To The Big Guy

An amazing life and legacy...Remembering Leroy

An amazing life and legacy…Remembering Leroy

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I didn’t know it,  but this was the night before…

Death had come knocking a few times and he had always been able to push it away.  His doctors had rallied and pulled him out of bad situations.  He’d had the strength and the will to go on.  There was so much to live for and death would have to wait.

This time was different.  Hospice, death’s facilitator, was a part of our team now and all those medicines to ease the pain and promote sleep had been dispensed with a plan in mind.  It would allow death the space it needed for one final visit.

Nine years ago I sat on the edge of Leroy’s hospital bed with old pictures in-hand and old stories in-mind about a couple of young journalists who fell in love with news, sports and each other.  It would be a night of remembering.  I’ll never know why I chose that night to recall some of the craziest, funniest, and serious adventures we had shared together and apart, but I can tell you this, I chose the perfect night.

Maybe those hours of storytelling helped me more than it did him.  He never really responded, but I know he heard me.

I wouldn’t get another night.  This was the night before.

 

 

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She lived with cancer for 7 years. It was a real struggle some of the time, when the disease was fully present in her body and her treatment options were few.  That’s because she didn’t live here in the United States.  She lived in Kathmandu.  That’s in Nepal.

Kathmandu is approximately 7, 907 miles away from the United States.  It’s a million miles away from cutting edge cancer care.  The reason I know that is because this cancer warrior’s sister is a friend of mine and for the past 7 years I’ve lived this cancer treatment nightmare with my friend.  She would give me updates on her sister’s condition and come with a list of terms her doctor would use but never explain.  For the most part, I could give her a pretty description of what this doctor was saying and then she’d make the call to Kathmandu and so it went.

More troubling than serving as  a cancer dictionary and encyclopedia for this family, was the fact that I learned there  really isn’t any health insurance in Nepal.  The same goes for New Delhi in India, where this woman would travel to see a cancer specialist when they could afford it.  Health care equals how many dollars you can put down on the table, or under it.

They even took a three day train ride to get a second opinion from a doctor in a remote part of Nepal.  Once the train stopped, this patient and her husband, found a taxi to drive them to the hospital.  That took another hour! With cash in hand, they met the specialist who said she was getting the proper care. A quick exam and then turn around, taxi back to the train station for the three days ride home.

Seven years, this family did what they needed to do to give their loved one a fighting chance.  She enjoyed remissions along the way.  Those were the good weeks.  Most of the years were spent pushing back the cancer with treatments cancer centers in the U.S. haven’t used in a very long time.  They weren’t the wrong treatments, just not the latest treatments that have shown so much more success in killing cancer.

My friend tried to get her sister to come here for treatment, but home is home.  She was afraid to leave and not be able to go home again.

She’s at peace now.  She was 52 years old.

We all know how hard it is to live in cancer world. It’s especially hard in a far away land.

 

 

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The Wave

“Four fingers extended upward from the steering wheel, but may be modified to suit circumstances and locally accepted etiquette.” What is it? Why it’s the Urban Dictionary’s description of the “JEEP WAVE.”

When Wrangler owners passed each other on the road or at an intersection, they’d exchange this wave.  I know this because there was a time at this house that a bright orange Jeep took up residence here.

How we loved our Jeep.  Leroy bought it in California when he was doing a visiting professorship at USC.  He drove it across the country on his way home and who knows how many secret waves were shared in Arizona, New Mexico, Oklahoma and so on.

9 years ago on this final day of July, I accepted a check and watched as the Jeep left our front yard for the last time.

Leroy was too sick to watch from the window.  He was too sad too.  His cancer had taken so much from him that driving was no longer a part of his world.  It was the ultimate insult from this disease that been relentless in its pursuit of his active life.

That Jeep brought us so much joy.  We would jump in and rumble down the road and literally feel the years fall away.  We were kids again on an adventure.  And if we were lucky enough to pass another Wrangler I would watch Leroy’s four fingers rise off the steering wheel and he would laugh his big laugh, when the other Wrangler driver would return ‘the wave.’

So cool.

Such a wonderful memory.

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Took a walk down memory lane today at Hopkins.  Walked down the halls of infusion; chemo land to be specific. There are not many good things to remember about chemotherapy.  Hands-down the best part of that time was our friendship with our chemo nurse.  She was and still is a great pal.  She got us through the beginning, middle and end of each session.  Thank goodness she was a sports nut like me and actually Leroy too.  On the toughest days, talking sports got us up and over some nasty hurdles of cancer and chemotherapy.

Things have changed in chemo land.  There was always room for improvement, but hard to implement because of logistics and sometimes things just stay the same because they do; no reason, no excuses.

Clearly the nurses and their supervisors have cleared the way for patients to receive a better experience, one that provides easier procedures along with faster treatment times and more efficient care.

There’s really no more one nurse to one patient.  Instead the ‘pod’ where the patient goes for chemo has a team of nurses familiar with all patients assigned to that specific ‘pod.’  A patient to multiple super nurses: I like that math.

There are ‘safety zones’ where a patient’s chemo is double checked before treatment.  There is nothing more important that patient safety.

Some patients require special needs.  Some patients circumstances mean more attention is insisted upon, so new assigned support teams are at the ready to fill those needs.

Phone teams are in place now to make contact ahead of the chemo appointment to check on the patients’ condition, and just to remind them they are expected for treatment.  That way any problems can be anticipated before the patient walks in the door.  Even the chemotherapy can be mixed and ready when the patient arrives at infusion.  Thinking back in time and remembering the delays in treatment only because the pharmacy was backed up, as we sat there watching the clock.

Supplies are within an arms reach, there are new and important protective gear orders for the nurses in case of any spills.  Safety precautions for those we rely on to provide the care is critical too.

The world of chemo therapy and how it’s dispensed has moved forward, giving the patient a safer, faster, more secure approach to treatment.

Cancer world is growing up in so many ways.

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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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