Chapter 15: A New Birthday
When you check into the hospital for your transplant, you are actually checking in for one last BIG chemo treatment and then the transplant. I suppose to create a sense of anticipation they call the first day you check in Day -6. Then you count down to Day 0, which is the day of the actual transplant.
Day -6 was mostly tests. Chest X-Ray to ensure I didn’t have pneumonia. A ton of blood cultures to make sure that all my ports and catheters were germ free. I also received two units of red blood cells for anemia brought on by the ICE. That evening I got the first chemical in the BEAM cocktail.
Day -5 to Day -1 were somewhat routine. I would get chemo. My mom and wife would take turns keeping me company. The kids stayed home, as no children under 12 were allowed to visit and we didn’t want Andrew to feel left out (or to inflict a hospital setting on Riley). The women in my life seemed to make it their personal mission to get me to walk. The nurses (did I mention they were amazing?) made it clear that every day I had to take a shower and I had to walk (also brush my teeth and gargle 5 to 10 times a day). If I didn’t walk in the hospital, I wouldn’t walk when I got home. So, I walked. Bambi the pole dancer and I would do our back and forth down the little hallway. 42 paces each way all tracked via a chart taped to my door. By the time I left I made 35 miles according to my pedometer.
Every morning a doctor (I only saw Dr. G once) and fellow would stop in on rounds. They’d look at my mouth for sores, make sure my feet weren’t swollen, tell me everything was going great and leave.
It was also during this time that oxycodone went from my favorite narcotic to my second favorite. The new winner? Ativan. Ativan was an anti-nausea drug, but had the side benefit of just calming me down and putting me to sleep at night.
There is a funny relationship between cancer and prescription medication. You can pretty much get any drug you want. There is not a lot of questioning or justifying going on. I would ring the bell, a nurse would look in the door, I would say “Ativan?” and then a little baggy would be added to my IV poll. I am pretty sure if I said “crack” it might have taken them longer, but eventually a rock and a pipe would show up. The thing is the nurses knew what was coming, and how bad it could get.
One nurse mentioned the difference between different ages going through the transplant. Younger folks (in their 20s) more or less wanted to be knocked out for the duration. Older patients had a myriad of other health problems that kept them in bed. The few of us in the middle (Hodgkin’s Lymphoma tends to strike folks in their 20s or their 60s) were the walkers pacing up and down that hallway. Perhaps we middle aged folks realized that the ability to walk and bounce back from chemo could not be taken for granted.
On Day -1 I ate ice chips for 15 minutes as the last of the BEAM cocktail was infused – the final part of my lethal injection. My bone marrow was now dead. I would now be dead if I didn’t get my frozen stem cells back.
Day 0
I had a bit of an audience for my actual transplant. My wife was there. Joe had come in from Boston. My mom was there with her husband Bob. The transplant started out with Ativan to keep me calm. The transplant nurse practitioner was clearly in charge. She had been with me every day, and had been a great source of information. She cleared the hallway and up came my stem cells, now frozen in liquid nitrogen (no Igloo cooler), and a water heating table. Dr. P, the head of oncology, was on duty, and he would push the actual stem cells. I lay in bed, the only person in the room without a mask (my audience also had red clown noses on over their masks to show the occasion the proper respect).
I had six bags of stem cells to go through – the result of my three days of harvest. The first bag was thawed and transferred into a very large syringe that was attached to my TriFusion catheter. The nurse practitioner prepared me. “As Dr. P pushes the stem cells in you may feel cold. You may also get nauseous. Most people feel a tightness in their chest.” Dr. P started pushing.
The TriFusion catheter is a relatively large tube that is also called a central line. A central line is one with direct access to the heart. The cold stem cells and preserving liquid were being pushed pretty nearly directly into my heart. The pressure in your chest feels more like your heart just got blown up like a balloon. It is not exactly painful, but it is not comfortable. Then I began to stink of creamed corn.
Stem cells are frozen with a preservative. This preservative gets absorbed by the blood and then exhaled through the lungs and your pores. For the next three days I would stink of creamed corn.
After the first syringe went in, they defrosted the next bag, and pushed the second syringe then the third.
At some point, as they were thawing another bag a priest from my church snuck in, spread oil on my forehead and disappeared. A drive by blessing.
The fourth syringe went in. I was shivering and a nurse and my wife covered me head to toe in blankets. Then the fifth.
An hour later, it was done.
Days +1 to +9
Here’s how Nurse C, another brilliant nurse in the transplant ward, explained what happens after the transplant:
Think of your new stem cells as college students. Right now is their first day of their freshman year. They’re trying to figure where everything is. They need to find their dorms (the way into your bones) and classes. In the next few days, they’ll do what college kids do when they are away from their parents, they’ll party. Unfortunately, you get the hangover.
The next few days they’ll mull about, not quite sure what they want their major to be and what they want to do with their life. Then about Day +5 (when they start injecting me with Neupogen again) they’ll get their first instructions (make white blood cells). They’ll pick their major and get to work.
A few days later (Day +7ish) they’ll begin to graduate, and get to work (in this case moving into my bloodstream and fixing all the things the chemo broke). They don’t have time to be milling about because there is so much work to do, and so few graduates to do it (in essence, I’ll be making blood cells, but they won’t show up on the blood tests).
Around Day +10 the stem cells will all begin to graduate and your counts will begin to recover.
Now I love this analogy for two reasons:
- I understand it.
- I can hold on to the idea that in the midst of feeling like crap, at least part of my body is having a good time.
It also explains why getting the lethal dose of chemo didn’t cause too many side effects, but Day +1 to Day +9 was a downward spiral. I got very tired (my wife and mother’s watchful visits became more about watching me nap than getting me to walk). Nausea got worse. Eating became a chore. The side of my tongue grew a sore that made it painful to talk. My throat felt like I had swallowed glass. With no white blood cells to fix the damage the chemo had wrought, I just felt worse and worse. I began to think the purpose of chemo was to make the thought of death much more palatable. I was receiving regular transfusions of red cells and platelets.
Day +9 was just a mess of lying in bed, passing in and out of sleep, and wanting it all to be done. Sleep – take oxycodone – sleep – Ativan – sleep – forced shower – sleep. You get the point. Finally, on Day +10 my counts showed the first sign of recovery; the first signs that the transplant was working. I had a white count of 0.3.
Loss of Hope
I woke up the morning of Day 10 with good news. My white blood count had climbed from 0.1 to 0.3. This was the first concrete sign that my stem cell transplant was working. My sores would start to heal, my pains subside. Good news. My wife was ecstatic, my kids did a happy dance video. I, on other hand, got depressed.
You see my life for the past two years had been full of false starts and promising milestones. I am declared seizure free, and two weeks later I am in the hospital with dangerously low platelets. This, in turn, led to a cancer diagnosis, so into chemotherapy I went — a chemo with a nearly 90% cure rate. July rolled around, we all celebrated the end of chemo, and a seemingly clean PET Scan. Three months later, another biopsy showing that the lymphoma had not gone.
And so there I sat on the morning of Day +10, in the bone marrow transplant wing of the hospital, at the end of 3 months of lethal chemotherapy and stem cell collection, after 16 days of the systematic destruction of my digestive system, and there was hope? How could I hope again? How could I convince myself one more time that THIS time, THIS treatment, THIS procedure would be the one? When does optimism simply dissolve into deliberate ignorance?
Many had called me brave, or inspirational in my fight with cancer. There is nothing brave about battling cancer. The alternative to the battle takes the decision away. Chemo or death? Easy choice. Chance to live 5 to 40 more years…yes how brave of me to chose that.
Then I thought about my new life, the one we celebrated the day the stem cell were injected into my chest, February 24th. What would this new life be? Should I return to my former ways? Grants, speeches, projects, advisees? Should I recommit to changing the world? That work involved more than me. It would involve commitments of others, others that I had, over the previous two years, let down…a missed meeting, a failed project, dropping of commitments. Could I change the world and avoid that? Was it time to become the tenured full professor who teaches his classes, writes his books, and disappears into the ivory tower?
Hadn’t I earned that? Didn’t I deserve to be selfish and live every day just for itself, with my only effort to change the world through my wife and kids? Wasn’t that enough?
All these thoughts really got to me. Nurse H was seriously worried. She called in the Nurse Practitioner to talk to me, and probably prescribe some anti-depressants.
Then I thought “WHO THE HELL DO YOU THINK YOU ARE?”
Who among us is promised a full day on this earth? Who among us is free from the threats of disease, or violence, or stress, or poverty? How many people do I know that every day fight to pay the bills, who may go hungry? How many of the “lucky people” I walk by, those without cancer, are fighting their own demons of drugs, or discrimination, or abuse? Retreat to the Ivory Tower?!? Talk about a privilege problem. How many people would be happy with any job so long as it provided a paycheck? How many people would long for a roof over their heads? It must have been tough going through this medical procedure…with health insurance!
I had cancer and it might come back…and you may lose your job, and he may have a heart attack, and she may lose her child. We cannot live life cataloging potential disasters and saying “At least that didn’t happen to me,” ignoring that it happened to others. That is not living, that is hiding, and the only greater sin is believing that you have no part to play in the alleviation of other people’s pain.
You see, that’s the thing about hope – it is not a guarantee or a promise. It is a prayer, and desire, and it lies at the core of making this world better. We fight inequity, poverty, corruption because we hope for a better day. We teach because we hope we can impart some idea that will blossom into a better world for all. We raise children in hopes of a better future. We marry because we hope we can live up to the promise of our spouses. We work either out of the hope that our efforts will improve the world, or at least that the wages of our labor can provide a better world for us.
I have made a career of calling people to service. In the classroom, on the web, on stages around the world I have tried to equip an army of the hopeful to improve society. I never made a promise to that legion that our cause was guaranteed, or easy, or simple. But I did try to give hope. That hope continues with or without my cancer, or my very life. But while I have the ability to improve the world even a small bit, I will do so with hope.
That morning my white blood count went from 0.1 to 0.3. The doctors and nurses were hopeful that my levels would continue to rise to the point I could go home. They couldn’t promise it, but they could hope for it. I hoped they were right, because I had a lot of work to do.