HOPE

A long time ago, when I was new to cancer world, the word HOPE had only one meaning and it mirrored what my little Webster’s dictionary also said: “trust that what is wanted will happen.”  Even the verb “want and expect” worked for me.  It took a few years and many highs and lows of cancer’s relentless attack for me to come to understand that Webster clearly hadn’t been a part of a cancer journey.

And so it was that just the other day in a conversation with a neighbor that I learned both her aging parents are in poor health.  Her mother is suffering terribly through the final stages of cancer.  To make matters worse they live in a country where health care is not care at all, so her Dad is the main care giver.  The grown children take turns helping out but even then, it’s far from a stable situation.   Her mom is losing her battle with cancer.

My neighbor said she was so hopeful when her mom was first diagnosed. She responded to treatment early-on and life was manageable. That has changed now and the disease has advanced at a rapid pace.  There won’t be any more treatment and palliative care has not reached this part of the world yet.

What’s worse is the hope that was once so obvious in the eyes of this daughter has faded.  She’s at a loss over how to feel.

So I shared with her what a wise clergy woman once told me about hope and cancer and how hope shifts as cancer moves to its end-stage.  We never really stop hoping, she told me, but it’s what we hope for that changes. In the beginning there’s the hope for a cure, or at least a remission.  If that doesn’t happen, then we hope for quality of life and some quantity too.  But in the end, we hope for comfort.  We hope for peace.  We hope for resting in peace.

Then I guess we can reach back to Webster’s definition and “trust that what is wanted will happen.”

 

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They huddle together at the lunch tables and it seems everyone talks at the same time.  It’s really hard to hear what they’re saying, but every few seconds you can catch a medical phrase or a word and you just know they are talking about what they saw in morning sessions as their first days of being “doctors” begin to unfold.

Yes, it’s July and that means the newbies, the fresh new faces of medicine have taken up residence at the hospital.  I was sitting at a table just a few feet away from two different groups of young doctors and nurses.  It was so nice to watch the intensity of these sharp young minds listening, taking notes, and talking shop.

I look at them and think, in that group is some one who will break the code to cancer.  They don’t know it yet, but they will discover a new way to spark the immune system or find a way to map the cancer gene that will reveal a pathway to its destruction.

I have the faith that one of these fresh new faces will one day become the face associated with ending the curse that is cancer.

We can only HOPE.

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Grief, if you’ve ever felt it, is over-powering.

What to do about it has been a source of discussion in grief counseling for years.  When Leroy died, I would experience waves of grief.  The sadness would come over me at the oddest times; I’d be sitting on the couch watching TV or driving in the car when something on the radio would trigger a thunderstorm of tears.  The grief would pour out of me.  Grief counselors would try to explain how the process works and how long this would take to pass, and I would listen, hoping to hear something that would guide me through this awful time.

Walking helped the most.

I was a lucky girl because of a friend had experienced a tragic loss of her own shortly before Leroy died.  We walked together and talked together, helping each other along the way.  The walking never stopped.  We have pounded the dirt at the C and O Canal for years now, talking through our grief, her breast cancer scare, my adjusting to being a widow, and just plain old daily life.  Walking is our safety net.

Amanda Loudin, a Washington Post journalist, writes about how “Exercise helps when you need it most” in today’s paper.  Experts like Allison Gilbert, a grief expert and author of “Passed and Present” says that what grief takes away-energy, joy, focus- exercise can give back.

I’m living proof of this phenomenon. I’m sure there’s a chemical reason exercise works, and certainly a psychological reason too and I appreciate both, but I’m most grateful for how it just simply pulled me out of some of the worst times of my life.

Grief is part of loss.  It comes with the territory.  But there’s no reason not to step up and step out of its reach before the damage can’t be reversed.

Anyone for a walk?

 

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“I am a warrior and it is the way of a warrior to fight superior odds.”  Wildlife activist, Paul Watson said it and little did he know those words would apply to a major breakthrough that’s about to happen in cancer treatment.

Gene therapy for certain cancers is about to receive FDA approval.

The warriors in this major shift in treatment are the T cells in our own individual immune systems.  These are the cells capable of going after a tumor and killing it.  To say this has been a long, hard battle in the lab and research centers to reach this place, is an understatement.

Scientists are calling this a “living drug.”  This gene therapy or technique must be created for each patient.  Their cells are removed, frozen and shipped to a Novartis plant, the drug company positioned to become the first to genetically alter these cells.  Those cells are thawed, processed, frozen again and shipped back to the treatment center where the patient is waiting to go to war against their cancer.  In this case,  a specific type of leukemia will be the first line of attack.

These re-engineered CAR T cells have been boosted or ‘armed’ with the weapons to recognize and attack the cancer resulting in long remissions and in some cases cures.

Yes, there are side effects.  Some are very strong and some patients have spent lengthy stays in the ICU.

Because this is a very complex treatment, Novartis is limiting its use to a limited number of medical centers where staff has been trained and approved to administer it.

Dr. Carl H. June, from the University of Pennsylvania, whose team developed the procedure, calls these T cells, “serial killers.”  A single supercharged cell can destroy up to a hundred-thousand cancer cells.

That’s a warrior to be reckoned with, for sure.

The war is shifting and the warriors fighting cancer are finding new ways to advance and destroy.

Music to my ears.

 

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Some days, the news is GOOD in cancer world.

To follow up on yesterday’s post, that ‘sigh’ you heard this afternoon came from deep inside the heart and mind of my friend who heard good words from her radiologist.  “Every thing looks good.  Unless something comes up, you are cleared from my service.”

HOORAY!!!!

How many of us have longed to hear just that?  It never happened in this household, so I can only imagine the joy and relief that comes with those words.

It was a Winter of difficult chemo and radiation and now a Summer of repair.

Good news in cancer world is a thing of beauty.

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She feels fine.  She’s back at the gym.  She’s a spinning fanatic and she’s back lifting light weights to regain the muscle tone she lost while she was in treatment.  Chemotherapy and radiation interrupt the normal pace of life and this cancer patient tried very hard to keep-up her gym routine, but there were days her treatment over ruled her plans.

All of those drugs and ‘rads’ are behind her now.  She’s back at the pool swimming her laps and for the most part, feeling pretty good.  I noticed yesterday, she wasn’t quite herself.  When I asked if everything was “OK” she nodded yes but I still wasn’t sold.  Then today when she said she wouldn’t be there to swim tomorrow it dawned on me, it’s check-up day.

Tomorrow is check-up day.  But for the last few days, the anticipation of check-up day has been weighing heavily on her mind.

The “what-if” they find something thoughts begin to build long before the car pulls into the parking lot.  So much anticipation of bad news once you become a cancer patient is a part of belonging to cancer world.  The words “You’ve got cancer” comes with a life long membership to that anxiety.

Check-up days are so important, but they are so stress filled.  Hopefully, it will be just another day and then it’s back in the pool….moving on, one lap at a time.

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Bad things should not happen to good people and tonight I am writing about one of the best who is facing hip replacement surgery.  I’m very aware that getting a new hip isn’t the worst thing in the world, but it hurts and it takes a while to rehab from it and this person shouldn’t have to go through any of that because she’s just the best at what she does for a living.

She’s an oncology nurse.

She was Leroy’s oncology nurse.  I’m not sure what I would have done without her during our journey through cancer world.  She allowed me to lean on her when times were rough.  She just happens to be a great sports fan, so we were able to talk sports instead of cancer when cancer was taking over our lives.  She could explain even the most sensitive, confusing parts of treatment in a way that was so easy to understand.  She is and was the best for two control freak journalists who needed details and suggestions and patience at a time in their lives when the world was upside down.

And did I mention that this wonderful woman never stops moving?  I’ll never forget the first day we met her.  She was whirling around the infusion room and barely had time to say “Hello” and introduce herself.  I don’t know how many patients she had that day when we were just visiting, but every one of them got such expert care and consideration.  We were so lucky she would be ours; not a word you use in a chemo room full of cancer patients.

Her bad hip really hasn’t slowed her down much.  She came speeding across the cancer center lobby the other day and if it hadn’t been for her limp, I would have thought it was just her flying across the room for a quick “Hi” and that would be that.  But the limp was extreme and when she told me about her plans I was immediately worried.  She, of course, set me straight by saying it will be fine. She’s got a great surgeon and  now these new techniques where parts are replaced are so simple, and the rehab is much less stressful.

I could hear her reassuring words and was wondering if they were meant for me, like they were many years ago during Leroy’s treatment, or were they for her, the patient this time around? Regardless, she’s going to go through a rough patch.  And for that I am not happy.

That surgeon, and those nurses who will be in that O-R in a few days, replacing that bad hip better do the best work of their professional lives. This is one very special angel patient scheduled for their table.  And that hip has miles to go before it rests.

 

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These are professional people giving back.  People who have worked hard to build a career and then decided they needed more; they needed to help others, not as savvy, build a life.  So they counsel, they guide, they offer life skills.  Sometimes, these people who need to start over, don’t even have the proper clothing to get them in the front door for an interview.

So these volunteers take their understudies to a special “store” where clothing and shoes have been donated and it’s a shopping day to remember.  These are not ‘hand-me-downs’ from someone who has cleaned out a closet or two and is getting rid of clothes that have been worn to death.  No, these are gently used, fashionable suits, any man would be comfortable wearing for an interview.  How do I know?

I know because I’m familiar with six of those suits.  They were hanging in the closet at this house when I decided someone needed them to fit this exact occasion.  Leroy’s suits were a topic of much discussion when he bought them originally.  One by one, he added them to a wardrobe that consisted of mostly casual wear.  In the field, Leroy wore what he called his ‘war clothes.’  Shirts that would blend into a crowd, nothing with a pattern, nothing that required a coat or tie.  War clothes are basic, bland shirts and jeans for the most part.  His regular work clothes were slacks and shirts with sleeves rolled-up and sometimes a tie.  The suits were for occasions that called for high-end meetings, evening events and really special times.  Leroy was not a big suit guy.  He was a “big” guy and filled out a suit to be sure, but it was a real show of respect if he was wearing a suit to meet with you!

So it was with respect for him and for the reasons this special store exists, that I donated Leroy’s beautifully tailored suits.  When I heard these folks talking about how they are giving back and how much fun it is for them to see these hopeful men walk out of a dressing room wearing a beautiful suit, in preparation for an upcoming interview, I could only imagine that I knew where that suit had come from and even more important, where it was going.

 

 

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The scene: The bank.

The scene setting: A very long line and just one teller, because banks don’t want you to have a personal experience with bank people any more.  The bank used to be one of the places a person could go year after year and really have a relationship with a banker.  You knew their name and they knew you and what your banking preferences were too.  Now, they want you to use the machines.  Withdrawals and deposits are a waste of time to bank people now, so the longer the line, the better.

The scene changer:  Except for the person who was being helped, the rest of us were standing and waiting and waiting some more.  A bank person rounded the corner to observe the long line and decided I would be the one he’d usher out the door to “teach” me how to use the machine.  (I know how to use the machine.)  I calmly said I was fine waiting although I was surprised they had only one teller working.  He launched into his prepared speech about how easy it is to use the machine and persisted that I follow him outside and I did, only to get lectured on how these machines were meant to help all banking customers, even those of us who are used to banking “the old fashioned way.”

The scene closer:  I took that to mean the “older” customers.  So I responded by saying I thought having just one teller available was not good planning on the bank’s part.  He quickly came at me with an explanation: “One of our employees has had a loss in her family.  Are you suggesting that we shouldn’t have given her time off to grieve for her loved one?”

This is where I don’t have to tell you,  that I could have launched into quite a strong response.  Instead, I simply turned away to use the machine to avoid eye contact.  I was just about to begin the transaction when the screen lit-up with a message that said “Out of order, please see the teller inside.”

I walked back into the bank.

You never know who you’re talking to….so don’t EVER go there.

 

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As bad as cancer is, and it is bad, there are ‘pieces’ of it that bring people together.  I mean really bring people together, years after the worst of cancer has happened.

In my experience, I watched Leroy’s circle of friends grow and surround him with love and kindness and caring.  I watched his pals lift him up with so much love it would leave me in tears. And he cared for them so much that at the end of his life, he couldn’t say good-bye.  It was just too painful for him to face a farewell to the group.  We talked about it many times, but he wanted to remember them in the ‘present,’ with “Hello’s” and not “Good-bye’s.”

So fast forward almost 9 years now, and having just gone through his birthday and our anniversary, you can imagine my memory bank is overflowing at the moment.  It’s been an emotional few days and it is exhausting to go through it. But the best part is, I haven’t gone through it alone.  Those great friends have lifted me up too.  All these years later, so many kind words, emails, pictures, events, all played out over the last few days in celebration of Leroy’s life.  He had a VERY good birthday and we had a VERY nice anniversary!

These are the ‘pieces of cancer’ I’m talking about; the friends who stick with you, year after year.  The friends who ‘get-it’ and realize you never stop remembering and you will always miss your person.

On one hand, being the care-giver and the one tasked to find a way to reinvent your life after cancer ends your dreams, is something you have to figure out on your own…period.  But, one the other hand, you have those ‘pieces’ to lean on, to rely on when you’re feeling a little weak in the knees.

I doubt cancer even knows it creates this support team because it’s so busy trying to destroy a perfectly good life.  But I’m here to tell you, something very positive comes from something so awful.  I couldn’t imagine life without those ‘pieces.’

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