welcomed.  Experience in this world, is a necessity, I’m afraid.  But if we’ve got it, we might as well share it.

Have a good weekend.

Comments:

Al Cato (tennisbum)

11-7-10

4:59 PM

Cancer is omnipresent in the national news, local news, church bulletins. Great to read about the spiral CT scan..perhaps a very small victory…..a very big victory for the one whose cancer was diagnosed early. I met via email a lady in our church who was just diagnosed with lung cancer. She knew really nothing except that she has had lots of tests but no clear diagnosis….type or stage, etc. I gave her the best information I could based upon my experiences and asked her to let me know what her tests revealed. The cancer world is a very scary place so a kind word may help a little. Hope that it was caught early for her. Another friend…some very good news regarding her Stage IV melanoma. She has undergone radiation to her brain for metastases; IL2 ( a very toxic IV drug) for the other widespread mets and had excellent results with the radiation to the brain mets…gone. The IL2 helped reduce some of her tumors but others grew. She enrolled in a clinical trial using the drug (IPI…..can’t spell the rest). Her most recent PET scan showed some tumors are gone and others are shrinking and no new growth. The lady has fought so hard against the beast. Now, at least for the moment, IPI has given her real HOPE. It is so wonderful to listen to her talk about what the scans mean for her life. It renews my HOPE that somewhere deep in the dead of night, a researcher is hard at work thinking of the possibilities and perhaps new ways and new drugs to attack the beast and give cancer patients and caregivers the kind of HOPE I heard in my friend’s voice.

Liz L (Liz_L)

11-7-10

8:58 AM

There is a long way to go – but we have made tremendous strides in help for caregivers. This blog is a single example. I’m still hoping for the illusive cure or even new therapies that help more and more people live with, instead of suffer from, cancer. A CT scan may have diagnosed my Mom’s lung cancer earlier (they found it pretty early since she fell, rupturing her spleen and forcing her to have an unexpected x-ray) but would it have prevented her from smoking for 50 years??? What would have stopped her before she started back in the (FD) Roosevelt administration??

Ned Lemon (Ned_L)

11-7-10

12:01 AM

Last night I had dinner with my son and his girlfriend. She is in her second year as a high school teacher. I was surprised when she mentioned that there is a tremendous problem with smoking on campus-more so than when she was in school. I find that outrageous. It’s part of the problem. Cancer is something that happens to grandma or to an unfortunate child pictured on a plea from a charity. It’s just the luck of the draw. People like “us” can deal with it on websites like this or in the chemo wards. Some cancers can’t be prevented or cured, but there’s a hell of a lot that can be done in terms of education and positive response. You see it here-NPR is presented as insightful and thorough, yet Leroy’s legacy has been treated like some sort of feature series-like the movie about a young lady who cooks all of Julia Child’s recipes as a personal expression of humanity. Story covered-done that-time to move on and “promote” something else. “Our Cancer” is a small link in an effort that involves everyone, all the time.

betty obst (bettyoops)

11-6-10

5:37 PM

I hailed yesterday’s news with great relief; just can’t imagine why they found it so surprising that CT scans will reveal lung cancer tumors earlier, when there is a better chance of treating them for survival. Just wish they had that as a routine test for heavy smokers before my daughter was diagnosed; perhaps she would still be with us. Thank God that others will benefit from these early scans.

Sasha Degaspar (Dolly)

11-6-10

8:37 AM

It’s true laurie, when you are a caregive to a cancer patient, every day is a new surprise. Unfortunatey, there is no handbook to follow. We just seem to take one day at a time; we have no other choice. All of us here at OC know that we were self taught. The only suggestion I could come up with is to join our community here or find another one like ours. We were the teachers for one another here. This blog was of great help to each and every one of us, giving us support, strength and courage. I know, I could have not done it without everyone here………..lifting

11-4-10

6:22 P

Sparky

The world lost a true gentle man today.

Many years ago when I was a young sportscaster at CBS NEWS, I covered the National League from my hometown of San Diego.  That meant I was lucky enough to meet and interview Sparky Anderson many times when his Cincinnati Reds would come to town to play against the Padres. Those were the great days of the Big Red Machine,infact, the inscription on Sparky’s plaque at Cooperstown, where he is a member of the Hall of Fame, describes Sparky as “the crank that turned the Big Red Machine.

I was the first female sportscaster to cover a Majoy League Baseball World Series.  I’m here to tell you, baseball was not exactly overjoyed to see me there either.  I wasn’t allowed into the locker room for pre or post game interviews.  So when I arrived at Riverfront Stadium for game one in 1975 the guard at the door took extreme pleasure blocking my way.  I wrote a note explaining my problem and convinced the guard to deliver it to Sparky.  Next thing I knew Sparky was at the door, yelling through it actually, saying he was just coming out of the shower, but he’d meet me in the dugout so I could get my interview.

There he was, dripping wet but with a smile on his face and just like always, one of the best interviews in the game.  And we made plans to meet and do it all over again for the rest of the series.

Sparky was one of the best minds in baseball.  But more than that, he had such a positive approach to life.  He loved his players and vice versa.  Respect, that’s what he gave the men who took the field under his guidance.  He got results too.  The first manager to win World Series titles in both leagues.  Back to back with the Reds in ’75 and ’76 and then in Detroit in ’84.

Sparky was 76 years old when he died.  But he will always be that feisty, fabulous baseball man who had such passion and love for the game.

It’s reported that at his request there will be no funeral or memorial service. I’m so lucky to have my own memories.  Rest easy, Sparks.

Comments:

Dianne West (Dianne_in_Nevada)

11-5-10

1:04 PM

This Detroit Tiger fan loved him, too. He always brought a smile. RIP Sparky.

Sasha Degaspar (Dolly)

11-5-10

7:48 AM

We are so blessed to have good friends and good memories. And, I can see Laurie that you have many of both. Still lifting…………

11-3-10

5:12 PM

Hard Choices

Cancer forces us to make decisions.  Life and death decisions.

When to continue treatment, when to stop.  When to decide you’ve lived your life and it’s time to let the disease take it’s course.

That’s the place my friend faced just a few days ago.  Her doctors told her the chemo for her particular cancer has not stopped the growth.  They could try a different cocktail but that would be trying level two.  Level one, the best shot they had at slowing down the cancer failed.  Logic tells her, level two chemo probably won’t put much of a dent in the beast and she concluded, why bother?

The doctors have come up with a few other alternatives, but she’s just not interested in going through more treatments she knows will make her feel bad when the odds of helping her to live a good quality of life, are slim.

So she chose hospice.

What courage it must have taken to make all of these choices.  No more pushing back on the cancer.  What ever medicine she’ll take now, will be for pain and comfort.

No one can say how long it will take before cancer claims this life.  I’m not sure it really matters.  What matters is this person is at peace with her decision.  That puts her in charge of her life, right up until the last breath. And that means cancer isn’t in charge.

What a way to go.

Comments:

Al Cato (tennisbum)

11-7-10

4:38 PM

A choice she made….for me that’s the key….she chose the remainder of her journey. I wish for her peace…..peace in her mind and peace in her soul. The drugs will keep the pain at bay. I hope that she will take this time to say her goodbyes to family and friends. This may be so difficult to do but it will give everyone who matters to her an opportunity to say those things that often go unsaid. A friend of mine had a “living wake” for her husband 2 weeks before he died. She said of all the things she had ever done in her life, this was the best thing she ever did.

Brady Merrill (SAOC)

11-4-10

12:55 PM

Laurie I hope your friend gets the quality of life she deserves and has earned by her struggles. What choices patients and care givers are asked to weigh and answer once the door into ‘crazy land’ is opened. How can anyone prepare themselves for these questions, let alone the know the ‘correct’ answers? ‘Courage beyond belief’ I guess that says it.

Sasha Degaspar (Dolly)

11-4-10

8:08 AM

I can remember not even wanting to hear the word hospice, knowing that hospice meant John’s journey was coming to an end. However, when they visited my home during the last two weeks of John’s life, they were wonderful and comforting.

Dianne West (Dianne_in_Nevada)

11-4-10

2:10 AM

Yes, so very courageous and yet so difficult for the caregiver who has been in ‘full battle’ mode for so long to accept. That is exactly what my dear Vern decided. He had fought so long and through so many serious issues and was so very tired. Stopping all treatment and entering hospice was hard for me, but those 4 days I had with him there were filled with such precious moments and love that it was a real blessing. It’s been 6 weeks today and while I miss him terribly I am so grateful he is no longer in pain.

betty obst (bettyoops)

11-3-10

10:57 PM

A very difficult decision and we in cancer world often struggle with it. I often think if it was “my” decision, and I had experienced the rough “treatment” so many others go through, I would give Hospice a lot of thought. It takes a lot of courage and trust to “let go” in this situation, but once you do, it really is a form of “taking control”. I’ll keep your friend in my prayers!!

Ned Lemon (Ned_L)

11-3-10

8:30 PM

I just heard that my friend’s prostate cancer is making another move. I hope he’s ok. -The longest moment of my life was waiting for my wife’s response to her doctor’s recommendation to start hospice care. I remember a great sense of relief between doctor and patient-it was a private moment between them. When she responded in the affirmative they both looked down and exhaled. I still don’t know exactly what they were feeling, but it wasn’t defeat.

Kathie Scott (KTS)

11-3-10

6:27 PM

Courage beyond belief.

11-2-10

5:31 PM

FREEDOM!

I spent some time yesterday with my friend Bruce who just days ago, six days actually, had a bone marrow transplant.  He has this awful leukemia and this BMT has got to work if he’s going to walk out of Hopkins and walk back into a full life.

These transplants can be very rough.  Right now he is in a bubble of sorts.  He feels great. He looks great.  We walked around the hospital and he really had a spring in his step.  As his counts bottom out, he is untethered from his IV pole and that makes all the differnce in the world.

We were talking about how being hooked up to an IV drip is such a mental downer.  You can’t do anything or go anywhere without first thinking about that tube and where it needs to be, before the rest of you has to follow.  But without it, it’s FREEDOM…

Bruce is a smart guy.  He knows that soon his immune system and blood counts will be down to zero.  He’ll be faced with some difficult side effects that will probably make him pretty sick.  And that IV pole will no doubt become an extension of his being again soon.

But every extra hour he is IV free, he is who he was before all this started.

We all know that in cancer world, there is no better feeling than that.

Comments:

Sasha Degaspar (Dolly)

11-3-10

4:10 PM

I’m so happy that your friend Bruce is doing well. However, it’s so very sad to hear that sooner or later he will have to hooked up to the IV pole once again. WHY CAN’T THIS RELENTLESS BEAST BE STOPPED PERMANENTLY? Now we have to start thinking about “The boys in the basement” once again and hope they come up with a miracle drug…………Except for a few rare cases, the beast always manages to win. Sorry for sounding so negative…….just having a not bad day………..lifting

11-1-10

7:55 PM

OUR STORY

Sorry this is so late.  I’ve been up at Hopkins all day.

Today was rehearsal day for me.  I”m the keynote speaker at a conference on November 20th, up in Baltimore. The folks at Johns Hopkins approached me a few months ago and asked if I would tell my story to the gathering at “A Woman’s Journey.” “One day that could change the course of all others.”

The conference will offer women a number of seminars that will cover health issues and life issues and preserving both.

“MY” story is really “OUR” story…Me and Leroy.

It was an emotional day for me.  I wrote the speech and felt the tug of memories as I was writing, but to actually say the words to a small group in a room this morning at the rehearsal made it real.  You all know our cancer story.  Leroy wrote a little bit about it on the “My Cancer” blog and I certainly filled in some of the blanks on this blog, but the other parts of our life have been tucked away inside my heart for quite a while.  There’s a place where we all keep our memories for safe keeping.  Especially now, since we’re not able to make new memories together, I guess I’ve been protecting the old ones.

I’m exhausted.  It was a hard day of remembering.

Comments:

Nan Holmes (BigMailbox)

11-2-10

5:59 PM

What a great opportunity to take your message to the wider world. I know it will ring true to those who hear it.

Al Cato (tennisbum)

11-2-10

1:04 PM

What a terrific opportunity to recount yours and Leroy’s story. I know that it will bring up memories that have been tucked away for just you. I’m sure the pain will be refreshed once again as you speak. You are doing something so important, really important!!!! You are speaking out loud and in a very public way for all whose stories have only been recounted to family and close friends. You give a voice for thousands. The stories are similar. The journeys are much like yours and Leroy’s. Their pain and loss is acute in many cases while also lingering for many years for others. You give a voice where there is often silence. Tell your story; stand tall; remember, the mighty oak will be there with you. Thank you for all you do for us. Blessings to you.

Sasha Degaspar (Dolly)

11-2-10

8:26 AM

You are a very special person Laurie. The people at Hopkins are so very lucky to have you. Wishing you peace……….lifting

Dianne West (Dianne_in_Nevada)

11-2-10

2:11 AM

I’m sure it was a hard day, but what a gift you provided to those who attended. Bless you, Laurie, as you wrap your heart around sharing those very special memories.

Kathie Scott (KTS)

11-1-10

8:26 PM

I know that must have been so difficult but as usual you showed enourmous strength to help others. You will have an enormous impact on the people attending that conference. We all have stories tucked away in our hearts that can be hard to verbalize but maybe someday when the time is right. Today one year ago was the beginning of the last week I had Jim so everyday is reliving what was going on that day. You’re right we cannot make new memories so we must hold the old ones tightly.

October 2010

10-29-10

6:33 PM

BOO!

 

It’s a big weekend.

At least for those of us who love Halloween.

In the bank this morning, a man was talking about how he never did anything for Halloween and now with two little kids and a wife who makes costumes and decorates the house, he’s slowly starting to appreciate the finer points of the holiday.

So, I told him all about how Leroy and I would celebrate with a party for a hundred.  A come as your favorite story of the year theme would produce some of the best costumes on the planet.  We had really creative friends who just happened to be in the business of following the news.  The costumes they would come up with would astound me year after year.

It was so much work to get ready for this event, but it was worth it.  The house was filled with music and conversation and laughter.  It was the best.

I don’t get many kids at my door.  It’s just too dark around the neighborhood and I think parents are so worried about their kids these days, they take them to the mall instead of trick or treating around the hood.

Too bad.  We had some of our best candy hauls just going to our neighbors, when I was a kid.

So if you’re celebrating this weekend, do it with gusto.  Put on those orange and black socks you’ve been saving since last year and wear them with pride.  Carve a pumpkin or put on a costume.

Have a Happy Halloween.

Comments:

Dianne West (Dianne_in_Nevada)

10-30-10

2:31 PM

Me, too, Sasha. Happy Halloween to all – may it bring some smiles.

Sasha Degaspar (Dolly)

10-30-10

7:45 AM

Happy Halloween Laurie. I would have loved to be at one of your parties!

10-28-10

6:22 PM

Strength vs The Beast

Cancer is such a beast.  I know you know it and I certainly haven’t forgotten how it tears away at the body and mind of its’ victims.  But today, I’m thinking about how it affects the family…the children.  They are in such a tough spot.

Kids look to their parents for strength and guidance.  They need them to be there with the right answers.  They need them just to be there.

So when a happy, normal household is split in two by cancer and a parent is forced to spend more time in the hospital than at home, what’s a kid to do?

Young hearts aren’t expected to process the seriousness of this disease. And to think it’s happening to their mom or dad makes it all that more difficult.

I thinking about this today, as I watch Bruce’s kids and I marvel at their resolve.  Where do they find their strength?  And speaking of strength, a salute goes out to their mom too. These are not easy times.  Cancer has created chaos, but she has remained in control.

It’s the only way to win this contest.

Comments:

Brady Merrill (SAOC)

11-1-10

10:58 AM

Looking back we can all think of how we would have ‘battled the beast’ differently. How we would have ‘fought the perfect fight’ and made no mistakes. Sasha you did all you could do and more, I am sure your children are proud of you and admire your strength. I am also sure the children fare better than we think. Yes the have the nightmares of the disease, and yes they struggle to make sense of the devastation the disease brings, but they somehow seem to keep up and to move forward just like we attempt to. We have all lived in the world of chaos created by the disease, I for one am always amazed at our collective strength and resolve. I am always humbled by y’all, your resolve to keep moving forward and willingness to lend a hand to another.

Sasha Degaspar (Dolly)

10-28-10

7:41 PM

When “The Beast” came to visit our house my children were already grown and had families of their own. However, we were still a family in crisis. Laurie…..you logged onto my website and read my son’s story “The Battle”………..I don’t even have to explain how cancer affected my children……….I wish I had as much control as Bruce’s wife…..maybe I could have alleviated some of the pain my children had to endure. Looking back in retrospect, I wish I was stronger just for the sake of my children……..lifting

10-27-10

4:48 PM

HAPPY BIRTHDAY BRUCE!!

The clock is ticking. The minutes slowly turned into hours during the middle of the night while my friend Bruce watched the slow process of bone marrow transplant unfold.

This was the culmination of months of preparation after being diagnosed with an ugly form of leukemia.  This could give him many more years of life.  A good, healthy life, where he will watch his kids grow up and experience all the joys of living.

It hasn’t been easy.  He had to find a donor.  Many were called.  Some, even though they signed up to be donors, changed their minds.  One even said “It wasn’t a good time.”  If you can believe that!! And once a donor is located, there are so many tests to make sure the donor has healthy marrow.

During this time, Bruce had to go through rounds and rounds of Chemo.  He endured the brutal side of leukemia too.  Cancer, as you know, doesn’t just sit around and wait to be wiped out.  No way….it gets busy doing bad things to the body, so he had to deal with that too.

So now, he waits.  The new marrow is in his body.  It’s like today is a brand new birthday for Bruce.  He’s brand new!! He’s 63, but he’s got a brand new immune system that is cooking away and when it’s ready, will present him with bone marrow that will hopefully spit out healthy red and white cells and an immune system that will prevent that nasty leukemia from ever coming back.

So the clock started at zero around 4:30 a.m. last night.

HAPPY BIRTHDAY BRUCE…AND MANY, MANY MORE HEALTHY YEARS TO COME

Comments:

Brady Merrill (SAOC)

10-28-10

4:49 PM

Go Bruce, Go!!!!!! May you have many many more happy birthdays!

Nan Holmes (BigMailbox)

10-28-10

4:15 PM

Bone marrow transplants are no walk in the park. Bruce, may you have many, many happy birthdays.

Sasha Degaspar (Dolly)

10-27-10

10:43 PM

Happy Birthday Bruce !!!!

Ned Lemon (Ned_L)

10-27-10

10:27 PM

“It wasn’t a good time.” -?- What are we thinking?….or not.

Kathie Scott (KTS)

10-27-10

8:03 PM

Ditto!

10-26-10

5:48 PM

We Remember…Always

It was a sentimental journey, this trip to Maui.

Some many of Leroy’s best friends were not only with him in spirit, but they sent along some wonderful notes, mementos and pictures for me to use at his tribute on the beach. I brought along his flip-flops, Emily, a dear friend in Maui, made the most beautiful plumeria lei’s in all different colors. Alanna, another Maui friend, made her famous Poi loaf bread. Something Leroy loved to snack on when we would make our regular visits to the island. Leroy’s oncologist made a giant cookie that said “Beat Cal” in frosting…a little rivalry they had from years ago…Christian went to Stanford and Leroy to Cal! Notes of friendship, pictures, special rememberances of special times…all of these things went with me on my raft into the ocean.

It was the perfect day too. Electric yellow sun bounced off the blue water like a bright smile. Once I got out past the wave line, the ocean was flat, except for a huge sea turtle who showed-up at the right time, to snack on all the treats. He created a little wave action with his flippers.

And then there was the pink coral heart.

It was the perfect “hello.” The perfect way to say, “We remember.”

Always.

Comments:

Sasha Degaspar (Dolly)

10-27-10

12:56 PM

Again Laurie, you bring tears to my eyes. Leroy will always be remembered by all. He left a legacy and he left us YOU dear Laurie. Thank you for being here………..lifting

Brady Merrill (SAOC)

10-26-10

9:23 PM

Laurie what a wonderful tribute and way to say ‘we remember’. Your right, we do remember and will not forget, ever!

10-25-10
6:20 PM
The Heart

I’ve traveled miles since we last talked.  Many miles in the air and by car and on my own two feet.  I’ve done a lot of thinking and reminiscing and it’s

hasn’t been easy.

It had been two years since I stepped on the beach in Kaanapalii in Maui.  Two years since I scattered Leroy’s ashes in his ocean off that beach.  Two

years since that final good-bye.

I remember the wind blowing so hard.  The ocean was choppy and the sun made the day bright and clear.  It was the hardest day of my life.

Now I was back to touch those memories all over again.  I was standing in the water, when I felt a tap on my shoulder.  When I turned around there

was a young woman standing behind me.  She looked at me and smiled and said, ” I don’t know why you’re here, but I know whatever it is that brings

you here is important and I know you should have this because it will mean so much to you.”

With that, she put a piece of pink coral in my hand.  It was in the shape of a heart.  A perfect, beautiful heart.

I thanked her and told her she had no idea how much it meant to me…that this was a very special place…and with that, she nodded and walked away.

Some things are better left without explanation.  They just happen.

It’s nice to be back.

Comments:
Dianne West (Dianne_in_Nevada)
10-27-10
9:40 AMWhat a very precious gift. Thank you for sharing it with us. So good to have you back with us, Laurie. Maui is where I plan to release some of Vern’s ashes (we loved Kaanapali, but Hana was our special place). I’m not quite ready to do that yet, but will keep you and Leroy in my heart when I do get there.

Brady Merrill (SAOC)
10-26-10
12:47 PM
Laurie, isn’t funny, humbling and touching what life brings to us when we are in need? i am glad you were there and ready to receive the gift and accept it. welcome back!

 
Sasha Degaspar (Dolly)
 10-26-10
10:02 AM
Dear Laurie, you just brought tears to my eyes. Leroy was right there by your side. So glad to have you back. You were missed…………..lifting

dorothy morris (dorothy_oregon)
10-25-10
11:52 PM
Laurie, glad you are back. I am sure your trip emotionally was hard but I am so glad that that young woman found you.

Kathie Scott (KTS)
10-25-10
7:34 PM
Oh my gosh, Laurie, that gave me chills. That young woman will never know what that must mean to you. Once again I think Leroy was telling you all is ok. I’m glad you made this trip and glad you are back.

10-20-10
10:08 AM
Heading Home

 HOME AGAIN

I’m on my way..with so much to say.

laurie

Comments:
dorothy morris (dorothy_oregon)
10-23-10
3:02 AM
Glad that you are back Laurie. You have been missed.

Dianne West (Dianne_in_Nevada)
10-22-10
3:21 PM
Welcome home to Our Cancer … happy you’re back and looking forward to hearing your voice again.
 
Brady Merrill (SAOC)
 10-21-10
9:48 AM
Laurie welcome back, can’t wait to hear your thoughts again.

Kathie Scott (KTS)
10-20-10
8:37 PM
We’ve missed you but everyone is entitled to their time away…welcome back.

Nan Holmes (BigMailbox)
10-20-10
6:01 PM
I think that gives all of us something to look forward to.

Sasha Degaspar (Dolly)
10-20-10
2:05 PM
So glad you are headed back……….missed you

10-7-10
7:08 PM
The Blues and Greens of the Day…

If yesterday was a Kodachrome day, filled with reds and yellows, today would be an Ecktachrome day filled with blues and greens.

I’m talking about the blues and greens of the Pacific Ocean.

Once again the salt air, the white foam of the waves and the soothing colors of this wonderful ocean have managed to calm my unsettled soul.

I know now why I’m a little off my game these days.  It’s that time of year… two years ago I was getting ready to make the toughest trip of my life.  Traveling to Maui to grant Leroy’s last request to scatter his ashes in his ocean.

He rests in peace, far away from the turmoil of cancer. 

I’m not quite there yet…but the blues and greens of the Pacific certainly help clear the way.

Comments:
Sasha Degaspar (Dolly)
10-20-10
8:07 AM
Is there a problem with NPR and the OC Site? I don’t see any new posts.

Nan Holmes (BigMailbox)
10-18-10
12:10 PM
I have been away for 10 days, and thought I might have missed all sorts of posts. Maybe it has been a fall break for everyone. But no mater where I may be, I am always thinking of the people who post here at Our Cancer, and I always will.

Sasha Degaspar (Dolly)
10-8-10
9:16 AM
Dear Laurie, I wish for you and all of us here at OC more “Ecktachrome Days”…………still lifting

10-6-10
6:18 PM
I Can See Clearly

 ‘It’s been two years.”  They said it like I should be past the rough spots by now. I shouldn’t react with flashbacks like I did the other day at the cancer center.  Like I’ve said a million times, it hasn’t happened, if it hasn’t happened to you.

I see things all the time, that remind me of my care-giving days.  I see things that remind me of the pain and discomfort cancer unleashed on Leroy.  And when I see them, my mind flashes back to a variety of scenes from the years of fighting our battle.

This is cancer’s parting gift to us…it happened to us. The years of tender, loving care and the vision of a life, once strong and productive, fading into the grasp of this disease will just not go away.

“It’s been two years.”  Actually it’s been just a week shy of 26 months.

The images are seared into my memory. They might fade a little with time, but for right now, it’s all Kodachrome reds and yellows.

Comments: 
Laurie Hirth (LOR)
10-7-10
10:28 AM
Laurie, Sasha, Mo, Kathie… 2 years, 2 months, 2 weeks….it still hurts…and always will! We just try to find the different paths each day to lessen that evil. I have pictures around my house, I have had dates come over and they see them, so what! Those are my memories and I earned each one and I would be crazy to forget them let alone try not to remember them! That’s when we really hurt because we hide from the pain instead of trying to live and deal with it! Neil used to say..when you have walked a mile in moccasin’s, then you will know where I have been. It’s still Kodachrome almost 3 years later, but I keep moving forward and hang on to all those memories! Tears are always just below the surface and some days, they just can’t help but come pouring out! Sasha, you keep lifting, Mo, you keep writing, we couldn’t move forward if it wasn’t for the strength and love from this community! As Stan always said… thoughts…Love and hugs!
 
Sasha Degaspar (Dolly)
10-7-10
8:20 AM
People tell me to push forward and be thankful for what I had. They tell me to think of all the beautiful memories I had with John. These are people who have not lost their soul mate; those who don’t fully understand what it’s like to lose the love of your life. Most of the time I try not to reflect on the good years……..family gatherings, vacations, holidays……it’s too painful. I try and black everything out; for me this is much easier. I know there are many people who won’t agree with me, but we all grieve differently. I have John’s pictures all over the house, but there are days I cannot look at them; I go right into a meltdown. Yes, everything is still Kodachrome…………lifting
 
Maureen Doallas (Mo_D)
10-6-10
10:04 PM
I’m so glad you, all of us, have this place to say what no one else wants to hear. My father has been dead 20 years. I have not and will never “get over” seeing him die in front of me. Patrick: I picture him in my mind every day. More friends have died of cancer this year. One of my sister’s has been diagnosed with a condition, one that I’ve learned my brother had (only about 1% of the population gets it), that puts her at risk for esophageal cancer. Almost every week I get news of another friend with cancer. I want to go out in the street and scream really loud (but I’d be committed); I come here and unload instead. One of the things I fear is losing the Kodachrome reds and yellows, because nothing, certainly not the loss of our loved ones, is explained in blacks and whites.
 
Kathie Scott (KTS)
10-6-10
9:54 PM
I had dinner with a friend who lost her husband suddenly over 16 years ago and she still struggles a lot. She says people tell her she should be over it by now but you can’t just give up your soul mate. We talked about reaching to the other side of the bed in the middle of the night only to realize it’s empty. You think you are managing it and something like that happens and you feel like you’re back at square one and like you said,Laurie, it still a Kodachrome world.

 
10-5-10
6:07 PM
A Rough Day…

I wanted so much to help, but it wasn’t my place to step in, so I just watched from across the room.

I was up at the Cancer Center yesterday.  I was in one of the lobby areas, near the elevators.  It’s a space filled with all the faces of cancer.  Some who carry their I-V bags with them, hanging from a T-stand.  Others who have an oxygen tube laced around their ears so the nose piece fits tightly in their nostrils.  These are patients who carry the color of cancer in their cheeks.  A pale gray tone, bleached from multiple rounds of chemo or radiation. 

An older man was wheeling his loved one through the lobby. She was not feeling well. She may have just finished chemo or this might have been just another bad day in cancer world.  This woman held on to her pillow, burying her face in it, trying to hold herself together.  Her feet kept sliding off the foot rests of the wheelchair and this poor man just couldn’t control the direction of the chair and he was getting frustrated.  He tried so hard not to lose his composure. 

I wanted so badly to walk over to them both, put my arm around them and let them know anyone who has walked these floors, has experienced a day just like the one they were having. 

They eventually made it into the elevator and disappeared from sight. 

I never saw her face, but I looked at his as those doors closed.  The face of a care-giver at the end of his rope.

It was a cancer day from hell.

Comments: 
Sasha Degaspar (Dolly)
10-6-10
10:44 AM
My heart goes out to this man and his loved one. I will never forget those days at the chemo center. At the very beginning John did very well, but during the last year of his treatment things got ugly. John developed neuropathy and could no longer walk. I would have to get him into the car with a walker, then when arriving at the chemo center, I would have to run in and get a wheelchair. I think we can all relate to this. There were many “Cancer days from hell”………..The “Beast” has no mercy……….still lifting

Kathie Scott (KTS)
10-5-10
7:19 PM
My goodness haven’t we all had those days. I never wanted Jim to think something was more than I could handle so I just mustered another ounce of energy when I thought I couldn’t make it one more day sometimes. My heart goes out to that couple and everyone else struggling through each day. I attended a fundraiser for a friend who is confined to a wheelchair because of cancer and it’s treatments and I looked at his wife knowing what her days are like with working full time and being a caregiver. As hard as it was I would take it back in a heartbeat and I bet all of us would.

10-4-10
11:56 AM
A Glowing G-W Bridge!!

Chris Bonanno isn’t a member of “Our Cancer” but he deserves a shout out for making a big, bright statement against the beast.

You see, his sister is a cancer patient…breast cancer and this just happens to be National Breast Cancer Awareness Month and he wanted to do something to let her know he cared.

Chris is one of many electricians who work on the George Washington Bridge in New York.  His idea was to turn the light necklace that hangs across the bridge, PINK.  That of course is the color connected to breast cancer awareness.  So he went to work researchiing what light gels would work best and he reportedly scoured the internet and read up on how to best accomplish this tribute to his sister and all the others battling breast cancer.

Chris appealed to his co-workers for help and it turned out most of them had been touched by cancer is some way, so they were with him all the way.  And, his family weighed-in on choosing the best shade of pink too.  Even the Port Authority of New York and New Jersey approved the idea over the summer.

So the GW Bridge is now glowing pink for the month of October.  156 pink bulbs of light that send a message of love, hope and healing from a brother…and a bridge.

Comments:
Maureen Doallas (Mo_D)
10-6-10
10:08 PM
This fills my heavy heart today. What a wonderful way to express love.
 
Brady Merrill (SAOC)
10-5-10
11:58 AM
What a wonderful gift to his sister and what a sight that must be.
 
Sasha Degaspar (Dolly)
10-5-10
9:46 AM
Wow! What a statement he is making. I live about 45 minutes away from the GW Bridge…..will have to drive by.
 
Ned Lemon (Ned_L)
 10-4-10
10:25 PM
A bridge to healing -Soothing light to chase away the fear

10-1-10
5:26 PM
Smiling and Remembering

We’re on the cusp of another season.  I know the calendar already says summer is over and fall is upon us, but 98 degree weather last week and monsoon rains this week in my area, just doesn’t spell FALL to me.

This afternoon, the wind has picked up, the air has cooled down the leaves are beginning to fall and I’m starting to get a little sad.  It happens when each season changes but especially fall.  IF things hadn’t changed, Leroy and I would be in the middle of last minute preps for our big Halloween party that would be just around the corner.  The house would already be decorated.

I have a pumpkin this year, but I haven’t made my usual trip to the pumpkin patch.  It’s hard, even two years down the road, to do that. 

I have so many funny photos of Leroy in his costumes from years past..they make me smile through the sadness.

Deep breath, Laurie…Fall is just beginning.

Comments:
Maureen Doallas (Mo_D)
10-6-10
10:10 PM
I wish I could fill our little yard with pumpkins, and light them every night in love for everyone I’ve lost.
 
Sasha Degaspar (Dolly)
10-3-10
4:48 PM
Last year was my “Year of firsts”…….John died in June and I had a difficult time thinking about the holidays. I couldn’t wait for them be over and remember saying to myself “Next year will be easier” I’m sorry to say, it’s not any easier. As the fall approaches I feel myself sinking deeper and deeper into a depression. The days are shorter and the nights (which I believe to be the hardest to deal with) are longer. I know that time heals, but how much time do we need for the pain to go away?………….lifting
 
Ned Lemon (Ned_L)
10-3-10
10:34 AM
This was Penny’s favorite time of year. She loved the colors and the cool weather. It was time to start thinking about holidays and indoor family gatherings. We loved to steal an October afternoon to simply drive through the beautiful foothills. We lived close to one of the many beautiful lakes that are scattered across the region. We thought we found a paradise. I miss all that- but I miss her a thousand times more. I know cancer’s long shadow just blends into the twilight.
 
Dianne West (Dianne_in_Nevada)
10-2-10
12:17 PM
Two years for Laurie, a year for Kathie … I was amazed to read that that much time has already passed for them. TIME. People keep saying “time will heal”, “just give it time”, “cherish the time you had together”. I suppose all of that is true, but I’m not feeling it right now and I can tell that even though some time has passed for Laurie & Kathie, it’s not been a miraculous healer for either of them. Gathering the photos for the display during Vern’s service brought both smiles and tears. We did have a very good, long life together. But facing those upcoming ‘anniversaries’ alone is rather frightening. I can put on my game face when I’m at work, but when I’m at home I just want to curl up in a ball and cry myself to sleep.
 
Kathie Scott (KTS)
10-1-10
6:10 PM
I know. The one year anniversary of Jim’s death is coming up and I’m going through the “what were doing this day last year” thoughts. I can see more things clearly now but nothing would have changed if I had seen them more clearly last year. The sadness is almost overwhelming sometimes. Laurie, go to the pumpkin patch and get that perfect pumpkin….perfectly round and unblemished not necessary.

9-30-10
5:11 PM
Cancer’s Wizards

These last couple of days, I’ve been up at Hopkins working on a project that has introduced me to some of the best and brightest cancer scientists and clinicians in the world.  That’s a big statement I know, but after listening to these men and women, that’s how I feel.

Their work in cancer world reaches into the “now” and into the future.  Vaccines, therapies and treatments they are developing in their labs will eventually be the one-two punch that will give the beast a beating.  “Cure” isn’t a word commonly associated with cancer, but “chronic” is and that seems to be where a lot of these cancers are headed.  If they can be treated as chronic diseases, managed by medicines, that means prolonging life and that’s a pretty good step in the right direction.

So many cancers are unique to each and every patient.  A colon cancer in one body will probably be slightly different from another patients disease.  That’s why personalized medicine is also developing into a standard of treatment.  Multidisciplinary clinics, another way to give patients control, understanding and direction in their particular case, is another developing idea in cancer care.

I know none of this is moving fast enough for those living with cancer.  I always felt that Leroy came up on the short side of some therapies that would have made a difference in prolonging his life.  “If only” is a phrase I hear myself saying a lot. 

But I have to keep an open mind after meeting these doctors this week.  What they are doing will help others, there is no question about it.  For that, I am supremely grateful.

Comments:
betty obst (bettyoops)
10-1-10
9:03 AM
I feel that I will Al; biggest thing I have to fight against is getting so down again. I’m prepared this time though. I can really relate to what you are saying. It’s so heartening that the fight does go on to find ways to help live with, if not cure, cancer but it is frustrating in many ways. I never liked the idea of a placebo for the other half of a trial group; you’d think they’d use a drug that is at least getting SOME results and measure it against that. God bless the researchers, the trial participants and all who suffer from this disease.

Al Cato (tennisbum)
9-30-10
7:53 PM
I am grateful for the researchers and their work. I am, along with so many other cancer patients, so frustrated with the whole clinical trial process. It seems that all of these new and varied treatments are put into a pipeline that is so small that it takes years before anything substantive can be concluded about their effectiveness. They are still using a placebo arm in many trials…this should be criminal….at least give the patients in that particular arm some drug rather than sterile water. The retort is “well if we find that the patients in the other arms respond well, we will switch them over to these drugs”. Duh, by that time the tumor load could be so great that the patients’ chances of responding may be very slim. The clinical trials process is so antiquated and cumbersome that it is a joke as a process but it is all we have. Some trials go on for years including the drug that I take, Leukine….8 years for them to conclude that it doesn’t work except in certain cases…..8 years. They had to wait until 300 patients died who were in the trial to come to that conclusion…good grief, a child of two could have concluded after 200 deaths or 250 deaths that the drug didn’t work BUT NO, had to wait until the magic number was reached..300. All of these new drugs give us a chance and that’s all we want. BUT to be stymied by a bloated, bureaucratic process is a significant problem.. sorta sounds like the gov’t at work. The cancer fight is so difficult, as we all know but it seems we are fighting the bureaucracy as well. This is not just a rant from one single patient. I know that many highly regarded clinical trial doctors/oncologists are equally frustrated with the FDA’s responsiveness. Thanks Betty for asking about me. I am well. Hope you do well with your surgery.

9-27-10
7:12 PM
Dianne, We’re Here…

Dianne you have always been a part of our family and it is with that in mind, we all wrap our arms around you and encourage you to lean on our “group” shoulder.

Your loss is so personal and so deep.  Most people could never understand what you are feeling these days…we feel it here and we do understand.  Infact, losing Vern, more than likely takes each of us back to our time of loss.

As we’ve said many times in this space, you need to take good care of yourself now.  You need to cry and you need to remember the days when cancer wasn’t the deciding factor in what would be a good day or a bad day. Remembering helps.

I’m sure you have a solid support system closing ranks around you, but know this….You can always come here to share or vent or ask “What happens next?”

Cancer can’t cause Vern any more pain…he rests in peace now. 

We’re here to help ease your pain.

Comments:
Sasha Degaspar (Dolly)
9-28-10
9:06 AM
Once again Diane, we are all hear for you. I will continue to keep you in my thoughts and prayers……lifting you
 
betty obst (bettyoops)
9-27-10
9:37 PM
You’re right Laurie…I couldn’t believe how much it pulled me right back into the pain of those last days. I am glad that Vern and Diane both were able to obtain a modicum of peace towards the end. We are here for her and for all of the others who are placing down this burden only to pick up a heavier and lonelier one!!

9-24-10
8:45 PM
“PCS”

Kathie and Sasha both hit the nail on the head with their posts.

Kathie, I was just like you for a long time.  Charging through the daily routines at a normal pace, trying to keep things as they always where…I’m not sure if it was refusing to accept what was coming eventually or if I thought there would be time enough to change the routine when cancer moved into the drivers seat.

When it did, it hit me like a brick.  I did change then and I think I gave “us” the right amount of time to deal with the last phase of the disease.  I guess I’ll never really know the answer to that.  I wish I could ask Leroy that question, but of course I can’t. 

Some of his friends thought we should have called hospice sooner.  But that takes me back to “it hasn’t happened, if it hasn’t happened to you.”  They weren’t living in my house.  They weren’t privy to Leroy’s wishes.  I was.

That brings me to Sasha’s comment.  “We are the experts.”  Yes, we are.  We are the veterans of cancer’s war on our loved ones.  We are the ones going through the phases of “PCS.”  Post CANCER Stress, as I like to call it.  It’s as real as PTSD, with many of the same symptoms. 

The best part of having PCS, is this community.  It’s here for all of us…in the toughest of times.

As Sasha always says…”Lifting”
Comments:
dorothy morris (dorothy_oregon)
9-27-10
5:29 PM
Dianne, You are in my thoughts and prayers today. Our arms are wrapped around you.
 
Nan Holmes (BigMailbox)
9-27-10
4:07 PM
Dianne: Please know that you are in my thoughts and prayers. I am very sorry for your loss. Surely this will be a place of comfort and understanding.

Sasha Degaspar (Dolly)
9-27-10
10:46 AM
To all………I have trouble getting on the discussion site. If I don’t respond to certain posts please forgive me. Dianne my heart aches for you. Please come to this main blog page for support. We are all here for one another. We share a common bond……….lifting
 
Kathie Scott (KTS)
9-25-10
11:10 AM
Dianne and Sasha…it seems we are the three musketeers in a sad sort of way doesn’t it? There are so many here who have lost their spouses/children and we are all in a different spot of grief. Sasha and I are farther into the process but I don’t know that it’s much easier. I have made progress but sometimes I go back to square one over the simplest of things. Dianne, this if fresh and raw for you and my heart is breaking for you because I remember the first few weeks. I went back to work after 2 weeks because I couldn’t stand to be alone all day and night. Only you can decide what is right for you but whatever you do it will be your decisions and we will be right here for your. Laurie’s PCS term is so on the mark.
 
Dianne West (Dianne_in_Nevada)
9-25-10
10:20 AM
I haven’t been visiting Our Cancer as often lately. I was too busy still caring for my dear husband, and I didn’t feel the same connection to the blog since I was still in full battle mode. That has changed. My precious Vern passed this week, so I have entered your ranks, Laurie, Kathie, Sasha. I now know the pain, the loss, the brick wall. I will be visiting you regularly for support.
 
Sasha Degaspar (Dolly)
9-25-10
3:21 AM
I have said this many times….. if not for this community here at Our Cancer, I don’t know how I would have gotten through the past four years. This was my safe place; the place where I could come and purge without being judged. People who have not walked in our shoes could never imagine what our lives were like and what we are still going through trying to stay focused and move forward. Yes, PCS is very real and it hits you like a ton of bricks, both emotionally and physically. Yesterday was my wedding anniversary, and as hard as I tried, I could not stop the tears. This is when it hits you phycially. I drank a little too much wine during the afternoon. I cried myself into a migraine headache and stayed in bed for most of the day. The sad part about this is………..NOBODY GETS IT ! People are already starting to tell me it’s been over a year since John died and that I have to move on and maybe try to meet someone just for companionship. I’m not looking for a companion………I’m still mourning my beautiful man. But, I guess everyone is different and I should not pass judgement on them. I will tell you this……..I met someone on this blog site three years ago and we decided to email one another. It turns out that she also lives in New York. Her husband was sick and undergoing chemotherapy the same time as John. Her husband died exactly one year before John. I met up with her for lunch after John died and she told me that she was in a relationship. She was very lonely and someone introduced her to a very nice man. I’m very happy for her. However, I don’t think I’m ready for that just yet. I think I will have to get over the PCS syndrome before I can move forward. Thank you Laurie and Kathie for continuing to post. Lets go dear friends……………1-2-3- LIFT
 
Kathie Scott (KTS)
9-25-10
12:41 AM
I feel like we are “experts” in a profession that we never studied for. There were no classes to tell us when to take the big steps, when to work less, when to go more, when to call hospice, when to alarm the family or when to give them news but with hope. I often asked my close friends when I should do this or that but all they could do was be sympathetic or support my decisions because they had not lived this life. I got my comfort and advice from my friends here and made the best decisions I could. All of us here have depended on each other for the expert advice. I think the PCS is very real…you are going at warp speed and you hit the brick wall and nothing is the same and there is no reward for getting through the journey.

9-23-10
6:54 PM
Living It

No question about it, there is a common thread that ties all of us together.  The frayed edges of that thread hang out there so the next one to lose a loved one to cancer can grab on and weave their way into our group.

It clearly doesn’t matter how long ago the loss occured, the gap left behind remains open and the pain rises up at times, no matter how hard we all try to move forward.

It’s always so great to hear from Laurie Hirth as she tries so hard to make a new life for herself.  Old friends to this space have a way of returning when it really counts.  They share their wisdom and experience and it’s greatly appreciated.

Cancer changed us all and as we move forward we need to exchange our ideas on how to make it a smoother transition.  The experts say it’s not healthy to hold on to the ache.

But that brings to mind another thought…It hasn’t happened, if it hasn’t happened to you!

They might be experts, but we’ve lived it.

Comments:
Kathie Scott (KTS)
9-23-10
8:48 PM
I wish I had admitted to myself that time was our enemy. I always felt if I said or did things that indicated time was short so we better stop and smell the roses, was an admission of defeat. If I could go back and change one thing in the way I dealt with Jim’s illness it would be to accept that we knew his time was limited and make every minute count. Don’t worry so much about spending that little extra money for a memorable trip, don’t worry if your sick leave keeps building so you can use it later….sometimes later just doesn’t come. As far as dealing with the sadness afterward there is no roadmap for that either. I think while we are all feeling the same emotions we deal with them differently with guidance from those who have gone down the path.
 
Sasha Degaspar (Dolly)
9-23-10
7:43 PM
Dear Laurie, As always, your posts are straight from the heart. We all share the same common bond and we all totally understand one another. Forget the experts……..you are so right………we lived it ! We are the experts……….lifting

9-22-10
4:34 PM
A Message from Maui

Sounds to me like many of us are in the same boat. 

We’re all living with being “alone” and hurting because of the “lonely” part.  We seem to be lucky enough to have a good support group.  Good family and friends around us but that’s not what’s missing.  We miss “them.”

It’s just a few weeks shy of two years ago, when I took Leroy’s ashes to scatter in his ocean off of Maui.  It was probably the single most difficult thing I’ve ever done.  From the moment I left our home for the airport, I’ve never felt so shattered.

I found something in Maui, on that trip, that has helped me so much, ever since…it was a figure of a large man, squared shoulders, a big guy, kind of like Leroy.  It was a papier-mache art piece and on his chest are the words, ” Don’t cry because it’s over. Smile because it happened.”

I’m not suggesting this will cure the “alone” part of our lives, but it will put a band-aid on some of the hurt.

Any thing that does that is worth sharing.

Comments:
betty obst (bettyoops)
9-23-10
12:09 PM
Laurie S…. I love the picture you evoke of seeing the paper maiche man. I can really relate to how you connect him with Leroy and the comfort you received from it. He was so much larger than life!!

Sasha Degaspar (Dolly)
9-23-10
8:47 AM
I carry John’s picture in my wallet and I also have his picture on my cell phone so that everytime I use it the first thing I see is his beautiful smile. This helps put a band-aid on my wound which is still open. I have pictures of John and myself all over my house. However, I’m still not able to watch him on a video……to hear his voice…. see him at a family holiday dinner……..maybe one day I will find the courage. Let us continue to lift and support one another.

Laurie Hirth (LOR)
9-22-10
8:47 PM
Ohhhh.. that “alone” part… even almost 3 years later, it still gets me. I stay so busy sometimes I just wipe out and need a “Laurie” day. Just sit at home and get my chores done or do absolutely nothing. I know all that busyness is because, even now.. I still miss my guy! I am adjusting, I am learning to be alone, I am even dating on occasion, but I am learning to live and that is the hardest part. I always had someone around, and now it’s me and the boys. I have some awesome friends here, they let me talk when I need to and they let me hurt and are there to pick up the pieces because I still don’t know how. It’s all a learning process.. a step at a time. I still follow what goes on here, I am so proud of all of you. Your journeys are all so similar. It’s a learning to survive mode and your doing the best you can. That’s all anyone can ask of you. love and hugs…
 
Kathie Scott (KTS)
9-22-10
6:16 PM
Funny that Leroy was waiting for you in Maui. I search for that and I know I won’t find it, it will find me. I go to the cemetery expecting something to happen but it never does. The “lonely” may be a mental thing but it sure feels like a real ache sometimes.
 
Nan Holmes (BigMailbox)
9-22-10
5:36 PM
While the alone part is very hard, I have watched someone dear to me hate being alone so much that they are in a very destructive relationship–the second one since losing a spouse. The fear of being alone has damaged the ability to see clearly and think rationally.

9-21-10
6:09 PM
From Last to First

Did you really feel like you were putting yourself last?

I bet not.  Those were times when nothing else mattered except making your loved one feel important.  Making sure they were engaged in as much of a normal life as possible.  In our house, it was playing cards or board games or watching favorite tv shows together or watching favorite movies. 

He would ask for favorite foods…that was one of the easiest wishes to grant.  The daily trips to Starbucks for his venti Iced mocha’s.  All things that made his days easier when the cancer got tougher to manage.

I wonder if I even noticed the life I lived had gone away.  It was replaced minute by minute with things that needed to get done around the house. There were doctors to see, tests to be done, most of these things revolved around Leroy’s day and that was fine by me.

I’m like most of you, I’d give anything to have him back.  But I wouldn’t want him to have to live with the misery of the cancer.  No one should have to do that.

But to be able to dial back the clock…to remember who I was back then, who WE were back then.  Back before cancer changed everything..going from last to first.

Comments:
Irene P (Irene)
9-22-10
2:13 PM
I get a little panicky on special days like anniveraries too. Like how will I get through it. Sasha I hope you can find a remembrance of a happier time, maybe some photos, to savour on your anniversary.
 
Sasha Degaspar (Dolly)
9-22-10
8:53 AM
Laurie, as always, your post reflects exactly how I feel. After reading your post and Kathie’s post, I can totally relate to everything. I too want John back……but without the suffering. But, this is not happening and I have to come to accept this. I’m having a very rough week. Friday is my wedding anniversary and I’m so very sad. I have come to realize the difference in being “Alone” and being “Lonely” I have my family and friends to support me, but no one can take the “Lonely” away. I know we can’t turn back the clock, but I’m not liking my new life!
 
Kathie Scott (KTS)
9-21-10
8:18 PM
Laurie, you are right…I never felt like I was putting myself last. There was no “order” because I was doing what I wanted and needed to do for the man I had loved for so many years. Things changes so gradually in the beginning that I never felt anything was drastic until the end when I was told the end was near and I was so unprepared. I guess because Jim, except during the time of his brain surgery, was not in constant intense pain I do want to be back where we were. However, my prayer every day was for him to not linger and suffer in pain and I got what I prayed for. Life was such a whirlwind and then it wasn’t.

9-20-10
5:23 PM
Last

I’m sure you’ve all seen them in boutique stores.  Magnets with clever little sayings written on them.  Sometimes they just fit your life.  Sometimes you read one you just have to buy for a friend who is going through some difficult times.  It’s an uplifting sentence of hope or love or caring.

So there I was in one of those little stores the other day and there “it” was too.

“Remember who you were before you put yourself last.”

It stopped me in my tracks.  I thought, this is the caregiver’ s slogan.  Whoever came up with this one has lived in cancer world.  Being a caregiver you naturally put yourself last.  That’s not a negative, it’s just a fact. 

Care giving requires a readjustment of priorities.  At least my life became a life devoted to my loved one’s well-being.  I wanted Leroy to live another day and if it was in my power, as a caregiver, to help make that happen, I did what I could to get him to that next sunrise.  Part of doing that meant putting me last and I was fine with that.

I just never thought I’d see the thought written down on a magnet
Comments:
Sasha Degaspar (Dolly)
9-21-10
3:58 PM
There is something wrong with this site………I submitted a comment twice and it was never posted. However, as caregivers, we all put ourselves last and we do this out of love not obligation. For me, it was a role reversal because John always took care of me. I always came first, aside from my children. And now, I’m still last……..my children still come first. It has been fifteen months since John died and I still feel like I’m drowning at times. When does the wound stop bleeding?