Blood Ties

Donating Stem Cells for My Father

April 27

In ninety minutes I’m going for a blood test to determine if I can be the donor for a stem cell transplant that might save my father’s life. My sister is taking the same test 2000 miles away in Colorado. I’m excited, and I’m fairly terrified for a couple reasons.

First is just the fact that my dad is getting ready to have this procedure. More than five years ago, he was diagnosed with an aggressive form of chronic lymphocytic leukemia (CLL). After years of various therapies and side effects, he desperately wants this treatment. It’s the cure, the only way he can beat the disease, but it’s a rough road under the best circumstances. There’s a better-than-infinitesimal chance it can kill him.

Then there’s my own cowardice if I am chosen as the donor. There’s nothing I’d rather do for my dad than provide the stem cells that could enable him to live a life without this disease. But being the donor comes with a cost. Self-administered injections beforehand to gin up cell production, and medications to counter the side effects of the injections. Then a half-day or so hooked to a machine by an IV while my blood is harvested for stem cells.

I am terrible about anything related to doctors. I break out in a sweat, get dizzy, and feel faint. When I was in my early twenties, I left an office after a routine blood test and forced myself to tough it out as I began to lose it. I staggered twenty feet into a parking lot and collapsed on the hood of a car. Luckily nobody saw me. That has never happened since, but I don’t have any illusions that it can’t. There’s nothing rational about it. I know in my head that there’s nothing to fear, but I’m Pavlov’s dog, drooling when the bell rings, a slave to my conditioned response.

And I know I will do whatever has to be done when the chips are down. But I am fucking gutless for even thinking of my own fears compared to what my dad faces.

Later that afternoon, I stop by his house. He’s steeling himself for what lies ahead. His spirits are high, but he’s also terrified at the prospect of going through with it.

He fills me in on details I didn’t understand before about the process. The first three weeks will happen in the hospital. It’s the time when he’s most vulnerable — he’s at great risk of infection while he has no immunity, and his body might also reject the transplant. After three weeks, he moves to an apartment next door to Johns Hopkins Hospital so he’ll be close by for treatments every day for the next five or six weeks. His wife Diane, my stepmother, is going to be there with him through the entire nine weeks. Then it’s home for a long, slow convalescence. And if the transplant succeeds, the disease is gone.

He also tells me that the odds keep getting better. When he was first diagnosed in 2009, a transplant was a fifty-fifty proposition. The last two medications he’s taken weren’t available then. That’s progress.

I leave the house feeling somewhat better about what awaits him. It’s a perfect spring evening, and I decide to walk forty minutes from his house in Georgetown to our apartment in downtown.

Five minutes later, he calls as I’m walking past a park filled with Labradors chasing tennis balls.

“I just got off the phone with my doctor. He says I’m not ready.”

He sounds crushed.

I’m sorry, I say, and ask if this is just a delay. It is, or it could be. Once again the only truism I’ve absorbed from his battle with this disease crosses my mind: the only thing that’s certain is that nothing is certain.

He asks me to email my sister and mother. He’s too devastated to do it himself.

I’m disappointed for him even as my own fear about being the donor evaporates. Part of me knows now that I’m ready to do it now, even if we have to wait.

June 29

Fast forward a few months, and I am in the lobby of the Sidney Kimmel Cancer Center at Johns Hopkins Hospital, waiting for a physical to check me out in the final preparations to be my dad’s donor. He has gotten the word from his doctor that he’s ready, and I have been chosen. I am far less freaked than I was months ago, mostly because the simple act of writing out my fears helped put things in perspective.

I go through a series of tests over the course of the day, and I break out in a massive sweat after the blood test. It takes fifteen minutes or so just to get my bearings so I can stand up. The remaining tests are no big deal — vital signs, EKGs — but the interviews and meetings prove fairly intense. I get taxed by nerves while talking to a couple of the nurses and doctors and find myself yawning nonstop, trying to get enough oxygen to process both the details and the emotions.

At the end of the day I am worn out from seeing dozens of people with cancer. As clean, modern, and well-lit as Hopkins is, it is still filled with people suffering all kinds of discomfort, either from their diseases or their treatments. I don’t know how they do it.

July 11

One week from today I am scheduled to begin injecting myself with drugs to stimulate my stem cell production. And suddenly I wake up with a sore throat, after not having so much as a cold in over a year. There’s no doubt that the stress of anticipating the transplant has weighed on me and compromised my immune system. There’s an irony in there somewhere, but I can’t appreciate it right now because I don’t want to get sick and delay this.

By that evening I feel somewhat better, and my wife Betsy and I meet my dad and Diane for Chinese food. We all know this is the last time we’ll go out before he enters the hospital. It’s clear they are heavily stressed by what awaits them. I deliberately avoid mentioning that I didn’t feel well earlier in the day. No reason to add to their burden when I might feel just fine the next day.

July 13

The sore throat returned and got worse, so Monday morning I contact Johns Hopkins Hospital. They immediately ask me to come in that afternoon for a check-up. My first concern is that I’ll delay the transplant. My dad is scheduled to enter the hospital on Friday and begin receiving chemo in a sequence leading up to the transplant, which means his clock begins ticking in four days. My second, larger concern is that I’ll give him some germ that will kill him.

While I’m waiting for my checkup, I notice that my perceptions have changed. I don’t just see suffering people around me; I see people fighting to get well.

I get a throat and nose culture, and the woman who did my initial physical checks me out pretty thoroughly before sending me home. We’ll be in touch over the coming days.

That night I talk to my friend Paige, who reminds me that my only job this week is to get well for my dad. It’s simple but clarifying advice. I clear my calendar for the next two days. I can’t screw this up.

July 15

The sore throat migrates to my chest, where it becomes a cough. I’ve had asthma since I was a kid, and this has always been my progression when a cold takes root. I communicate with Johns Hopkins by email on Wednesday and Thursday, by which time I am feeling a little better, though the cough is still there. I err on this side of telling them everything, not wanting to withhold any detail that might be important.

By midday Thursday I receive an email from my caseworker at Hopkins telling me that my tests were all negative. I report that I’m getting better rather than worse. We’re moving ahead.

July 18

Tonight I have to begin injecting myself with a drug that will increase my stem cell production until the collection takes place on July 22.

I have to give two injections into the skin around my belly each evening for the next four nights, and on the morning of the collection I have to wake up at 5 am to do a final set of injections right before the collection. Hopkins educated me about a host of side effects that could occur, the most common of which is bone pain. They’ve given me a prescription for oxycodone, which scares me. I’ll use it if needed, but I’m hoping it doesn’t come to that.

By 7 pm I am ready to get it over with. Betsy reads over the directions from Hopkins along with me to make sure I do it right. I swab my belly with alcohol, grab some skin around my navel, and manage to slide the needle in and empty the syringe. Not a big deal. I do the second one more easily. Two down, eight to go.

Around 2 am I suddenly bolt awake, feeling like I have the strength of ten men. My first thought is that this is just anxiety about the week ahead. My mind races, and fortunately it lands on a problem I’ve been trying to solve for work. I get out of bed and jot down notes for the morning. At least something good has come of this bout of insomnia, which lasts a couple hours.

The next day I wake up with a dry, hard cough. Turns out this is one of the common side effects of these injections, though it’s hard to know if it’s different than the cough I just recovered from a day earlier.

July 20
Two days later, the main thing I’m feeling is jittery on the inside. My body is vibrating on a different frequency. I keep waking up around the same time at night. I force myself to stay in bed, hoping to fall back asleep. I chalk this all up to being a nervous wreck. The hard, dry cough persists. When I walk the dog in the morning, my joints are a little stiff, though not painful. Even the dog notices I’m moving slowly. This must be what it feels like to be an eighty-year-old man.

In the early afternoon, I notice a wheeze has crept into my cough. This is listed as one of the severe side effects that demands attention. I email my caseworker at Hopkins, and the woman who had checked me out calls right away. She says I either see a doctor immediately or go to the emergency room. I’m able to talk my way into my doctor’s office on twenty minutes notice, and I spend a couple hours getting examined. I’m okay, but the woman who has been seeing me at Hopkins puts me on Benadryl, an allergy medication, in case I’m having a reaction to the injections. This makes a lot of people drowsy, but in my speedy state it doesn’t make a dent. The wheeze subsides, which means the Benadryl is helping.

At this point it’s 18 hours until I arrive at Hopkins for preliminary tests. At dinner my appetite suddenly vanishes. That evening I make my checklist of all the stuff to pack for the hospital. The stem collection process itself is supposedly painless and boring, so I bring some magazines. They’ve also told me to bring snacks to keep my energy up during the collection. I’m only interested in old lady foods: Chessman cookies, tea biscuits, and Lorna Doones. I’ve never eaten Lorna Doones in my life, but butter cookies sound right just now.

I wake up again as usual in the middle of the night. This time I’m hot and feverish, a common side effect, but I’m terrified that I’m going to give my dad some germ that’s going to kill him. I remind myself that I’ve been transparent with Hopkins about everything, and that they’re the pros, but my anxiety is peaking. Betsy does her best to calm my jitters, which are now closer to the shivering sensation of having the flu. It’s a long night.

July 21

During the ride to Hopkins for preliminary tests I write down every single thing I can possibly tell them to make sure I’m not going to cause a problem for my dad. After blood tests and vital signs, I finally see the transplant coordinator. I walk through my list of all the symptoms I want her to know. She asks about my side effects from the injections, and I tell her I’ve had no bone pain, and that the worst part of the last few days has been feeling jittery, which I attribute to my own nervousness. Then she tells me that jitters can be a side effect, since my body has been working overtime to produce additional cells for the past five days. It sure would have been nice to know that these jitters have been chemically induced, not least because it has been rocket fuel for my anxiety over the past several days. My stress drops instantly by a factor of ten. I’m not going to kill my dad. Everything is on track for the D-Day tomorrow.

After my tests, I go to my dad’s room in the hospital. It’s the first time seeing him since he checked in. Diane has been writing daily updates about his progress to date. So far, no side effects from the chemo he has been getting. The hard part is likely to hit after the transplant. The three of us hang out in his room, just shooting the breeze about Donald Trump’s latest inanities and whatever else is in the news. Diane orders Chinese takeout for us and picks up a Boston cream donut and a birthday candle to mark my upcoming fiftieth birthday, which is five days away. I excuse myself to do my injections, take my shirt off, and finish my second-to-last round right in front of them. This is our new normal. I don’t have much of an appetite and can’t imagine eating a cream-filled donut, but I feel strangely peaceful and settled after spending three or four hours with them. As birthday celebrations go, I couldn’t have asked for anything better.

July 22

I’m in a hotel a mile or so from the hospital. After falling asleep for a couple hours, I’m up at 1:30 as usual with the jitters. I remain awake in bed until 3:50 am, when I take more allergy medication. I go back to bed and close my eyes for another hour and ten minutes until it’s time to give my final injections and get ready for the day ahead. First I’m going to be put under and have a special IV inserted in my neck. When I come out of that, I go on for the stem cell collection. Nobody knows for sure how many hours the process will take; it all depends how many cells they get.

When I get to the hospital early at 6:15, I notice an allergic rash on my forearms, and my throat feels somewhat tight. The allergy to the injections has intensified because I had to inject twice in a span of ten hours. I tell the admitting nurse, who asks me a battery of questions. She’s a seasoned pro who looks a little like Edie Falco as Nurse Jackie, and she sets my nerves at ease with her thoroughness. Then the physician’s assistant who’s going to insert the IV grills me with more questions about my reaction. He listens to heart and lungs and decides my throat isn’t going to close up on his operating table. The staff puts me on a gurney and wheels me away.

The IV insertion goes off without a hitch. I remain awake but sedated throughout. I don’t feel high, though I know I’m on Dilaudid, a powerful narcotic. I hear the physician’s assistant say, “Give him another 50 cc” at one point, but I feel no difference because I am so speeded out from the double injections. When it’s over, there’s no sleeping it off in a recovery room because I never fell sleep. Somebody wheels me through a series of hallways to the main event.

The actual stem cell collection takes place through a process called pheresis. I’m hooked up to a centrifuge that’s nearly the size of a washing machine. My blood goes out one tube and back in through another, minus my stem cells. Sonia, the woman running my procedure, is incredibly friendly and willing to answer all my questions about the science of what’s happening. I send text messages to family members and friends once the process gets underway. I can feel something happening in my body, but it’s hard to tell exactly what. As Sonia works the machine throughout the process, I am occasionally overcome by sudden waves of fatigue, and then I perk up again. I become incredibly thirsty and drink a lot throughout. At various points my lips begin to tingle, which means my calcium level is dropping. (Don’t ask me why, but it happens when your blood gets spun through a centrifuge like this.) Sonia gives me Tums the first time, and then adds a bag of calcium to my IV to replace what I’m losing. I read a few magazine articles, but it’s hard to focus on anything for too long. Finally four hours pass, and the machine slows to a halt. We’re done. I feel a huge wave of relief wash over me.

Now I wait while the count takes place to see how many stem cells have been collected. I’m parked in a bed in a waiting area on the same floor as my dad. Two hours pass, and I’m still waiting. Fatigue is hitting hard now. My friend Paige has graciously offered to come from DC to pick me up, and when she arrives at the hospital I let her know that I’m still in limbo. Diane offers to meet Paige at the building entrance and bring her up to see me.

While I’m waiting for them, the doctor arrives to tell me the result of the collection: it fell 10% short. They are admitting me to the hospital overnight to do another collection the next day. That means more injections that night and the next morning. I had known this was a possibility, but had dismissed it as a remote one. It doesn’t happen often.

I am devastated that I’ve fallen short. I tell the doctor about my reaction to the injections that morning and try bargaining out of additional ones. He explains that I would be unlikely to create any stem cells without them, and that the transplant will likely fail without the additional cells. I have to face reality. One more day of jitters. One more session on the blood washing machine. I call home and give Betsy the bad news that I’m not coming home.

When Diane and Paige find me, I am close to a zombie, fatigued by the process and depressed by the prospect of another day of it. I stumble through our conversation, grateful for the company but barely coherent. They leave me to rest and wait for a proper hospital room for the night.

After resting for an hour or so, my energy begins to return. A nurse comes to escort me to my room for the night, which is a three-minute walk from my dad’s room. Suddenly my appetite returns. I find my way to the pantry on the floor and seize on Honey-Nut Cheerios and milk. More white food that I would never choose under normal circumstances. I haven’t drunk milk in probably twenty-five years, but tonight I chug it down directly from the carton.

Feeling more or less back to normal, I wander to visit my dad and Diane. We hang out for an hour or two and again it calms me just being with them, even though I dread the injections of the jitters that await me. No matter what happens tomorrow, this is the last mile for the transplant. My only goal is to make sure my dad gets enough cells for it to work. Nothing else matters. By the time I get my injection it’s nearly 9 pm. One more night of bouncing off the ceiling at 1:30 am.

July 23

I manage to sleep a few hours in the early morning before the day begins. I feel surprisingly good knowing that this is the endgame. Around 8:30 my nurse arrives with news: no injection this morning, and my collection is scheduled to start in 30 minutes. This is a welcome surprise that brightens my mood. I wolf down a bowl and a half of Cheerios and more milk to stock up on calcium. New habits form fast.

When I arrive at the pheresis center, I meet Essy, the woman who will run my procedure today, and she delivers more good news. There was a recount of yesterday’s stem cell collection, and it turns out there was just enough. Since I’ve been prepped to produce more cells, though, the doctor wants to collect a couple more hours worth, which will only help. A sense of relief pours through me. When Essy leaves the room for a moment, I well up with emotion. We made it. I fire off a series of text messages to family members. My dad and Diane have already heard, and they have some news as well: the transplant is underway. My blood from yesterday has slowly started to drip in through his IV.

I’m hooked up to a different machine today, and it produces a slightly different sensation in my body. I chat with Essy about everything from our dogs to our families — we each had a tough old grandfather from Eastern Europe who grew up as a coal miner in western Pennsylvania. The two hours whiz by fairly quickly, without the waves of fatigue I felt yesterday. I am done.

When the second collection is over and I return to the oncology unit to wait for the count, I make my way to my dad’s room. I have the surreal experience of watching my blood drip into his body while we talk about a recent biography of Andrew Jackson that I bought him for Father’s Day. In the days and months ahead, our cells will be locked in a war that my cells are supposed to win, but only gradually. The science behind it all is staggering. His nurse tells him that today is Day Zero, his new birthday. He responds by asking if there’s any ice cream.

A couple hours later, after all my tests are complete and my IV has been removed, he receives all the blood from today’s collection. The transplant is complete. I’m overwhelmed with gratitude for so many things. The oncology staff at Johns Hopkins, who astound me with their knowledge and compassion for their patients. The family and friends supporting both of us. The resources that made this possible for him. The luxury of being able to set my own schedule to do this.

My dad and I look at each other. He thanks me for what has to be the tenth time in a day, and I tell him I wouldn’t have it any other way. Neither of us knows what lies ahead. All that’s for certain is that we’re in this together.