Sunday, October 10, 2010

959. A list

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.

958. Post-donation

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.

During Hallel on Shemini Atzeret, the cantor sang a beautiful, slow melody I'd never heard before to these lines of Psalm 116:

Be at ease once again, my soul
For the Lord has dealt kindly with you.
He has delivered me from death,
my eyes from tears, my feet from stumbling.
I shall walk before the Lord in the land of the living.
I kept my faith even when greatly afflicted, even when
in panic I cried out: All mortals are undependable.

God did not deliver me from tears at that moment; I wasn't sure if they were from joy, awe, or something completely different. I became the transplant recipient, caught between death and life and trying not to panic. I prayed I would prove her wrong about all mortals being undependable, and that she heard the prayers so many friends in my community had sent out.

The next day was Shabbat Bereshit. After talking to a friend about how many people were involved in this one miracle—everyone from the scientist who invented the apheresis machine, to the nurse who connected the collection bags, to the coordinator at the blood center who put thorough the paperwork, and the list goes on and on, hundreds of people trying to save the life of a single stranger—he observed that it was just like the parasha itself, the beginning of a story that repeats as soon as we finish telling it. Constant creation, routine and amazing. I feel like I've glimpsed angels in the back room, a new part of God that had been hidden to me. And have received, as another friend put it perfectly, the gift of being able to turn my life into someone else's path.

957. Donation, day 2

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. 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.

Apheresis machine, day 2
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.

956. Donation, day 1

(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.

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.

"Those are the stem cells," said C. "Your bones are literally heavier now." (Just as the verse from the Yom Kippur haftarah predicted.)

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.

Saturday, October 02, 2010

955. Done!

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.)

A longer description to come soon. Hoping everyone had a joyous Simhat Torah filled with dancing, singing, and all sorts of new beginnings.