All her life she's been a care giver.

She is one of those special people we talk about using words like "angel" to describe her special qualities.

She's the one who has the patience to hold you in her arms when the scan comes back and it reads "metastatic."  She's the one who holds your hand when the liquid flowing through the tube and into your vein stings and burns like a hot poker and she whispers "Deep breath, it will go away soon."

She checks on you at home, even though your next appointment is three weeks away and the sound of her voice on the phone has a calming, soothing voice that can't be matched.

So how does this happen, that now she's heard the words "You have cancer."

She's the one who will need the care now and that's just not the way it should be is it?

Once again, this disease has no boundaries.

 

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This a thank you note.

There are some people who do their jobs so well, they some times seem invisible.  They create a smooth, all parts moving in sync environment.  We some times don't realize how hard it is to make it look so easy.

One of those "invisible" people is moving on from her place on the second floor chemo infusion location up at Hopkins.

Even before I knew her, I knew her. As a care giver walking into that room 9 years ago when Leroy and I were new to Hopkins, we needed to feel taken care of and we needed to feel like the best people in cancer world were there for us.  The chemo room, a place we would become very familiar with, was one of those places.  On our first day of treatment, we could tell the oncology nurses were special.  Our nurse not only made us feel 'fear-free' but she wrapped her arms around us and gave us a feeling of security and strength that we would call on for the next 3 years.

That's the way the nurses were up there  and I came to realize it all trickled down from the top.

Shortly after Leroy died, I approached Hopkins with the idea of making a video presentation on chemotherapy that would give patients and their care givers the knowledge they would need to understand this very important piece of cancer treatment.  I met with Kitty Violette to begin the planning of the video and I quickly learned why the chemo room worked as efficiently as it did: Kitty was leading the team.

She got the importance of running a tight ship.  Chemo is nothing to mess around with, for sure, but along with the business side of that room, there was a personal, wonderful heart beat of caring and concern for each and every person who filled a chair or bed there.

We made our video, one that every chemo patient watches before they begin their journey down that part of the cancer road.  Kitty and I worked through the script and plotted our shooting schedule that required her to bend and shape schedules to meet our demands.  She picked up a little of what it takes to be in my business and I in hers'....and we became friends, as over the years, I've called on her for other requests as other video demands have popped up.

She's a pro....she leaves big shoes to fill.....I thank her for allowing me to walk beside her on so many occasions in the hopes of making the next cancer patients' path a little easier.

Kitty, you leave an indelible mark...Thank YOU

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I appreciate the kind words so much, but I truly believe we all do what we can to "lift" once we've been touched by cancer.

I looked at the man with the stack of books and thought back to my days when I carried the weight of cancer in my heart.  It felt so heavy some days, it took my breath away.  Any one who would have taken the time to say a few words to me would have provided a short pause, just long enough to remind myself of the world outside cancer.  I hope our short conversation did just that.

I wish there was a place at the Cancer Center where care givers could go to pass through an invisible screen, where their worries would be left at the door and warm smiles would greet them with short conversations about anything but cancer.  A place where a cool drink, a little music, a friendly face and a warm handshake would refresh those who work so hard to support their loved ones.  This would allow them a few minutes just to be themselves.

That's what we miss the most as we care and lift our cancer patients.  We miss ourselves: who we were before our lives changed.

So, if we can help another care giver with just a brief "hello," we're really helping to remind them of a better time.

A time before cancer.

 

 

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His body language screamed "I'm tired."

His eyes were swollen and red and he looked sad.

These were all signs of a caregiver who was going through a rough time.

In his arms he clutched a stack of books and a few notebooks too.  He held them tightly so they wouldn't drop on the elevator floor.

It was just the two of us so I said, "Looks like you'll be doing a lot of reading today?"  He glanced my way and said, "OH, I get so tired just sitting by the bed and it's so hard to read just one book, so I have a variety with me today."  "I'm not sure I can even read today."

I told him that I understood exactly what he was saying.  The days are long at the cancer center, especially when you're sitting by the bed and can't really do much to help, but I told him it was important to be there, to show support and love.

He shook his head in agreement, rearranging the books in his arms as he shuffled out of the elevator.  He turned around and looked at me, smiled and said "I hope your day will be better than mine." And he was gone.

A stack of books and a tired man facing another day of care giving in cancer world.

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It's like winning the lottery isn't it?

You've heard the words, "YOU have cancer."  Your world is shattered.  Everything you thought was normal, steady, even routine, changes in an instant.  None of those things apply to your life any more.

You're a cancer patient now.  You live in cancer world.  Words like chemotherapy, radiation, scans, clinical trials: they all become a part of your new vocabulary.

You have a care giver now, some one who used to be your partner, your spouse.

It's a different life.

So, you go through treatment and you're lucky enough to walk away from all of it with the letters, N-E-D written on your medical chart.  No more cancer.  No evidence of disease.  Your medical team says, "See you in 3 months," and then it's maybe 6 months, and if all continues to go well, no check-up for a year.  It's all good.

It's like winning the lottery isn't it?  So, how many times have you heard people say, if they win the lottery they would change their lives?  They would appreciate life more and help people who needed a hand?  They would give some of their winnings to needy causes instead of buying cars and houses and gaudy jewelry.  If the lottery changed them, it would change them in a good way.

Now, put those same ideas into the cancer box.  Surviving cancer is a huge accomplishment.  You are a changed person on so many levels.  You appreciate life more and how many times during treatment did you whisper to yourself in the dark of night, "If I get through this, I'll be a better person?"  "I'll help other cancer patients who aren't as lucky.  I'll reach out and do what I can to make their lives a little easier?"

It is like winning the lottery, isn't it?  Maybe even more important because the lessons learned help others.

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I love it when some one I know has a birthday and is living in cancer world.  Birthdays are the best...

They carry an extra helping of "Happy" when the cancer is far away and no where to be found and the biggest decision to be made is where to go to dinner to celebrate the birthday.

That's the scenario for a friend who has been successfully battling her cancer for a long time now.  She's been through so many conventional treatments and then her doctor made the bold move to place her in various clinical trials.  These trials have given her new life.

She has gone through genetic testing and she meets the qualifications needed for these specific trials.  They are matched to her cancer and  they have taken a big bite out of the beast.  She's on what she calls a "friendly" chemo at the moment while she and her medical team look at new trials that give her a new jolt of hope.

It's a different life than what she expected; no one thinks they'll be faced with making decisions on clinical trials, but she's adjusted her thinking and lives each day with hope and a great attitude.

And she has a birthday to celebrate and a dinner to mark the occasion...Happy Birthday Suzanne....and many more!

 

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We miss them around the Holidays.  We miss them on our very own special calendar dates.  Anniversaries and Birthdays don't feel the same without them being here, do they?

We even remember them and miss them on particular dates that marked the progression of their disease.  There were surgeries, the first day of chemotherapy or maybe the day when your doctor said there wasn't any more treatment available.

All important markers of time, but there I was, sitting on the couch last night watching the last episode of "24: Live Another Day' and all I could think of was Leroy really should be here!  He LOVED the show and we were loyal viewers.  He would have loved this season too.  Some of the same great characters, good writing and the usual over the top, graphic violence and crazy story line, but so much fun to watch.

It was appointment TV for us.  And there I was, watching it alone and missing him just like I do on those really important dates.

I guess it's the sharing I miss.  We didn't always see things the same, but we were a united front with this kind of stuff.

The healing part of this life experience, includes the 'missing' part: It's one of the hardest parts too.

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Remembering "them" is so important.  Al reflected on that, recalling a great line by Mitch Albon.

One of my favorites of his is "Have you ever lost someone you love and wanted one more conversation, one more chance to make up for the time when you thought they would be here forever?" "If so, then you know you can go your whole life collecting days, and none will outweigh the one you wish you had back."

No matter how many times we heard the word terminal or metastatic or stage 4, I always hoped and thought Leroy would beat the beast.  He was the strongest, healthiest guy around.  I don't think I can remember more than a couple of flu's or colds that stopped him for a day or two.  He got so sick down in Nicaragua after eating in a restaurant.  He was down there covering a conflict and when the meal was over, he and his crew walked through the kitchen to leave and there was an open sewer line in the middle of the floor. He knew bad things would happen and they did.  I always packed powdered Gatorade in his bag and he used every packet and still he suffered from such bad food poisoning.  When he got home, ten pounds lighter, the doctor prescribed strong antibiotics and some serious bed rest.  That was probably the sickest he'd ever been before the cancer.

He came in contact with so much bad stuff...his international certificate of vaccination card had three added inserts, plus a cholera vaccine certificate.  Unfortunately, there was no vaccine for cancer.

And as the disease progressed, the days were filled with more things to do.  The pressure to make sure he was comfortable, and as pain free as possible replaced the conversations and card games.  We didn't talk as much and the special words of feelings were lost in the busy time.

24 days after he died I wrote this on the blog: " It was a good old '60's love song.  The kind that took you back to those last perfect days of summer.  When it was over the DJ on the radio said, "It's important to say it in the living time.  So there are no regrets."

The "IT" is "I love you."  Say it in the 'living time.'

How many of us get so wrapped up in the chemo sessions and doctors' appointments and care-giving, that the 'I love you's get lost in the demands of the day?'

What I wouldn't do to say that once more to Leroy- in the 'living time.'

I meant it then and I still mean it now.

One more day...

 

 

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Some might call it the final good-bye but it's far from that.  It's a physical separation, so I guess it's a form of closure, but I'm not sure we really ever say "good-bye."

This is a simple message for you Al, because I know how your heart is trembling, anticipating what tomorrow will bring.  It will bring tears and smiles and every other emotion we humans are lucky enough to hold dear.

It will be a difficult, exhausting day too.

Your family will be by your side and you will have the "lifting" you need to get through the day.

Take it from someone who traveled more than six thousand miles, through TSA check points and many airplanes, to make sure Leroy was at rest in the perfect place of his choosing, this is a day that will mark your life as well as Linda's.

So make it about the two of you.  Before you leave the house, put something in your pocket that was special to the both of you.  Bring her a favorite flower that will keep her company after you leave the family plot.  Most of all, and this helped me a lot, talk to her, Al.  Before the family gathers to say their good-byes, excuse yourself and take some quiet time alone with your loved one.  Everyone will understand and my gosh, after spending a life time together, you certainly have a lot say.

No doubt in my mind, she'll be listening. And that's when you slip your hand inside your pocket and squeeze that special treasure you've brought from home.

Let the stories be told and let the tears flow and from one of those stories laughter will break through and before you know it, smiles and good memories will begin the real healing.

Prayers and strength to you my friend.

 

 

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How do we heal?

If we fall and scrape our knee, our body goes to work and before we know it, we have a scab and the healing process runs its course.

It's not so easy with cancer.  Treatment is far from the Band-Aid and Neosporin in the medicine cabinet.

Surgery, Chemotherapy, Radiation, Clinical Trials; there are so many forms of cancer treatment and none of them are easy.  If the treatment is matched well to the cancer, good things happen.  The cancer dies.  It retreats to places unknown, sometimes to return and cause problems another day and sometimes not.

How does our mind play a role in healing from cancer?

Can we persuade the cancer to turn and run just by thinking it away?  The power of the mind has been researched for years and some experts believe strongly that the mind has the power to override cancer's considerable presence.

In this house, we used the "think positive" approach and most of the time it made for a better day, but facing a metastatic diagnosis tends to creep into the minds crawl spaces when you least expect it.  It's hard to hold on to that healing feeling when scans or test results reveal the disease marching forward and there isn't a powerful thought that can stop it.

Maybe the positive healing idea is meant to lift us until reality hits home.

When hope shifts from the hope of healing to the hope of a pain-free, peaceful death....and then a different power of healing takes over for those left behind.

 

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