So I sat down to get this blog back on topic and write about my new student, a little girl preparing for her Bat Mitzvah next fall—the first non-adult I've taught—and how brilliant and quick she is, with a beautiful, strong voice that belies her tiny stature, and an almost scary ability to remember tunes as soon as she hears then (or maybe all kids are like this, and it's just we adults who are a little slow?)—when suddenly:
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.
Sunday, November 14, 2010
Monday, November 08, 2010
961. Storybook
So—back to the topic of this blog, sort of. Last week I led two shiva minyanim, both for a dear friend whose mother had passed away very suddenly. Despite the shock, this family was able to speak and let others into their grief—functional, unlike some others I've encountered who were completely frozen in pain. My friend shared wonderful stories of traditions that created memories and a foundation for everything that followed in her life; her words invited us all into that warm and loving place for a few minutes. It was a little gift of a kind of childhood for which I didn't yearn back then, but only later on when I figured out that other peoples' lives were different from mine: trips to new places, laughing crowds, patterns and rituals that continued with the expectation of never ending.
I would not change the way I grew up for the world. Yes, there was yelling and death and a small, often contentious little unit of us that never travelled further than the Bronx Zoo, but also a lot of love amidst the strife. It was rarely expressed in a storybook way, with big holiday dinners or group sing-alongs (although I'm working on an essay right now for my writing class about songs my father sang to me when I was really, really little, some of which have been re-appearing in popular culture and dredging up long-forgotten Russian melodies from the dustier parts of my brain). But I knew with certainty that my parents, aunts, and uncles, for the brief period I had them, had hearts bigger than the universe, and I was in the center of them all.
My friend's siblings span the spectrum of Jewish observance: far right, middle, and disdain for the whole business. And in their grief, differences became more powerful than all they shared: the outer two factions would not help those of in the middle (my friend and I) form a minyan. They found enough people on the nights I led, but not the others. This caused everyone a lot of pain, although not enough to cross boundaries of observance. Which would have been a betrayal of memory and tradition as well, I guess, so it really was a no-win situation. It also reminded me that even storybook lives have their torn pages.
I would not change the way I grew up for the world. Yes, there was yelling and death and a small, often contentious little unit of us that never travelled further than the Bronx Zoo, but also a lot of love amidst the strife. It was rarely expressed in a storybook way, with big holiday dinners or group sing-alongs (although I'm working on an essay right now for my writing class about songs my father sang to me when I was really, really little, some of which have been re-appearing in popular culture and dredging up long-forgotten Russian melodies from the dustier parts of my brain). But I knew with certainty that my parents, aunts, and uncles, for the brief period I had them, had hearts bigger than the universe, and I was in the center of them all.
My friend's siblings span the spectrum of Jewish observance: far right, middle, and disdain for the whole business. And in their grief, differences became more powerful than all they shared: the outer two factions would not help those of in the middle (my friend and I) form a minyan. They found enough people on the nights I led, but not the others. This caused everyone a lot of pain, although not enough to cross boundaries of observance. Which would have been a betrayal of memory and tradition as well, I guess, so it really was a no-win situation. It also reminded me that even storybook lives have their torn pages.
Tuesday, November 02, 2010
960. She jumped!
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.
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.
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:
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.
- 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.
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.
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.
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 |
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.
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.
Sunday, September 26, 2010
954. Handicapped bathroom
Yesterday, as planned, 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 these friends, whom I hadn't seen in about 25 years, was a doctor, and she agreed to supervise as I self-injected.
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, even more so now, didn't find it funny at all, which made me laugh even more. I quickly composed myself and laid all the injection paraphernalia atop the toilet tank.
I was able to fill the needle with medicine, but was very 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 was 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 pressing. She was already gone by the time I pulled the needle out. (She did eventually laugh about the whole thing later that afternoon.)
I felt just fine afterwards—tired, a few twinges in my legs. 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.
Tomorrow, 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 morning at 8, 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?)
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, even more so now, didn't find it funny at all, which made me laugh even more. I quickly composed myself and laid all the injection paraphernalia atop the toilet tank.
I was able to fill the needle with medicine, but was very 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 was 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 pressing. She was already gone by the time I pulled the needle out. (She did eventually laugh about the whole thing later that afternoon.)
I felt just fine afterwards—tired, a few twinges in my legs. 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.
Tomorrow, 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 morning at 8, 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?)
953. Dart
On Friday morning I left Sukkot services early and, lulav bag in hand, got on the bus 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 headed 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 with a free movie pass tucked in and, best of all (since it was 2:00PM by then and I hadn't even had breakfast) a big dark chocolate Hershey bar. I ate half, followed by a slightly healthier omelet. K. explained that the anticoagulant administered during the donation would leach my body of calcium, 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.
"Sukkot is a holiday of the body," observed the rabbi at services on Thursday. On the High Holy Days we immerse fully in our spiritual lives to contemplate past and future—but on Sukkot we can actually touch the fruits of those ideas. We grasp and shake the lulav, inhale the aroma of the etrog—in mystical interpretation, representations of the spine, eyes, mouth, and heart—and connect to heaven and earth through a very physical ritual. Another reason why Tuesday, the sixth day of Sukkot, seems like a good time for the donation.
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 with a free movie pass tucked in and, best of all (since it was 2:00PM by then and I hadn't even had breakfast) a big dark chocolate Hershey bar. I ate half, followed by a slightly healthier omelet. K. explained that the anticoagulant administered during the donation would leach my body of calcium, 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.
"Sukkot is a holiday of the body," observed the rabbi at services on Thursday. On the High Holy Days we immerse fully in our spiritual lives to contemplate past and future—but on Sukkot we can actually touch the fruits of those ideas. We grasp and shake the lulav, inhale the aroma of the etrog—in mystical interpretation, representations of the spine, eyes, mouth, and heart—and connect to heaven and earth through a very physical ritual. Another reason why Tuesday, the sixth day of Sukkot, seems like a good time for the donation.
Wednesday, September 22, 2010
952. 99.9%, part 2
(Continued from here.)
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. No need for an answer right now. 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. I lost a night's sleep, and realized that patience was something I needed to work on in the new year.
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. On the same day this last bit of drama unfolded, I was also asked to read part of the Yom Kippur morning haftarah. This was one of the verses:
The Lord will guide you always.
He will slake your thirst in parched places
And give strength to your bones.
You shall be like a watered garden,
Like a spring whose waters do not fail.
—Isaiah 58:11
So maybe now, and not next month, is the right time for that added strength in my bones, so they can become a spring.
Hag sameah, and wishing everyone a sweet and happy Sukkot.
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. No need for an answer right now. 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. I lost a night's sleep, and realized that patience was something I needed to work on in the new year.
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. On the same day this last bit of drama unfolded, I was also asked to read part of the Yom Kippur morning haftarah. This was one of the verses:
The Lord will guide you always.
He will slake your thirst in parched places
And give strength to your bones.
You shall be like a watered garden,
Like a spring whose waters do not fail.
—Isaiah 58:11
So maybe now, and not next month, is the right time for that added strength in my bones, so they can become a spring.
Hag sameah, and wishing everyone a sweet and happy Sukkot.
Monday, September 20, 2010
951. 99.9%, part 1
I took these notes last Monday morning:
_____
9/13, 10:30am
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, aka 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 wonder if the rabbis ever devised a prayer for fast-flowing blood? Maybe one of those psalms that compare life to a swift stream would do the trick.)
(It's strange to know nothing more about a person than age, illness, and number of kilograms. When I told some friends, they got worried--she needs to lose weight! It can't be good for her health! Then we considered the possibility that she was taller than I was, as is the case with much of the world. And then we realized how ridiculous we sounded.)
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. (Continued here.)
_____
9/13, 10:30am
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, aka 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 wonder if the rabbis ever devised a prayer for fast-flowing blood? Maybe one of those psalms that compare life to a swift stream would do the trick.)
(It's strange to know nothing more about a person than age, illness, and number of kilograms. When I told some friends, they got worried--she needs to lose weight! It can't be good for her health! Then we considered the possibility that she was taller than I was, as is the case with much of the world. And then we realized how ridiculous we sounded.)
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. (Continued here.)
Sunday, September 19, 2010
950. High Holy Days 5771, part 3
I hope everyone had an easy fast. I did; just a little thirsty, and not hungry at all. (Although my stomach did begin to rumble in the morning during Sh'ma Koleinu, which I hope the microphone did not pick up.) I'm sure my relative comfort was due in part to the three large meals I had the day before, and also because I was simply too focused to want to stop and eat. I know all the halakhic reasons for fasting, and they make perfect sense, but I think I finally, truly understand why we do it. Meals, even when experienced alone, are social events. You're ether with and talking to people, contemplating them, or buried in a magazine, fork in the other hand, reading about how much better other people's meals are than yours. Rarely is eating a thoroughly solitary experience during which one ponders future life and death, as is our task on Yom Kippur. (If we had to think about those things at meals, we'd probably lose our appetites.) Community surrounds us like a cocoon on Yom Kippur to create a safe space in which we can experience the deepest, most intensely private prayer--much less likely to happen if we had to keep interrupting ourselves to eat, especially in the usual, social way. There's also the convenient side benefit of hunger, lightheadedness and the altered state of feeling empty mentally as well as physically--all the better to allow prayer to flow unimpeded.
Whatever the reason, I did have a tzom kal [easy fast], and a few of those scary but good naked moments: God, I've run out of words to enumerate how I've screwed up. Please just extract them from me. I know it's painful surgery without anesthesia. That's OK.
I don't have much to write about singing this Yom Kippur. There were neither catastrophes nor unintended drama (aside from a few minutes at the beginning of Shaharit at Big, Fancy, New Theater when I couldn't hear the musicians, who were playing a little too sensitively for the world-class sound system to pick up. After some dueling key signatures between bimah and band, they turned up the volume and all was well.) I tried to wring out every bit of myself, and also remembered to breathe. I felt like I was having a conversation with all the people I couldn't join for dinner, a thousand friends in the same boat. It was a two-sided dialogue even though I was way up front, their presence the most comforting thing in the world, and the answer I was looking for. Later that the day at Minha at the Usual Church, I quickly realized I wouldn't use up my remaining energy; great stores of fumes remained even after the fuel tank reached "E". But I tried.
I spent the entire Yom Kippur with the same rabbi, which is unusual (because I was switched to Big, Fancy theater at the last minute for Shaharit. Although a million other reasons could be at play, I think it's because someone was suddenly unable to chant half the haftarah, so I was asked to fill in. Which was also fun—although there sure are a lot of words to fit into the melody in that last paragraph of Yom Kippur-specific blessings.) It was nice to have the privilege of standing at this rabbi's side throughout, her continued presence welcome stability, because I hit the jackpot this year—four services over the Yamim Nora'im at four different locations. Usually I get to lead in one location more than once—not this time, although I felt equally at home everywhere, having logged lots of prayer in each place. I was reminded that Judaism is a religion of time, not space—with the right intention, anywhere can be holy. This year the entire Upper West Side (and a little below) was my synagogue, its walls defined by the crowds on Broadway, oblivious to the holiday but still sharing it with me as I walked home after Kol Nidre on Friday night, as well as the tall stained glass windows of the sanctuary where we usually pray, hiding the outside world but letting in just enough light so that we couldn't forget it, either.
Whatever the reason, I did have a tzom kal [easy fast], and a few of those scary but good naked moments: God, I've run out of words to enumerate how I've screwed up. Please just extract them from me. I know it's painful surgery without anesthesia. That's OK.
I don't have much to write about singing this Yom Kippur. There were neither catastrophes nor unintended drama (aside from a few minutes at the beginning of Shaharit at Big, Fancy, New Theater when I couldn't hear the musicians, who were playing a little too sensitively for the world-class sound system to pick up. After some dueling key signatures between bimah and band, they turned up the volume and all was well.) I tried to wring out every bit of myself, and also remembered to breathe. I felt like I was having a conversation with all the people I couldn't join for dinner, a thousand friends in the same boat. It was a two-sided dialogue even though I was way up front, their presence the most comforting thing in the world, and the answer I was looking for. Later that the day at Minha at the Usual Church, I quickly realized I wouldn't use up my remaining energy; great stores of fumes remained even after the fuel tank reached "E". But I tried.
I spent the entire Yom Kippur with the same rabbi, which is unusual (because I was switched to Big, Fancy theater at the last minute for Shaharit. Although a million other reasons could be at play, I think it's because someone was suddenly unable to chant half the haftarah, so I was asked to fill in. Which was also fun—although there sure are a lot of words to fit into the melody in that last paragraph of Yom Kippur-specific blessings.) It was nice to have the privilege of standing at this rabbi's side throughout, her continued presence welcome stability, because I hit the jackpot this year—four services over the Yamim Nora'im at four different locations. Usually I get to lead in one location more than once—not this time, although I felt equally at home everywhere, having logged lots of prayer in each place. I was reminded that Judaism is a religion of time, not space—with the right intention, anywhere can be holy. This year the entire Upper West Side (and a little below) was my synagogue, its walls defined by the crowds on Broadway, oblivious to the holiday but still sharing it with me as I walked home after Kol Nidre on Friday night, as well as the tall stained glass windows of the sanctuary where we usually pray, hiding the outside world but letting in just enough light so that we couldn't forget it, either.
Monday, September 13, 2010
949. Dog with a log between its teeth
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; I'll need to leave second day Sukkot services early in order to get to the hospital on time. 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 shots were to be given at my home by a VNS nurse. Inconveniently, I have plans to be elsewhere on 9/25. I usually stay close to home on Shabbat but this was a special occasion, in the works for awhile. 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 dear doctor friends convinced me is perfectly feasible, is to give myself the injection. 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, which will require stamina and some running around, and just lounge around at home that weekend. I have 11 more days to decide; it wouldn't be the end of the world, and would probably be the spiritually saner course of action. I was originally set to read Torah on the second day of Sukkot, too, but some people far wiser than I suggested I focus my kavannah on the impending donation rather than on vowels and trope. To be honest, I haven't been able to focus on much of anything for weeks. I've cranked out some less than brilliant work, paid bills, gone to the gym, all the usual stuff. But a good chunk of my brain is floating in a fog somewhere above. Often it feels real, other times utterly impossible and I wait to wake up, but then it's real once again and all I can do is smile and marvel, or sing. Rosh Hashanah couldn't have come at a better time.
The other day I wondered if this is how parents or pregnant women might feel, a mixture of awe and a massive sense of responsibility. (How I wish I could ask my mother; oddly, coincidentally, I am now the same age as she was when she had me.) But then I decided it fell into a category all its own. Unlike a child, we are both responsible; the recipient of my stem cells chose to place her trust in a complete stranger. I can't imagine a braver act. Maybe I'm reacting as a surgeon or cop might, or that guy on the trapeze who catches the other guy by the wrists after he flies through the air. There is no way to sufficiently rise to the responsibility of embracing so much trust. All a person can do is keep living and breathing and doing her best, and God will take care of the rest.
On the way to services the other morning I passed by a big, scary-looking man walking an even larger scary-looking dog. The dog was also armed, in case they were not imposing enough, and held a log, the trunk of a small tree, in its jaws. Man and dog trotted past, and I gave them a wide berth on the sidewalk. And then they were gone, no harm done. I think that's how the donation will feel: some shock, excitement, a little fear, and then--done. Meanwhile, I finally fixed the alarm clock in my bedroom to display the actual time after years of keeping it set to seven minutes ahead, or maybe it was six, which I thought helped stop me from being late and forced me to rush, since I could never be sure of the actual time. But in reality I just subtracted six or seven and went about my business. Now, instead, I will be forced to focus on the present moment alone.
The next three shots were to be given at my home by a VNS nurse. Inconveniently, I have plans to be elsewhere on 9/25. I usually stay close to home on Shabbat but this was a special occasion, in the works for awhile. 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 dear doctor friends convinced me is perfectly feasible, is to give myself the injection. 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, which will require stamina and some running around, and just lounge around at home that weekend. I have 11 more days to decide; it wouldn't be the end of the world, and would probably be the spiritually saner course of action. I was originally set to read Torah on the second day of Sukkot, too, but some people far wiser than I suggested I focus my kavannah on the impending donation rather than on vowels and trope. To be honest, I haven't been able to focus on much of anything for weeks. I've cranked out some less than brilliant work, paid bills, gone to the gym, all the usual stuff. But a good chunk of my brain is floating in a fog somewhere above. Often it feels real, other times utterly impossible and I wait to wake up, but then it's real once again and all I can do is smile and marvel, or sing. Rosh Hashanah couldn't have come at a better time.
The other day I wondered if this is how parents or pregnant women might feel, a mixture of awe and a massive sense of responsibility. (How I wish I could ask my mother; oddly, coincidentally, I am now the same age as she was when she had me.) But then I decided it fell into a category all its own. Unlike a child, we are both responsible; the recipient of my stem cells chose to place her trust in a complete stranger. I can't imagine a braver act. Maybe I'm reacting as a surgeon or cop might, or that guy on the trapeze who catches the other guy by the wrists after he flies through the air. There is no way to sufficiently rise to the responsibility of embracing so much trust. All a person can do is keep living and breathing and doing her best, and God will take care of the rest.
On the way to services the other morning I passed by a big, scary-looking man walking an even larger scary-looking dog. The dog was also armed, in case they were not imposing enough, and held a log, the trunk of a small tree, in its jaws. Man and dog trotted past, and I gave them a wide berth on the sidewalk. And then they were gone, no harm done. I think that's how the donation will feel: some shock, excitement, a little fear, and then--done. Meanwhile, I finally fixed the alarm clock in my bedroom to display the actual time after years of keeping it set to seven minutes ahead, or maybe it was six, which I thought helped stop me from being late and forced me to rush, since I could never be sure of the actual time. But in reality I just subtracted six or seven and went about my business. Now, instead, I will be forced to focus on the present moment alone.
Sunday, September 12, 2010
948. High Holy Days 5771, part 2
The holidays, so far, have been calm and ecstatic, like fireworks contained in a careful, hand-made box. It feels like we--rabbis, congregants, musicians, me--have figured out how to breathe in safe places despite the unsettled turn of world events these past few months, and so are free to enjoy the music and try to renew no matter what. Or maybe we just know our parts a little better now. And it's two days post-Rosh Hashanah and, miracle of miracles, I do not have a cold (knock wood, p'tui p'tui, evil eye begone! and all those other things other people's grandmothers used to say), reason enough to exult and relax. On Tuesday I have a Yom Kippur rehearsal, since this year I'm back to leading both Shaharit and Minha, followed by copious amounts of deadline work until the edge of Kol Nidre. But I'll be fine. And tomorrow morning, repeat blood tests to make sure all is well for the bone marrow donation (more about that in another post). A week overflowing with the sacred and ordinary, no better preparation for approaching those open gates.
Meanwhile, one of my favorite voices of all time (aside from the cantor at my synagogue) sings a song my father used to, a tune buried so deeply in my past that it took a few hearings of this link forwarded by a friend to understand why it made me shiver and become unbearably sad--and happy, as well, the echo of childhood and sensation of being embraced by the compact, muscular arms of an off-key, deeply resonant bass with a rakish mustache and always a few Hopjes candies in his pocket:
Paul Robeson, Song of the Plains
Meanwhile, one of my favorite voices of all time (aside from the cantor at my synagogue) sings a song my father used to, a tune buried so deeply in my past that it took a few hearings of this link forwarded by a friend to understand why it made me shiver and become unbearably sad--and happy, as well, the echo of childhood and sensation of being embraced by the compact, muscular arms of an off-key, deeply resonant bass with a rakish mustache and always a few Hopjes candies in his pocket:
Paul Robeson, Song of the Plains
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