I desperately did not want a bone marrow transplant. In my mind, it was a horrific worst-case scenario, something to be avoided at all costs. Because Aplastic Anemia is likely an immune disorder, the standard of care treatment for patients with Aplastic Anemia for a long time involved suppressing the immune system with horse or rabbit antibodies. This treatment was developed by Dr. Neal Young (who, yes, shares a name if not a spelling with the famous musician) in the 1980s, when bone marrow transplants were far more risky than they are today, and Aplastic Anemia was a death sentence.
The antibody treatment is much less severe than transplant – people don’t really die from it, ever, and it has a good chance of working, at least for a time. (It is not, as the doctors would say, “curative,” and it would have to be monitored, but its positive effects could potentially last a lifetime.)
At the time that I was sick, there was a promising clinical trial at the NIH that treated people with ATG (horse antibodies!) and another drug that would stimulate bone marrow cell production. It seemed to work even better than the traditional formulations of antibody treatments.
Once I made the decision to try that first, we quickly made arrangements with the National Institute of Health, and later that week we were driving to Bethesda, Maryland—I couldn’t get on a plane with my platelets so low. A friend of a friend of a friend offered my parents a place to stay. It was a house that her recently deceased mother had been living in. My family and I were floored by this extraordinarily lovely gesture, just one example of many kindnesses from dear friends and strangers alike that helped us get through.
I was fantastically lucky to be at the NIH. Because they only do clinical trials, the care and medicine is 100% free. No co-pays, no insurance companies involved. All medication is free and they send you home with months’ worth of supply. The rooms are spacious and painted in bright, optimistic colors, rather than the sterile white of traditional hospital rooms. The food is actually good. Like, edible breakfast sandwiches good.
Because I wasn’t fully immunocompromised, I could kind of wander around the NIH, eating takeout with my family in different rooms of the hospital, or listening to the classical musicians who would play in the lobby. I didn’t think I looked super-sick—maybe kind of pale—and I wore my regular clothing, too, so I fantasized that people just thought I was a visitor.
On the other hand, the people could be a bit cold. We were asking if my parents would be able to stay at the housing for young adults and teenagers for future visits, because the cut-off was 25 years old and I’d recently turned 26.
“What do most families in this situation do?” I asked.
“Most families of 26-year-olds don’t have both their parents come and stay with them throughout their treatment,” the social worker snapped. (Haha—good thing this woman will never know that now, at 32, I’m still on the family cellphone plan and recently took a vacation with just my parents.)
But overall, it was not a terrible nine-day stay in the hospital. I figured that in a matter of three months, I might be cured and back to normal, living in New York City and resuming the new gig I had just started. (I worked in political communications, and at the time, the idea of taking a year off from my nascent career was almost as unthinkable as the transplant itself.)
But as time went on, I wasn’t improving as much as anyone would hope. I had stabilized to the point where I didn’t need transfusions to survive but beyond that, my counts didn’t continue to rise. And as they tried to taper me off the immunosuppressants, my blood counts got worse. The final straw came when they found some sort of mutation of unknown import that could be a precursor to leukemia—but then again, it might not.
I’ll never know why it didn’t work for me but worked so well for so many others. (An absolutely wonderful college student I met at the NIH seems to be thriving all these years later.)
I told my hematologist in Boston that I was thinking of moving to transplant—the thing that I had been most dreading. He thought the decision made sense.
“You’re alive,” he said, “but you’re not really living.” As a former philosophy major, I was vaguely familiar with the concept of bare life and didn’t want it to apply to me.
I was re-reading Deathly Hallows at the time and felt like I was Harry Potter, walking into the Forbidden Forest to meet his death. (And no, as a millennial, I will not “read another book.”) It felt so unnatural to me to check myself into a hospital so they could blast me with chemo and radiation, making me substantially sicker before I could get better.
I was incredibly lucky in that the transplant for aplastic anemia, developed in part by my incredible doctor, Dr. Joseph Antin, had a very high chance of success and survival. But as with any risky and potentially even life-threatening procedure, it was scary.
Just as Harry summons the ghosts of his loved ones to protect him, I felt I needed protection as I prepared for this metaphorical battle.
My therapist, Dr. Karen Fasciano, offered incredibly practical, helpful advice. She advised me to create a journal of things that sustained me: quotes, poetry, life events, photos. Then in it, she advised, I should also include letters from my family and friends, words of encouragement and love that served almost as a protective armor against the difficulties of the weeks ahead. It felt strange sending out a mass email asking for love letters, but so, so, so good to receive an outpouring from those who were in my corner. Oftentimes, people just want to know how best to help, and this was a concrete step I could give them to show their love for me.
This journal was incredibly sustaining – first, as something to do in anxious pre-transplant moments; second, as a way to summon words of encouragement and love from my support network; and finally, as a reference point during the long weeks in the hospital, when I needed a reason to slog through another day of nausea and exhaustion.
How to make your pre-transplant journal
- Decide what format you want. Do you want it to be a folder, a notebook, lined or unlined? Will you hole punch or paste your letters in? Will you draw your quotations in gel pen or type them up and print them out? Purchase materials accordingly.
- Send a note to family and friends requesting these letters. Here’s the one that I sent:
“Hi dear friends,
As you know, I will be getting a bone marrow transplant this summer, a procedure that involves a fair amount of time (2-4 weeks) in the hospital and in recovery (~100 days for the most intensive recovery and then a fair amount of time after that too). I am on track for a June admission date (roughly June 6, though nothing is fully confirmed).
Anyway, through all of this so far, you guys have been such a great support network and I could really use your help to keep that going here, too. To that end, it would be really incredible if you could send me any personal notes, quotes, poems, prose or whatever you think might be helpful for me to have on hand. I am planning to use the next few weeks to make myself a sort of notebook/compendium of happiness I can bring with me to the hospital! (If you couldn’t tell—and I bet you could—this suggestion comes directly from my therapist.)”
Your note definitely doesn’t have to echo mine, but it should be a fairly direct and specific ask for what you need and when you need it by. I was blown away by the love that poured in, by email and by snail mail, and it helped give me strength in that scary time leading up to the transplant.
- Think back to what inspires you. What books, poems, stories, advice and ideas have constituted the fabric of your life? What words or images make your heart soar, allow you to make sense of the stormy and chaotic moments? Gather these.
- What moments in your life do you want to remember—accomplishments, experiences, friendships, travel? What souvenirs do you have that remind you that when you get out of the hospital, you have a life ahead of you—time to go to concerts and see natural wonders and fall in love? Gather these.
- Now it’s time to assemble. As a very uncrafty person, I basically slathered all my items with glue pen and stuffed them messily into a notebook. But if you are creative with scrapbooking, I can imagine creating an aesthetically beautiful album of some kind. Create something that makes you happy, that you will like returning to in difficult moments.
- Bring it with you. I packed my notebook and brought it with me to the hospital, but I rarely looked at it. Just knowing it was there—a shield that I had built for myself out of my own experience of the world and the support of those I love—fortified me.
I’m curious: Did any of you have any rituals preparing for transplant that helped give you strength for the journey ahead? Anything that you are planning to do to prepare? Comment or drop me a line (firstname.lastname@example.org) to let me know.