We've all called upon it at one time or another during our walk through cancer world.

Sometimes I think we don't even know we're looking for it because our thoughts are so deep and our feelings so fixated on the moment.

Hope is what keeps us in the game.

Where are you on the "Hope circle?"

Newly diagnosed patients and caregivers are full of hope.  The fight is just beginning and terms like "beat it" and "we got it all" open the doors to hope.

Treatment and feeling the effects of chemo and radiation sometimes causes hope to wobble a little.  It depends on what kind of day it is: a good scan, a week outside of a chemo infusion and hope tends to grow and flourish: the opposite occurs and the scans show new growth or treatment was yesterday and hope is taking a few days off.

Hope shifts if the disease becomes metastatic and survival is measured in weeks or months.  The hope isn't for cure any more, but instead for comfort and as little pain as possible.

Unfortunately there isn't a HOPE store in a mall some where that sells boxes of the stuff.  You can't find it on the Web either and there's no amount of points or miles you can trade-in to replace what's been used.

Hope is a state of mind.  Webster's says "trust that is wanted will happen"

That's a very good place to start.

 

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It worked!!!

A couple days ago I mentioned that I had passed along the suggestion of putting a bar of Ivory soap in the bed at night for those suffering from certain side effects to treatment.  My cousin is the N-E-D breast cancer patient and she's been trying to manage painful leg cramps that creep up her legs at night and keep her from any sleep.

When I told her about it she thought it was the craziest of ideas.  I couldn't disagree.  I also told her, when it comes to cancer, sometimes the wildest approach can sometimes be just the ticket to relief.

So tonight, there's one more "believer" in Ivory Soap and it's mysterious powers.

I guess, soap isn't just for the shower anymore!!!

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I've mentioned the widows' group I'm a part of and how we get together from time to time to share a meal and our memories.

Over the weekend it started with chit chat and morphed into real "widow-like" talk.  

I'm not a joiner, so I don't know about other groups, but I think we turned a corner in this group and that the conversation was real.  It dealt with real life, every day concerns that come with being alone, grieving, and just getting older without growing old with your loved one.

We're all in different places with our widowhood.  So I like that we can share our experiences and those of us who have been "there" can relate and help guide those who are just hitting that bump in the road.  We're all grieving differently too.  I think that has to do with where we were in our relationships when cancer entered the picture and how we were as caregivers: some of us were more "hands-on" than others. 

The future was a hot topic this time around: How to become less "invisible" and more "alive," and  facing the scary world of dating, even how to meet someone has awakened in some, while others shudder to step into that puddle.

I'm telling you, it was a new place for all of us, at this gathering. 

I came away realizing that cancer took away not only our lives as we knew them,  but it took away who we were: our identities were stripped away and if you knew any one of us you'd think we were strong, independent women. 

We were honest and open and looking for answers.

Cancer Widows Woes are real.

 

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It doesn't matter if you're a visitor, patient, caregiver, or first timer walking through the doors at the cancer center, eventually, you end up in line to pay for parking.  You must have that ticket processed before returning to your car so you can exit the garage.

The family in front of me presented their ticket to the attendant with the question "Do you get a discount if you're a patient?"  The attendant answered by suggesting they buy a book of parking stickers at a discount, instead of paying for each visit separately.

"OH," said the older man, who was clearly the husband and dad of the group, "I've just spent the day here for tests.  I feel great and don't expect to be coming back."  "There's no need to buy a book of stickers."

His son, with half a smile on his face, looked over at his dad and walked away, saying he'd be waiting at the elevator.  The wife and daughter waited until the transaction was complete and the three of them walked down the hall together, holding hands.

HOPE means never having to buy a book of parking stickers.

 

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The more we talk about cancer's impact on our lives, the more I come to realize, we must find a way to handle the punch it lands squarely on our hearts.

I was rocked to the core yesterday, when word came that my friend had passed away.  I knew it was coming, but those words of his death from prostate cancer made my heart ache.

It happens every time I hear of another diagnosis too.  A friend in the neighborhood just had a mastectomy.  Another young woman,  3 thousand miles away is dealing with late effects of breast cancer treatment.  I just heard from a Mom who lost her young son two months ago to lung cancer.  She is just now starting to feel what she describes as her new normal.  She explains it as a feeling of peace that has come over her and it's allowed her to begin to get her strength back.    And the list goes on and on.

We're all trying to cope with cancer.

Even those of us who are years down the road from our loss: we're still trying to mend.

Hearts are fragile.  They work much better when they're full of love and hope.

Cancer makes them skip a beat and that's when they break.

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There is no sense to this day.

Read Ned's post and you feel the pain.  He calls it rage.  We all have our own words for it.

My word today is loss.  I lost a dear old friend to cancer today.

I'm remembering forty years of friendship.

I don't want to think about the last few weeks when his cancer caused him pain and discomfort, only to let him know that it was spreading and there was no further treatment available.  There was palliative care and finally hospice and now peace.

There is no sense to this day.

 

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Cancer patients face so many battles as they go through treatment.

There's chemo brain and neuropathy and nausea to name some of the common problems.

One of the best parts of improving cancer care over the last few years is that cancer medicine has recognized that it's just not about the medicine:  it's about the side effects of the medicine that need to be treated too.  And to take that a step further, oncologists and oncology nurses have come around to understanding that it's not always another medicine, that can help a patient get over a serious side effect.

I remember when Leroy was going through chemo, he never got really sick from the cocktail, but he did feel like he had a bad case of the flu a few days following treatment.  I was driving to work one morning, and a radio show host was talking to an oncology nurse about cancer care.  Coincidence or not, she mentioned how in her infusion room, she had packages of  spearmint gum  everywhere because it helped her patients fight off the nausea.  BINGO! I called Leroy to tell him and from that day forward, we had packs of gum in the car, in the kitchen, all over the house.  It worked.  Simple but effective...what else could you ask for?

I called a friend to check on his wife who has gone through some very difficult breast cancer treatment.  She's been N-E-D for a while and there's nothing better than that, but she's had some long, lingering late effects from her meds.

Her doctors have tried alternative medications, thinking she just can't tolerate the standard care but nothing seems to be working.

On a suggestion, she's about to try something that sounds so far-fetched, it makes spearmint gum sound scientific:  SOAP

It seems according to some cancer patients and others who suffer from serious leg cramps brought on from medications, a bar of "Ivory" soap at the foot of the bed stops the leg cramps.  Is there a medical explanation for this?  Not to my knowledge.

I "Googled" it and sure enough, it's there.

So, her husband is planning on stopping by the drug store on the way home tonight to pick-up some soap.

I am so full of hope that this works for her.  I know we need the big time cancer meds to fight this beast, but how great is it to know that a piece of gum or a bar of soap can give cancer pause?

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Hats off…

Hats and scarves and jackets...Oh MY!!!

It got to the point where I couldn't stand to open the winter coat closet doors.  How did it get that way?

Sleeves reaching out, one on top of the other.  Big, bulky all weather jackets that seemed to grow in the night.

Scarves and hats look like they've multiplied by ten.

Then I realized so many of these cold weather items have been all over the world: probably to more places than half the people who live on my street.

I see the big orange parka Leroy wore to Desert Storm.  There's his extra heavy blue Gore-Tex coat that kept him warm in Kosovo.  The hats have been to  Afghanistan, Iraq, Iran, Rwanda and the list goes on.

There were a few of these winter items that could and should be used by others, unable to provide for themselves.

So, I spent the day separating the things I could not part with and the things I could.

Tonight, I hope there's a big guy out there who feels a little bit better about facing Winter's chill.

He'll never know how far that garment traveled, it's history, or that the man who once wore it would be so pleased to know it's not hanging in the closet any more.

 

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REthinking Grief

So many pieces of treating cancer are changing.

When the 'War on Cancer' was declared so many years ago, medicine really wasn't ready for the battle.  War means battle and battle means weapons and there were hardly any weapons to fight the disease.  Chemotherapy might have sounded like a big, bad treatment that would cause cancer cells to fall dead in their tracks, but early on, it really wasn't specific to any one cancer and really didn't do the job.  It was toxic and dangerous and even to this day, leaves us asking our doctors, "What else have you got?"

Thankfully medicine does offer better choices now in cancer world: research has expanded treatment options and clinical trials provide great results for others.

What about those of us who lost our loved ones to cancer?  Has medicine learned new ways to treat those grieving the loss?  I know when Leroy died, my grief was overwhelming.  Friends, family and even professionals told me there would be grieving  steps to go through and I would manage those steps just like so many others before me.

NOT exactly.

Treating grief, just like treating pain in cancer world has been lost between the pages of the patient's medical file.  Both are just as important as treating the cancer itself.

Patrick O'Malley, a psychotherapist in Fort Worth, Texas wrote about "Getting Grief Right" in the 'New York Times' last Sunday.  He basically says surrender to it.  It's the only way to begin to heal.

O'Malley doesn't abide by the standard stages of grief, but instead see's three chapters of loss.  "Chapter 1 has to do with attachment: the strength of the bond with the person who has been lost." He says "the size of their grief corresponds to the depth of their love."

"Chapter 2 is the death event itself: This is often the moment when the person experiencing the loss begins to question his/her sanity, particularly when the death is premature and traumatic."

"Chapter 3 is the long road that begins after the last casserole dish is picked up--when the outside world stops grieving with you."

The last chapter is the hardest to face.

But,  it's the time to realize there is no time table for grief.

So along with the new face of cancer treatment should come a new way to counsel those left behind to mourn.  They become 'patients of grief' and they need to know it's OK to feel that way for as long as it takes to heal.  It's time to RE-think what it means to grieve.

 

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The happy news that there was a healthy baby girl born to a wonderful couple was all I needed to hear a couple of days ago.  It brought a smile to my face when the text arrived, accompanied by a handful of pictures of a scrunched-up little face peeking out of a tightly swaddled blanket.  This husband and wife have traveled the world making a difference.  They have put their lives on the line many times, wearing a military uniform, representing the USA, fighting for our freedoms.

The new Dad met Leroy when he was a part of the 3rd Infantry Division known as the "Tip of the Spear" when we went to war in Iraq.  Fatherhood was the farthest thing from his mind in those days.  Survival and watching over the "Nightline" crew were two of his priorities then.  He and Leroy bonded like brothers during that time together.

Since then, this soldier has risen in the ranks of the Army and he's continued to expand his mind too.  And so it was that after he texted me about the birth of his daughter, he sent another text beginning with the words "Oh, I just remembered....."

He went on to say, in one of his classes at school, as he was recalling his time in Iraq, another student approached him and introduced himself, followed by "You must know Leroy Sievers?'

This man went on to explain that he was from Kosovo and had met Leroy when "Nightline" was there covering the war.  He had "helped out" in some way.

That was a coincidence in itself but then he continued with his story.  Leroy had a hand in sponsoring him and helped expedite his move to the U.S.. The text went on to say this man has worked very hard since then to make something of his life here in this country.  He works at the U.S. Department of Defense.

"He wanted to send his thanks."  Those were the last words in the message.

Imagine that.  All these years and Leroy's legacy continues to grow.

The man had quite a reach....

 

 

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