ABOUT THIS BLOG
This blog chronicles my experience donating bone marrow—specifically, Peripheral Blood Stem Cells (PBSC). As I was getting ready to donate, I found it helpful to read personal accounts of others who had already been through the process (see Links page). I'm adding my own story to that body of anecdotes in hopes that it might answer someone else's questions. To read from the very beginning, start here.
NOTE: Clicking on the "Continue reading" link will take you to a longer version of the post that includes my thoughts from a Jewish and spiritual point of view.
THE WHOLE STORY
Tag Archives: bone marrow
Yes, another post with an exclamation point in the title—update received, and so far all is well! Engraftment was successful, meaning that her body didn’t reject my stem cells and they’re starting the process of creating a new immune system. She’s home from the hospital, although not yet out of the woods (rejection, infection, and other nasty things could happen at a later date)—but this was the first big hurdle. I’m glad to able to say “congratulations” in my answer to her note.
I am now very proud of my stem cells, if I say so myself, and of God (and many teams of doctors) for knowing what to do with them. This is great news to have at the start of the secular year, just as donating those cells was a fitting way to begin the Jewish new year. Good timing on the part of the universe, which sometimes does get it right.
A note! From my stem-cell recipient!
Of course the news was delivered via a cell phone message from the bone marrow people on Wednesday afternoon, same day and time as always. I guess Wednesdays are when they leave momentous messages. I’m at a client’s office at that time, and answer only when I see that number on Caller ID—which for awhile was happening every week. This time the phone was in my bag, and I didn’t notice the message until I was halfway back home. I ducked into a doorway and listened. Call me, said the woman who’d given me all the news since day one, and I’ll read it to you before I send it to you! I ran the rest of the way and called, out of breath.
I had no idea my recipient could get in touch before a year had passed. I recall references on other blogs to letters received, but the chronology was vague; I assumed they came after a year. But in fact both donor and recipient can exchange notes at any time, as long as they remain anonymous, via the agency that facilitated the transplant.
It was a beautiful letter, full of thanks. My recipient is a real person, and my stem cells are now doing their work in her body. It actually happened; I haven’t been dreaming these past 6 months; I have her voice, in writing, to prove it. She has a family, people she loves and who love her, and the goal of getting well in time to take part in a life cycle event next year. She received a transplant before that didn’t work. I am her second chance and, in clear, strong handwriting that I saw today when I finally held the actual note in my hands, wrote that she couldn’t find enough words to express her gratitude for my gift of life.
Ecstatic, astonished, overwhelmed, I exhaled the biggest ever sigh of relief… but a small part of me wasn’t surprised. For some reason I always imagined her as having grown children and a big family, as the note implied, perhaps because I didn’t want to think of someone so gravely ill as being at all like me, who have neither. Or that it was too sad to envision her all alone during this struggle. I had harbored a secret wish that she was nice and friendly, afraid of the opposite: that she coped with disease by becoming bitter, shutting off, and would never want to know me.
It’s still very early, less than a month after the transplant. Bracha is nowhere nearly out of the woods, and all I know about her condition is that she has enough energy to write, which seems like a good thing. I’ll get an official update in a few weeks, and then I’ll answer the note. The next update after that will be in April, or perhaps I’ll get a letter in reply. Even if I don’t, I now feel like God has done God’s job—and quite well, at that—for this phase of the adventure.
Whew. It’s taken me a while to catch my breath after the donation. Physically, it was over when it was over and all I had was a big bruise on my arm. But the emotional bruise was bigger; as expected, I felt adrift. But I was secretly sure that expecting the feeling would fortify me against it. Not so. Suddenly there was nothing to do but… nothing, no more anticipation, no needles to stick myself with, just waiting to find out what would happen. And the possibility that, worst case, nothing would—a month would pass, and another and another, and “my patient” wouldn’t be ready for the transplant.
But last week I got my monthly check-up phone call from the blood center, along with some very good news: “the product was infused” last Wednesday. Whew! Suddenly the whole adventure seemed scarier than even a really, really big needle: she jumped off the cliff, no turning back. And part of me jumped with her. I was taken back to the surreal feeling of that very first phone call: how is it possible that my cells can rebuild the immune system of a stranger? And how in the world can part of me be inside someone I don’t even know? But it is. My friends keep reminding me that they’re prime, healthy cells, and so have a excellent chance of fulfilling their purpose. I can only hope and pray, and try not to let good or bad fantasies of what might happen get in the way of living with the kind of patience and strength I imagine my recipient must have learned over the course of her illness, and the waiting for last Wednesday.
Some random things, in no particular order, that are (in my opinion) more challenging than donating stem cells:
- Having surgery of any kind
- Root canal
- Food poisoning/stomach flu
- Ending a relationship
- Beginning a relationship
- Maintaining a relationship
- Obtaining a college education
- Working hard enough to pay all your bills
- Putting together an Ikea wall unit from instructions in Swedish (unless you’re Swedish)
- Finding a job in this crappy economy
- Being audited by the IRS (so I’m told)
- Traveling anywhere by air, especially if changing planes is involved
- Chanting Torah
So I encourage everyone who is physically able to register with the NMDP. If you’ve lived through even one of the things on this list, trust me—donating stem cells won’t seem hard at all.
I came home and fell asleep, and made it to Shemini Atzeret services the next morning after 12 hours of unconsciousness. I felt quite rested, although my energy level was less than normal and I looked kind of out of it. But happy. I also had an enormous bruise on the inside of my left arm, thanks to two IVs, bandages, and anticoagulant. (Something similar happened years ago when I gave blood.) It hurt to straighten my arm or apply pressure above the elbow, even that of a long-sleeved shirt. It’s much better as of this writing, a week and a half later—today was the first time I woke up without any pain from sleeping on it—but still does hurt and looks (in the words of a friend) like I was the victim of domestic violence. I’m sure it will be better by next week; I haven’t at all minded this physical sign of my donation.
I came home, slept some more, and headed back to the synagogue that evening for Simhat Torah services. I was glad to watch the joy rather than participate; my blood dancing through a big machine the day before was quite enough activity. The following morning I did manage a few circuits around the Torot while being very careful not to bump into anyone. And when I came home that afternoon I was welcomed by a beautiful bouquet of pink and white roses, still open and alive more than a week later, from the blood center. I’ve made a point every day since to stop and inhale their aroma first thing in the morning, even before coffee, and spend a moment in gratitude for my life and health.
September 29, 2010
Day 2 was less dramatic because I knew what to expect, although no less intense—but not hard at all. I took myself out for breakfast and ordered the exact same thing as the day before (scrambled eggs, hash browns), since it seemed to work well. I watched through the diner window as people sped past to get to work, and felt suddenly swept up in routine, as well. Except my work for the day happened to be donating stem cells.
I left the diner and tried to get a cab, but soon realized this was impossible during rush hour. So I took a bus to the hospital, instead, which did feel strange—a little too ordinary for the task at hand.
I arrived at 9AM and met my friend Y. , who had graciously offered to sit with me for the day. Although they hadn’t yet finished counting the cells by 9:30AM, I was hooked up to the apheresis machine just the same. The “in” IV was placed in my right arm after a few tries (my veins were not in terrific shape after a day of hard work) and the “out” in my left, as before. But after a few minutes the machine started to beep—my blood was not flowing through the needle. It and my arm were moved and re-adjusted every which way, to no avail. Then F., my nurse for the day, called over A., a distinguished-looking man with some sort of European accent and apparently the go-to-guy for such problems, and they decided my right arm was a lost cause vein-wise. The “out” needle would now go in my left—along with the “in,” through a different vein in my hand. A nice side benefit: I would have complete use of my right arm.
So IVs were moved around with very little pain (although I wasn’t exactly relaxed about the whole affair), blood began flowing, and all was well. Turns out my veins weren’t at fault, but rather a small blood clot at the tip of the needle site that appeared before the anticoagulant could start flowing.
By then my cell count had come back from the lab; they had over half of what was needed, but decided to keep me hooked up for the full four hours. The rest of the day was just like the day before, except this time I was in a different chair situated right in the thick of things. (Which was fine, except when someone needed to get into a closet and opened the curtain to my little chair area just when I decided to brave using the bed pan. We smiled at one another—hey, we’re all professionals here, no problem at all.) After hour three I was again completely exhausted, but this time hour three coincided with lunchtime. Suddenly I didn’t feel well—dizzy, lightheaded. Y. and the nurse reminded me to eat, and I was just fine after a few bites of tuna on whole wheat.
Finally, hour four—the machine beeped “DONE”, and a woman in a white coat carrying a big cooler swooped in and left with the bag of my cells. I was steadier getting up this time—my body, and particularly my left arm, had gotten used to not moving. All three donor liaisons arrived as I got unhooked, like an official farewell.
I couldn’t leave the hospital until my platelet counts were checked—below a certain level required that a nurse tell me officially that I shouldn’t skydive, etc. So Y. and I, along with K. from the blood center, moved into the waiting room. A man sat there there as well who looked and sounded like my sort-of Uncle Ray (my mother’s best friend’s husband)–tall, bald, amiable and funny. We all got into a conversation about the weather.
Suddenly K. stared at the man. “You’re the courier, right”? she said. He nodded. (I assume she recognized his voice from phone calls.) This was the person who would hand-carry my stem cells to wherever in the world they needed to go. I don’t think we were supposed to meet, and soon the conversation grew more circumspect, no mention of cities or names. C. returned with my blood counts—low, as expected. (They would be back to normal in a week.) F., the nurse, came over to remind me not to operate heavy machinery. I was glad to go home, although didn’t want this adventure to end just yet—but I had the distinct feeling they were rushing me out, in case inadvertent clues were leaked about the destination of my cells. K. offered to get me a cab, and I gathered my stuff.
As I walked out the door, I turned and looked Uncle Ray straight in the eye. “Thank you,” I mouthed. He nodded.
(Probably more detail here than anyone cares to read, but I wanted to capture a picture of the entire process.)
It feels like yesterday… it feels like years ago.
September 28, 2010
My friend Z.* gamely showed up at my apartment at 7:30AM, I picked up a sandwich at the deli for lunch, and we jumped in a cab get to the hospital by 8. Trying to write a note to the recipient kept me awake for most of the night before, but I was too excited to notice I was tired. We were greeted by S., the blood center liaison I met during my very first set of tests back in May. I was given a slightly-too-tight wrist ID band, and a finger stick blood test at the lab down the hall. Then C. arrived, the sweet gentleman from the hospital’s donor center, and we headed down another corridor for my final Neupogen injection.
A nurse took my temperature and blood pressure, and I got on the scale. I had gained a pound since last week (they weighed me right before the first shot). No big surprise, I thought, considering all the Chinese food I ate that past weekend.
I was also sniffling, and my chest was congested. “You look like you have a cold,” C. observed. I felt fine—but thanks to that massive amount of white cells, my body was trying to fight something off even though there was nothing to fight.
Another nurse arrived, the same one who had taught me to stick myself with a needle. She went through a checklist of side effects, and the answers were the same as the previous four days; a little achy, but nothing too bad. Did people usually have a lot of pain, I wondered?
“Only the men,” she answered. “Cops and firefighters, big strong guys. We women are a lot tougher!”
She gave me the final two shots, and then S., Z., C. and I headed outside to a deli for breakfast. (NMDP protocol requires waiting an hour between the last Neupogen injection and the start of stem cell collection; other donor registries have different rules.) I had a big order of scrambled eggs and hash browns while admiring photos of C.’s daughter, and then we all headed inside to the blood bank. A nurse asked more questions (no, I have not become a drug addict in the past five days), checked my temperature and blood pressure again and another finger stick to test hemoglobin, and began to affix little ID stickers to a pile of paperwork.
This is really happening, I thought. Soon I will be stuck with big needles. I had a sudden impulse to run back outside, maybe grab a coffee and bagel and sit in sunlight in the park. But the room began to spin before I could do any of those things.
“I’m a little dizzy,” I said.
The nurse looked at me with alarm, darted out of the room, and before I could blink returned with Dr. D., in charge of the blood bank. His face radiated calm and confidence. “Have something to drink,” he suggested. The nurse handed me a bottle of water. I took a sip, but by then the wave of irrational fear had passed, vanquished by the doctor’s smile.
E. would be my nurse for the day, and he directed me to a comfy chair in the corner that looked like a cross between a hospital bed and Business Class. I climbed in, buttressed by pillows beneath my arms and behind my neck, and he began to describe the process while preparing needles, tube, dials, and other mysterious objects. (And I climbed out twice more to use the restroom. Four hours is a long time.) I was still nervous, even though I knew I was in the most competent hands in the country, maybe the universe. My cell phone rang: my rabbi, reminding me that the recipient and I were in everyone’s prayers. (I think God must have whispered in his ear: “Right now is when she needs to hear it.” It worked. I relaxed.)
The doctor, along with a bright-eyed, bushy-tailed young man I gathered was an intern, came over before I could get nervous again. For the next 15 minutes Dr. D. explained the workings of the apheresis machine in detail: how it would separate my blood into red and white cells, the latter containing the stem cells to be transplanted, and then return the red cells to my body along with Citrate, an anticoagulant, and calcium to counter a side effect of the Citrate. I should tell the nurse if I experienced any side effects of calcium loss such as numbness of hands, feet, or face. I asked my burning question: how did the machine know which were the stem cells? It didn’t, he explained. It was a centrifuge, so separated cells by weight—and so know how to grab the white cells. But they would look red in the collection bag, since the machine wasn’t quite smart enough to filter out all the red cells.
All the blood in my body would go through the machine 2 1/2 times each day. At any given time about 10 oz. of my blood would be in that machine.
Dr. D. and intern left, and E. prepared the IV. My right arm would be “out”. I closed my eyes and took a deep breath, and felt a little needle prick in my left hand, a.k.a. “in”. This was where my blood would return—minus the stem cells, so a smaller needle was just fine and I’d also have some mobility to do things like scratch my nose. It hurt a bit until he taped it down, and then I didn’t feel a thing.
Then he went to work on the “out” arm, a bigger needle (to transport that pound of extra stem cells) for the vein in the crook of my arm. He stuck me—not nearly as painful as I feared—and then un-stuck me. Even though the nurse declared my veins to be in excellent shape not just once, but twice, and I’d spent the weekend drinking gallons of water to make them as plump as possible, they were not cooperating. He called over another nurse, and they bent intently over my right arm—and suddenly it was taped. They had poked around and found a better vein before I could even notice.
The machine began to hum, kind of like the rumbling of a subway or laundry room, and I saw a clear liquid drip into the bag closest to me.
“Those are the stem cells,” said E. I said a Sheheheyanu prayer: thank you for this new season, this new beginning. Then my friend Z. came over and sat patiently for the next four hours, providing excellent conversation as nurses adjusted dials, straightened needles, hung new bags of liquid, checked my temperature, recorded numbers on forms at a little rolling table, and asked about side effects: none at all. (Thanks, I think, to the massive amount of calcium-rich cheese I consumed that weekend.) Although I wasn’t cold, another possible side effect, I was grateful for the tip I read on a donor blog about wearing socks, since the blanket over my feet had to be lifted to get my blood pressure from my ankles (since my arms were otherwise occupied). Every once in awhile Z. and I stared in awe at the aphereis machine. (On Thursday at Shemini Atzeret services, I kept seeing it in my mind’s eye whenever God’s name was mentioned. ) Meanwhile, the blood bank swirled with activity: a man in the next bed donating stem cells for an autologous transplant, his wife hovering patiently and nervously. Something important happening behind a curtain next door, nurses with masks going in and out. All the activity seemed routine and well-rehearsed, despite being miraculous.
I tried unsuccessfully to write emails on my iPad with two fingers. (By day 2 the iPad was a celebrity, with Dr. D. and E., the nurse, debating if it needed a phone or camera.) I did not watch any episodes of “Lost,” as planned, since I had no attention span whatsoever.
Soon I barely noticed there was anything stuck in my arms. And I had no sense at all that blood was leaving my body and returning at a rapid rate. At about 1PM I managed to eat a sandwich with one hand, followed by a chocolate bar kindly provided by C. After hour three, I suddenly felt exhausted and could barely keep my eyes open. The nurse explained that my heart was working harder than usual to pump all that blood, so it was like strenuous exercise without moving at all. But I forced myself to stay awake, since I didn’t want to miss a thing.
Soon another nurse came by and did some quick calculations: amount of stem cells needed divided by rate of blood flow = remaining time. Just a few more minutes. Then the machine flashed “ALL DONE!” (or something to that effect), and I closed my eyes and took another deep breath as the needles were un-stuck and neon pink pressure bandages applied. I couldn’t believe four hours had passed; it really seemed like no time at all.
I swung my legs slowly over the side of the bed and waited for the room to stop spinning. I put my feet down on the floor and they felt different than at the beginning of the process—lighter. I could tell immediately that something was gone from my body. I stood up and shuffled across the room to the bathroom (all that anticoagulant did take its toll), and then out into the waiting area. After a few more minutes to make sure I was intact, and a big piece of chocolate cake courtesy of the blood bank, Z. and I hopped into a cab back home.
I tried to answer emails later that afternoon, and even managed a few phone conversations, but by 8PM felt like I had run a marathon. S. called to let me know that they hadn’t finished counting the collected cells, so I should come back at 9AM the next day to find out how long I’d be needed on day 2.
* Because most of my friends seem to have the same first initial, I’ve picked random initials for everyone. They know who they are, which is what really counts.
Full story to come, but briefly—all done! Intense and exhausting (even though I just sat in a comfy chair for many hours each day and listened to the big chugging machine give my blood the best exercise it ever had), but not hard at all. I experienced no side effects, and they were able to harvest even more cells than needed. (See below, the bag on the far right, about 2 hours into the process on day 1.)
The nurse arrived bright and early again this morning to administer Neupogen shot #4 and leave me with two more Band-Aids on my right arm. The soreness, a dull, transient ache that moves between shoulders, thighs, and the small of my back, with an occasional joint twinge (neck, wrist), is nowhere nearly as bad as I feared. I guess this is bone pain, but could swear the discomfort is directly in my muscles. It reminds me of times when I fell asleep on the couch, or ran too far while wearing the wrong kind of shoes. It did get annoying enough this evening to break out the Tylenol with codeine, but doesn’t hold a candle to food poisoning, root canal, or post-surgical kinds of pain, all of which I know a little too well. I wish the NMDP would plaster an alert on their website: “It doesn’t hurt much at all! Honestly!” A number of people have told me they would never donate because of the pain, an unfortunate misconception often spread by the media because it makes for juicier plot lines.
(A word about misconceptions. That’s why I started this blog, as explained in the sidebar: to add to the body of donor stories and perhaps de-mystify the procedure for someone else. Initially I thought that donation entailed a big Roto-Rooter of the bones; I might have been frightened away entirely if not for those realistic first-person accounts. How dare I write this stuff, a nasty person who wouldn’t leave his or her name tried to comment here earlier today. It’s all about the recipient; I should shut up, be humble, and not tell a soul. I know that good deeds kept secret are the best kind, but also that we are responsible for one another and need to share knowledge and education about those mitzvot, or else we won’t learn how to do them. Other bloggers helped me understand, and I want to return the favor.)
OK, see you all when it’s over.
Yesterday I spent part of the day with old friends at a place where a nurse could not come to give me the second Neupogen shot. One of those friends, whom I hadn’t seen in about 25 years, was a doctor, and she agreed to supervise my self-injection.
Soon as I arrived, we headed into the women’s handicapped-accessible bathroom. “Wow, I can’t believe it’s been so long!” I said, and then pulled down my pants and began to laugh. It was, by any stretch of the imagination, a ridiculous situation. My friend, very serious back in the 80s and, I soon discovered, more so now, didn’t find it funny at all, which made me laugh even more. I quickly composed myself and laid the injection paraphernalia atop the toilet tank.
I was able to fill the needle with medicine, but was grateful for her presence—I didn’t realize that you have to keep pushing and depressing the plunger to get the air at the top to disappear. The first shot was easy, but halfway through the second I had a moment of panic that that the needle was going too far into my thigh, and froze. Very eager to leave the bathroom (“People might get the wrong idea!”), she pushed my hand away and finished plunging. She was already gone by the time I pulled the needle out of my leg. (She did eventually laugh about the whole thing later that afternoon.)
I felt just fine afterwards—tired, a few twinges. Woke up this morning without any pain. A chatty and pleasant visiting nurse arrived at 9AM to give me day three injections, along with a story of the famous bone marrow donor she visited a few weeks ago who got both their photos in the paper. My lower back, legs, and right shoulder did begin to hurt a few hours later, as if I had slept funny or overdone it at the gym. It was impossible to find a comfortable way to sit on the couch, but the floor was just fine. And the pain went away entirely after two extra-strength Tylenol. Now I’m kind of stiff, and glad I don’t have to take any long walks.
Another shot tomorrow morning followed by lots of distracting work, and then I have to write a note to give to the recipient. And download some movies to my iPad. And then I show up at the hospital Tuesday at 8AM, bringing layers of clothing because I’ll probably get cold during the donation. (But how will I put on a sweater if I have IVs in both arms?)
On Friday morning I left Sukkot services early and, lulav bag in hand, headed to the hospital to meet C. and K. for my first Neupogen injection. (K. was the person who called me that very first time in March, and whom I didn’t believe.) They shepherded me through a finger stick to test my blood levels, and then we went to a room down the hall to wait for a nurse. Someone came to take my vitals (how I managed to lose a pound during the holidays is a greater miracle than matching to be a donor), and then A. arrived.
I cannot imagine a better nurse to teach someone known to faint at the sight of blood how to inject herself with a needle, as I would need to do for the second shot. A. looked very much like an actress whose name escapes me: Jamaican, no-nonsense, perpetual smile, drily honest sense of humor. “I gave myself shots seven times a day when I was pregnant,” she said. “I’m a nurse, and it was still weird. But you can do it.” This was not resounding encouragement. C. handed me a big envelope with the paraphernalia required by both myself and the nurse who would administer the third and fourth shots. He removed the needles, which I was surprised to discover weren’t pre-filled. (“We’re old fashioned,” explained A.) I’d need to stick two of them into two separate vials, and then stick myself twice in the thigh. It was awkward to hold both needle and vial while pushing the plunger, and I had a moment of fear when she explained how to tap it to get rid of air bubbles—wait, isn’t that how people commit homicide (at least on House, M.D.)? Thankfully, not a danger in this case. (I probably couldn’t even give someone a mild headache with that little needle.) An air bubble would cause a bruise, nothing more.
“Just pretend it’s a dart,” suggested A., and grabbed a chunk of my thigh to demonstrate. Suddenly the needle was in; I barely felt it. (Never before have I been grateful for the abundance of flesh on my thighs.) I depressed the needle, just a little sting. I got up and filled the next needle, and then sat down on the table and stuck myself. Actually, I stuck myself and immediately pulled out the needle, almost a reflex action. The second try was successful, and I pushed the plunger. This one stung a bit more, since there was more medicine in that vial, but really wasn’t bad at all. I think the trick is in not thinking about the fact that you’re sticking a really pointy needle into your body.
I looked up and A. was beaming. “Excellent,” she said. I felt very proud.
So I went back home with the next three days’ worth of drugs and a prescription for Tylenol 3, as well as a goody bag filled with rainbow-colored candy, more Tylenol, a little “Be the Match” lapel pin, a sweet thank-you card signed by everyone at the blood center office and, best of all, a big dark chocolate Hershey bar. K. had explained that the anticoagulant administered during the donation would leach my body of calcium and possibly cause my hands and feet to become numb, so it wouldn’t hurt to beef up beforehand. So I went to the store and treated myself to three kinds of cheese.
Then I waited for the side effects. Some discomfort on Sunday and Monday would be a good indication that the Neupogen had “mobilized,” i.e., was doing its job to send my white blood count to the moon. I could expect pain my lower back and sternum, major sites where stem cells grow. Went home, took a nap, then walked to Friday night services and dinner with friends. All was well except for a strange feeling of my feet being very heavy, and I think I was a little dizzy—but that might have been all in my head. I had a lovely evening but was distracted by worrying if and when those symptoms might start, so left early and slept really well.
At the hospital, C. told me that the recipient was about to start the transplant preparation regimen that same day—chemo and radiation to destroy her immune system in preparation for the healthy stem cells that would rebuild it. No turning back after that for either of us. So this was the last thing I expected to hear on the other end of the phone:
“I’m so sorry. They want to postpone the donation.”
Seems the recipient was on a drug regimen to improve her condition, and a few more weeks would help even more. Was I available next month? Of course, whenever needed. But I was all psyched to get it done already. And my friends were psyched for me; now I’d have to tell them it was another false alarm. Boy, did I feel petty. Someone else’s life was at stake, and the only thing I could think about was my own schedule and Facebook status.
But that really was all I could think about.
Before I could continue to dislike myself and add to the long list of items requiring breast-beating in a few days, the blood center lady continued: “There’s another option. You could donate now, and they’ll freeze your stem cells and transplant them in a month.”
Yes, yes, I want to do it this way, I said, even before she finished the sentence. Sleep on it, she suggested. So I pondered, and waffled: October, without the added complication of the Jewish holidays, was more convenient, and it also would be a little more dramatic in Grey’s Anatomy style: donation done, they’d whisk away the bag of cells and new life would start flowing through her veins within hours. Cut to commercial. Yeah, right.
One of the things I hate most, aside from anchovies and cigarette smoke, is indecision—but I was completely stumped, even more so that the situation warranted. Either option was fine with respect to the recipient’s heath, or they wouldn’t have left the choice up to me. But at that moment, maybe because Yom Kippur was right around the corner, I was desperate to make the decision for the right reason and not just the most expedient. I spoke to a number of very wise people, and interrogated the blood center: are you sure frozen cells are OK? Yes, and she was deemed an excellent candidate for that process, not always the case.
Then a friend posed a question: will the recipient be told about your advance donation or find out only when she was ready for the transplant? I thought about how this woman might feel, twice turned away at the edge of a possible new future. If she knew my cells were ready the second she was, no need to wait or wonder if I’d lose patience and decide not to donate, maybe this would give her even more hope and strength.
I confirmed that she would know in advance, and it became a much easier decision. On Friday I’ll get the first Neupogen injection, and everything is set for next week as originally planned.
I took these notes last Monday morning:
Sitting in the hospital’s cancer treatment center waiting room waiting for the donor liaison, who will shepherd me through repeat blood tests. Other people here with colorful scarves on their heads, walking in and out wearing surgical masks and beautiful but obvious wigs, some smiling, sone stony-faced. And others, like me, whose reason for being present can’t be guessed from appearance alone.
Then C. arrived, and I had stop writing. And it seemed there wouldn’t be much of interest to say until the donation, because the tests were uneventful—5 more vials of blood (a breeze!—I think I’m finally cured of my fear of needles), another nurse poking the crooks of my arms to assess the state of my veins (could they have changed from a few months ago?), more of the same questions about travel, drug use, and sexual history (just as boring as back in May). “So this is really, finally going to happen?” I asked. “Yes,” said C. “100% sure.”
The blood bank head nurse also gave me a little tour of where I’d hang out all those hours, a subterranean but cheery room bustling with energy and purpose. She explained that a new blood bank was being built, but for now the only window was a painting donated by a former patient, a beach scene in tropical colors that would be visible from my bed, the one next to the big, noisy Frankensteinian filtering device. (Otherwise known as an apheresis machine, a.k.a. thing that performs miracles. I made a mental note to ask someone to explain, over the course of the 8 hours I’d be tethered, exactly how it knows which are the stem cells.) It was reassuring to see that exact spot, and be reminded that this event was routine for everyone except me. (In the next bed was a bored-looking teenager hooked up to an iPod and cell phone as well as a central line. The nurse explained that she was getting an infusion to treat a neurological disease. All in a day’s work.)
The nurse also reminded me that I wouldn’t be able to go to the bathroom for 4 hours, so not to drank any coffee beforehand. I think this aspect of the experience makes me more nervous than anything else. But I’ll live.
By then the blood tests had been rushed through, and C. reviewed them: no change, all was normal. He also volunteered the weight of the recipient, more than mine, and explained that this meant a large number of stem cells were needed and so the donation might take the full two days—unless my blood decided to flow quickly. An anticoagulant would encourage the process.
I got back home and reviewed the facts; tests OK, person in charge said it would definitely happen. I had told some friends about the whole saga, but not everyone. This seemed a good time to share the news on Facebook.
I posted, and comments started coming in—yes, it’s amazing.
And then the phone rang, a familiar area code.
In just a few hours I head back to the hospital for a re-do of all those blood tests from last May, just in case I met up with a nasty mosquito during a recent weekend trip down the Amazon. (Not.) Assuming all is well, my first of five Neupogen shots will be on 9/24. After five days of injections, my stem cells will be practically leaping out of my bones, and hopefully not causing any discomfort in the process.
The next three injections were to be given at my home by a visiting nurse. Inconveniently, I have plans to be elsewhere for part of the day on 9/25. Someone else could give me the shot, which is subcutaneous and not intravenous (i.e., the kind of needle you stab yourself with in the arm or thigh, like a diabetic does with insulin), but that person would first need to submit credentials to the donation center and be thoroughly vetted. Of course this makes sense, but is also a big pain. The other option, which a few doctor friends convinced me is perfectly feasible, is to give myself the shot. Needles give me the creeps, but I opted to go this route after a dozen phone calls failed to identify a suitable injection-giver. They’ll teach me how to do it at the hospital, and send me home with a cooler full of drugs and gel packs. One of the friends I’ll be with is a doctor herself, so can supervise.
Or I might decide to skip the event. I have 11 more days to decide; it wouldn’t be the end of the world.
A few days ago, exactly one month since I heard from the bone marrow donation people, I emailed for an update. I steeled myself for bad news; if the recipient was sick in July, what were the odds that she’d be strong enough to withstand the procedure just one month later? I prepared to mourn the end of this glimpse into how small the universe really is, and the life of a woman whose name I don’t know, but who has become a profound influence. (What would that mourning feel like? I know the pain of losing parents, a hole of grief one blindly, painfully escapes over time. How much does it hurt to lose something you never had in the first place?) Over the past few weeks I tried to protect myself, practicing for pain by imagining the worst and then ignoring it entirely.
The real answer made me giddy:
“Well, you must have some kind of intuition going on, because I just received an email that the patient may be ready to proceed.”
It was the day before Rosh Hodesh Elul—what better moment to begin a journey of change and renewal? Yes, I’m still willing to donate, I answered when they asked (as they must before every stage; I can withdraw at any time, no questions asked. But if I turn back too late in the process, the patient will die.) Yes, any day is good—well, actually not. I’m kind of busy during the weeks of the Jewish holidays, and don’t want to run the risk of getting exhausted the week before, either.
They got back to me today with new dates at the end of September, right before Simhat Torah. I had a feeling all along that it would happen over Shavuot. You couldn’t script it more perfectly—harvesting the stuff of life during the holiday of the harvest.
I still need more blood tests to confirm that I haven’t caught anything nasty over the past two months. It’s still not a sure thing.
Once again, a phone call in the middle of the day as I sit at my desk. I recognize the number; my stomach drops. This can’t be good. Two weeks ago, unable to wait a second longer for an update, I emailed the donor center. “We have no news about a delay in collection,” they answered. So I began to count down the days, imagining what DVDs I’d watch during those hours when I wouldn’t have use of my hands. I began to smile all the time. Suddenly it didn’t matter what else happened in the world; life was good.
I pick up the phone: a familiar neutral but cheery voice. “I’m so sorry, but your recipient had a relapse.” Catch-22: the illness has to be grave enough to require a transplant, but not so bad that the process will kill her. It’s not cancelled, however, just postponed to some unknown time. Am I still interested in donating? Of course. Thank you, we’ll keep you posted.
I knew this might happen—the possibility was mentioned on every sheet of donor literature I received—but I still feel horrible. I want her to be OK. I want to fix her. I have no idea who or where this woman is, whether she has a family, kids, is nice or mean, hopeful or desperate. All I do know is that God is being very annoying. I have something she needs—but now, all of a sudden, she can’t receive it. I guess life often works this way; we love someone but they’re not ready to reciprocate, or we possess talent but not means. But in most cases we can find tools to help us change and discover how to accept those gifts. In this instance, the recipient and I are both powerless. All we can do—all I can do—is be grateful that science and circumstance brought us this far, and that the story is not yet over.
So I think it’s really going to happen. I went for the physical, a long but not unpleasant experience: about 20 more vials of blood and other bodily fluids taken, interview with a doctor, hundreds of questions answered on a dozen forms (hey, do I look like someone who might have had sex with a prostitute?! but I know they have to ask), EKG, chest x-ray, no-nonsense nurse flicking her fingers repeatedly into the crooks of my arms to assess the state of my veins. It was almost a fun way to spend the afternoon because I was accompanied through these various trials by two staff members from the local marrow donor program: S., a young nurse on her way to getting a degree in public health and C., an endearingly chivalrous man who opened doors and offered to bring me food and drink every ten minutes or so. It’s been a long time since I went to the doctor with anyone but myself, and so was a nice and nurturing experience. And after the nurse pronounced my veins in good shape (very important, otherwise I’d need a central line for the donation and would have to stay in the hospital overnight), they both applauded. Never before has the state of my veins elicited a standing ovation, nor will it probably do so ever again.
Then I waited a week and tried not to think about it, an impossible task. The following Tuesday I received a phone call: we’re so sorry, some of your blood samples got contaminated. So I rushed back to the hospital to give more, and C. mentioned that a few of my results had been “flagged.” But no need to worry. Of course I did, so he said a doctor would call to explain. A sleepless night followed.
The next day C. himself called to say that it was a mistake, my results were fine. And, with that, I was pronounced fit to donate.
So now I wait a month and a half. It doesn’t seem quite real, and I alternate between being certain I’m blowing the whole thing out of proportion (it’s just a few hours out of my life, and plenty of others have done it before; I’m nothing special), and being completely overwhelmed with awe.
On Thursday I learned that I am indeed a perfect match to be a bone marrow donor to a perfect stranger, a woman. As proof that God really does have a sense of humor, and good timing, I got the news in a voicemail message left on my phone at the exact same instant I was having blood drawn at my doctor’s office during a routine checkup. (As the events at Sinai demonstrated, important pieces of information are most effectively delivered with special effects.) I heard the phone buzz and for a second thought—as I had every time over the past month and a half when seeing caller ID from this particular area code—is this it? “It,” I already decided, was no. The odds were too high (about 1:20,000), and how chutzpadik to assume I was perfect? Besides, I didn’t want to get all excited and then be disappointed.
But then I stood on a windy street corner and called back, and heard yes. I was both surprised and not; I guess a little part of me concluded all along that I’d be the one. On Friday I received a big FedEx box containing a million papers to read and sign and a DVD explaining the procedure, an oddly charming glorified filmstrip complete with earnest doctor without any acting ability as narrator.
If all goes well and I pass the physical, I’ll be donating PBSCs, peripheral blood stem cells. They carry the ability to generate new blood cells, and until recently could only be harvested from bone marrow, a surgical procedure involving pain and a hospital stay. A newer method, still experimental but now the most common way to donate, allows these cells to be extracted from circulating (“peripheral”) blood. For five days the donor is injected with filgrastim, a.k.a. granulocyte colony-stimulating factor (G-CSF) a.k.a. Neupogen, a drug to stimulate stem cell growth, and then undergoes a procedure where all the blood in one’s body—a few times over—is filtered to remove stem cells, and then returned. Out one arm and in the other.
Assuming I do pass the physical, the procedure won’t take place until July or later because of a drug trial the recipient is on. In the meantime, she has to stay both sick and healthy enough to make a transplant appropriate, a scary balancing act.
Definition of “anticlimax”: my trip to the lab last Monday for blood tests to determine if I can get to the next stage of being a possible bone marrow donor. I barely slept on Sunday night. It made no sense; this isn’t a competition, the result will have no impact on my health, and it’s just a few vials of blood. Ordinary. But symbolically it felt like a whole lot more.
The lab was a small, dismal room in an office building. The staff consisted of one woman doing double duty as office manager and phlebotomist who seemed to move at the speed of light from shuttling people in and out of the crowded waiting room to staring, Zen-like, at everyone else who complained about the wait. “They told me to be here at 8! It’s now 9! Harummph!” I had put an “away” message on my email, so reminded myself that I was in no rush even as the minutes ticked away.
Finally it was my turn. “Is this your first time here?” she asked.
“Yes,” I answered, bending over the counter so I could lower my voice. Because there was no buffer zone at all between the Front Desk of Inquisition and the rest of the waiting room, we had spent the morning inadvertently learning about the medical conditions of all our fellow patients. Although I was proud to be a possible bone marrow donor, I didn’t think it was anyone else’s business.
“Bone marrow test? Did they send you a package? Oh, wait, here it is!” she yelled from under the desk, loud enough to be heard in New Jersey. “Room 2.”
Room 2 was the size of a closet. I sat down and she opened the FedEdx box, extracted a stack of documents and vials wrapped in bubble wrap, and gave me a form to sign. I didn’t even feel the needle go in, and suddenly five vials were filled and shoved back into the box. She handed me an envelope with my name and “Thank you! [smiley face]” written on the front. Inside was a brochure reiterating much of what I had learned online (minuscule odds of being chosen, up to two months before you’ll hear back, etc.).
And that was it. I walked out into the rain back to the bus stop, and attempted to put it out of my mind. (But I was reminded again this morning when I noticed a nasty bruise in the crook of my arm.)
Another observation about this potential bone marrow donor thing. I don’t think I fully conveyed, in the last post, my overwhelming feeling of surreality (is that a word?). Perhaps if the woman from the registry had sounded a little hysterical—but her voice, although cheery, was way too calm. I hung up the phone and yearned for Superman to burst in through a window and bellow the message through a megaphone.
I realized, later on, that I’m used to sudden bad news. I’ve had a lot more experience with it. The phone call about an unpromising lab test, or a death—I know, as do most adults, that feeling of being punched in the stomach, robbed of breath. I understand the recovery time involved, during which you live in a world devoid of color or music where everything is muffled, grey.
Bad news arrives quickly more than it grows into being. Even situations that devolve over a long slide, starting out bleak and ending up dire, usually feature one moment when the bottom seems to fall out entirely. One second there’s hope, then it’s gone. The length of time in which hope is nurtured doesn’t necessarily make it any more true or enduring.
But joy takes its time. Rarely does true love appear at first sight. Birth requires pregnancy; marriage, engagement. Great happiness generally grows out of many instances of smaller happiness, and they add up until one day you realize that things are really wonderful. I guess the preliminaries to joy aren’t always all happy—but there are still preliminaries. Joy does not generally sneak up.
So I think that’s why this potential bone marrow thing has been so disarming, in the best possible way. One minute I was a normal person, and the next—a normal person who might be able to save a life. I feel completely unworthy of this honor, which I know makes no sense. We are all our brothers’ and sisters’ keepers.
I got a phone call on Wednesday afternoon. “You registered with the National Marrow Donor Program in 1999,” said the woman on the other end. “We’d like you to know that you matched to be a bone marrow donor,” she continued in a cheery voice.
In 1999 I had just joined my synagogue, and knew only a handful of people. A member urgently needed a bone marrow transplant, and a drive was organized. I had never paid much attention to that sort of thing; I was pretty self-centered, but was beginning to learn what it really meant to be in a community, to step up and do my part. So, with no small measure of self-congratulation, I showed up one evening and got my cheek swabbed. I remember the moment clearly, because I struck up a conversation with the woman who took all my info. I asked if she was a member. Yes, she answered, and told me her name; she was the wife of the former rabbi, and I was very embarrassed not to have recognized her. She laughed—you’re new, no big deal! A pleasure to meet you. Is everyone here so nice and gracious? I wondered.
For a few years I got an occasional newsletter in the mail from the registry, but that stopped after awhile and I completely forgot about it—until the call on Wednesday. (I didn’t believe her at first, and figured it was some weird telemarketing scan.) I was utterly shocked and ecstatic, but don’t yet know if I can donate; blood tests tomorrow will determine the answer. The odds of a non-family-member getting to this stage are about 1 in 20,000, and for those matches, 1 in 12. According to the NMDP website, www.marrow.org, most donors match with a number of people at first, but further tests are needed to find the best choice.