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Navigating the Middle

through adolescents, menopause, aging parents & other flying debris

Month

August 2016

Day +14: Returning Home

I am so happy to be home.

There is no better place for me to recover the next 100 days of my journey. I have my family in one place; can sleep in my own bed; and don’t have the constant interruptions of nurses and techs throughout the night. My taste buds are returning to normal, and although I am fatigued, I know that this too shall pass.

Like a fading memory, I recall being pushed in a wheelchair, through the double doors of the negative pressured BMT (bone marrow transplant) Unit and not looking back. It was the first time I’d been beyond those doors since Day -5 of my hospitalization.

So, for the next 100 days, I have the following marching orders: NO public transportation, restaurants, alcohol, sick people, and crowds.YES to covering my mouth with a mask; using hand washing/sanitizing; and to contacting the transplant help line if I develop one of any number of symptoms. (Kinda sounds like dealing with a toddler, more “NO, you can’t” than “YES, you cans”.)

It is a far cry from my early days in the hospital when I questioned my commitment to receiving the transplant. I am light years away from barely being able to raise my head from the pillow or eat solid food. I can get out of bed, everyday, with my own strength. And I go to bed knowing, that while I might not get uninterrupted sleep, at least I won’t be dragging around Cinnamon – my infusion pole.

I’m finally home, trying to shake the memory of the entire 22-day hospital stay. I assumed the past three weeks would be automatically erased at the sight of my family and being home. Instead, it’s a process, one that I expect will become easier with each passing day.

 

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Day +12: Early Release?

Time in the hospital has felt more like being in prison. It started when I got jail-house tatts before being locked down and confined to my cell. I’ve donned the uniform (AKA the peek-a-butt hospital gown); and had my three squares a day. By default, I’ve joined the bald head gang, housed here on the BMT Unit cell block.

Workouts include walks around the yard (i.e., the ward) or trips to the relaxation room which offers a computer, reading materials, a treadmill, stationary bike, and a set of stairs. Sorry,  I don’t have the prison body to show for it.

Incarceration comes with forced visits from techs,  nurses, integrated medicine experts, a nutritionist, and doctors from different disciplines.

Nearly three weeks into this, I still haven’t quite figured out who the warden is. But I think it’s Dr. K. Yet, for some reason, he seems reluctant to claim the title. Maybe it’s because I’ve threatened to cut of my hospital arm bands and escape “SHAWSHANK” style, which turns out, may not be necessary after all.

It looks like I will be getting out ahead of the projected 25-35 schedule. I’m calling it an early release for good behavior. When I find out my release date, I’ll share it with you. You’ve been so loving to follow my progress.

In the meantime, I thought I’d share a few pictures from inside my cell.

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*The use of neither coffee nor whiskey is responsible for the securing of my early release.

Day +9: Just Beyond Ordinary

I began this blog three days ago, when I felt well enough to write. Unfortunately chemo-brain is real. And the lack of sleep, nausea and pain don’t fuel the creative process.

I could tell you all about my burning feet and palms, diarrhea, and trouble swallowing food. I could tell you it’s not pretty; in fact, it’s ugly. Or I could chose to focus on being thankful. Extended family, church family, friends, and neighbors have all stepped up to take care of me and my family. Jeff, my girlfriend Kelly, my sister Stephanie and my mom have all taken turns playing nurse and spending nights in the hospital. I call it a slumber party, which when I get my way, is mostly slumber.

I’ve even sparked a social life. My neighbors, T. – whom I fondly refer to as my twin (having received our transplants on the same day); and D. – who received her new cells Wednesday are both from the Maryland-Virginia area, have children, and had related donors. It’s good having them around. I would not want to do this alone.

Yet deep down, I’m somewhat envious of them. I cannot help wonder if having a related donor makes a difference. Unfortunately it was not a real option for me. I can only stress that the path to recovery following a stem cell transplant is no sprint. No cancer journey ever is. My marathon is more like a blinding race through an ever-changing topography that can create a ripple of panic through the spine of my medical team. Anything just beyond ordinary seems to solicit a need for more tests. The test du jour is a CT scan of my abdomen, which I have politely declined…at least for the time being.

Today, I will determine what’s ordinary and what isn’t.

Days +1, +2: Forever Changed

It’s been a few days since I’ve had the strength (or desire) to write. My hopes to blog throughout this process were outrageously, overly inflated. Words like “goal” and “will-power” simply possessed no power.

Here’s the recap:

Wednesday, August 3 was Day 0. The stem cells arrived, carried in a cooler by medical personnel.

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After checking paperwork and confirming the puffy, pallid-looking patient laying in front of them matched the proper name, date of birth, and medical record number…

 

…the donor cells were hung. Gravity stood between me and my new stem cells. Jeff and I prayed. The nurse stayed. The bag emptied in about 20 minutes.

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There was no reaction; no gagging or fits. It was, as it had been described to me, rather anti-climactic. I felt well enough to get out of bed and take a couple of laps around the ward that evening.

That was Wednesday, Day 0.

Since then, things haven’t gone nearly so well. BUT, today is Day +2, and I am able to write. Prayerfully, this is the turnaround I’ve been anticipating. Doctors have assured me that my symptoms are a result of the preconditioning regiment, of which they do not seem to be surprised.

I, on the other hand, have experienced many surprises. Given my history of cancer, chemo and radiation, I’d thought I’d seen it all. But this IS different. And more than anything, I am convinced that no matter what happens next or what has already taken place, my life has forever changed.

 

 

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