Monthly Archives: September 2010

17. 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 after the holiday and many more hours of sleep. Wishing all who celebrate a  joyous Simhat Torah filled with dancing, singing, and all sorts of new beginnings.

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16. Tomorrow

The nurse arrived bright and early again this morning to administer Neupogen shot #4 and leave me with two more Band-Aids on my right arm. The soreness, a dull, transient ache that moves between shoulders, thighs, and the small of my back, with an occasional joint twinge (neck, wrist), is nowhere nearly as bad as I feared. I guess this is bone pain, but could swear the discomfort is directly in my muscles. It reminds me of times when I fell asleep on the couch, or ran too far while wearing the wrong kind of shoes. It did get annoying enough this evening to break out the Tylenol with codeine, but doesn’t hold a candle to food poisoning, root canal, or post-surgical kinds of pain, all of which I know a little too well. I wish the NMDP would plaster an alert on their website: “It doesn’t hurt much at all! Honestly!” A number of people have told me they would never donate because of the pain, an unfortunate misconception often spread by the media because it makes for juicier plot lines.

(A word about misconceptions. That’s why I started this blog, as explained in the sidebar: to add to the body of donor stories and perhaps de-mystify the procedure for someone else. Initially I thought that donation entailed a big Roto-Rooter of the bones; I might have been frightened away entirely if not for those realistic first-person accounts. How dare I write this stuff, a nasty person who wouldn’t leave his or her name tried to comment here earlier today. It’s all about the recipient; I should shut up, be humble, and not tell a soul. I know that good deeds kept secret are the best kind, but also that we are responsible for one another and need to share knowledge and education about those mitzvot, or else we won’t learn how to do them. Other bloggers helped me understand, and I want to return the favor.)

OK, see you all when it’s over.

15. Neupogen, days 2 and 3

Yesterday I spent part of the day with old friends at a place where a nurse could not come to give me the second Neupogen shot. One of those friends, whom I hadn’t seen in about 25 years, was a doctor, and she agreed to supervise my self-injection.

Soon as I arrived, we headed into the women’s handicapped-accessible bathroom. “Wow, I can’t believe it’s been so long!” I said, and then pulled down my pants and began to laugh. It was, by any stretch of the imagination, a ridiculous situation. My friend, very serious back in the 80s and, I soon discovered, more so now, didn’t find it funny at all, which made me laugh even more. I quickly composed myself and laid the injection paraphernalia atop the toilet tank.

I was able to fill the needle with medicine, but was grateful for her presence—I didn’t realize that you have to keep pushing and depressing the plunger to get the air at the top to disappear. The first shot was easy, but halfway through the second I had a moment of panic that that the needle was going too far into my thigh, and froze. Very eager to leave the bathroom (“People might get the wrong idea!”), she pushed my hand away and finished plunging. She was already gone by the time I pulled the needle out of my leg. (She did eventually laugh about the whole thing later that afternoon.)

I felt just fine afterwards—tired, a few twinges. Woke up this morning without any pain. A chatty and pleasant visiting nurse arrived at 9AM to give me day three injections, along with a story of the famous bone marrow donor she visited a few weeks ago who got both their photos in the paper. My lower back, legs, and right shoulder did begin to hurt a few hours later, as if I had slept funny or overdone it at the gym. It was impossible to find a comfortable way to sit on the couch, but the floor was just fine. And the pain went away entirely after two extra-strength Tylenol. Now I’m kind of stiff, and glad I don’t have to take any long walks.

Another shot tomorrow morning followed by lots of distracting work, and then I have to write a note to give to the recipient. And download some movies to my iPad. And then I show up at the hospital Tuesday at 8AM, bringing layers of clothing because I’ll probably get cold during the donation. (But how will I put on a sweater if I have IVs in both arms?)

14. Dart

On Friday morning I left Sukkot services early and, lulav bag in hand, headed to the hospital to meet C. and K. for my first Neupogen injection. (K. was the person who called me that very first time in March, and whom I didn’t believe.) They shepherded me through a finger stick to test my blood levels, and then we went to a room down the hall to wait for a nurse. Someone came to take my vitals (how I managed to lose a pound during the holidays is a greater miracle than matching to be a donor), and then A. arrived.

I cannot imagine a better nurse to teach someone known to faint at the sight of blood how to inject herself with a needle, as I would need to do for the second shot. A. looked very much like an actress whose name escapes me: Jamaican, no-nonsense, perpetual smile, drily honest sense of humor. “I gave myself shots seven times a day when I was pregnant,” she said. “I’m a nurse, and it was still weird. But you can do it.” This was not resounding encouragement. C. handed me a big envelope with the paraphernalia required by both myself and the nurse who would administer the third and fourth shots. He removed the needles, which I was surprised to discover weren’t pre-filled. (“We’re old fashioned,” explained A.) I’d need to stick two of them into two separate vials, and then stick myself twice in the thigh. It was awkward to hold both needle and vial while pushing the plunger, and I had a moment of fear when she explained how to tap it to get rid of air bubbles—wait, isn’t that how people commit homicide (at least on House, M.D.)? Thankfully, not a danger in this case. (I probably couldn’t even give someone a mild headache with that little needle.) An air bubble would cause a bruise, nothing more.

“Just pretend it’s a dart,” suggested A., and grabbed a chunk of my thigh to demonstrate. Suddenly the needle was in; I barely felt it. (Never before have I been grateful for the abundance of flesh on my thighs.) I depressed the needle, just a little sting. I got up and filled the next needle, and then sat down on the table and stuck myself. Actually, I stuck myself and immediately pulled out the needle, almost a reflex action. The second try was successful, and I pushed the plunger. This one stung a bit more, since there was more medicine in that vial, but really wasn’t bad at all. I think the trick is in not thinking about the fact that you’re sticking a really pointy needle into your body.

I looked up and A. was beaming. “Excellent,” she said. I felt very proud.

So I went back home with the next three days’ worth of drugs and a prescription for Tylenol 3, as well as a goody bag filled with rainbow-colored candy, more Tylenol, a little “Be the Match” lapel pin, a sweet thank-you card signed by everyone at the blood center office and, best of all, a big dark chocolate Hershey bar. K. had explained that the anticoagulant administered during the donation would leach my body of calcium and possibly cause my hands and feet to become numb, so it wouldn’t hurt to beef up beforehand. So I went to the store and treated myself to three kinds of cheese.

Then I waited for the side effects. Some discomfort on Sunday and Monday would be a good indication that the Neupogen had “mobilized,” i.e., was doing its job to send my white blood count to the moon. I could expect pain my lower back and sternum, major sites where stem cells grow. Went home, took a nap, then walked to Friday night services and dinner with friends. All was well except for a strange feeling of my feet being very heavy, and I think I was a little dizzy—but that might have been all in my head. I had a lovely evening but was distracted by worrying if and when those symptoms might start, so left early and slept really well.

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13. Frozen

At the hospital, C. told me that the recipient was about to start the transplant preparation regimen that same day—chemo and radiation to destroy her immune system in preparation for the healthy stem cells that would rebuild it. No turning back after that for either of us. So this was the last thing I expected to hear on the other end of the phone:

“I’m so sorry. They want to postpone the donation.”

Seems the recipient was on a drug regimen to improve her condition, and a few more weeks would help even more. Was I available next month? Of course, whenever needed. But I was all psyched to get it done already. And my friends were psyched for me; now I’d have to tell them it was another false alarm. Boy, did I feel petty. Someone else’s life was at stake, and the only thing I could think about was my own schedule and Facebook status.

But that really was all I could think about.

Before I could continue to dislike myself and add to the long list of items requiring breast-beating in a few days, the blood center lady continued: “There’s another option. You could donate now, and they’ll freeze your stem cells and transplant them in a month.”

Yes, yes, I want to do it this way, I said, even before she finished the sentence. Sleep on it, she suggested. So I pondered, and waffled: October, without the added complication of the Jewish holidays, was more convenient, and it also would be a little more dramatic in Grey’s Anatomy style: donation done, they’d whisk away the bag of cells and new life would start flowing through her veins within hours. Cut to commercial. Yeah, right.

One of the things I hate most, aside from anchovies and cigarette smoke, is indecision—but I was completely stumped, even more so that the situation warranted. Either option was fine with respect to the recipient’s heath, or they wouldn’t have left the choice up to me. But at that moment, maybe because Yom Kippur was right around the corner, I was desperate to make the decision for the right reason and not just the most expedient. I spoke to a number of very wise people, and interrogated the blood center: are you sure frozen cells are OK? Yes, and she was deemed an excellent candidate for that process, not always the case.

Then a friend posed a question: will the recipient be told about your advance donation or find out only when she was ready for the transplant? I thought about how this woman might feel, twice turned away at the edge of a possible new future. If she knew my cells were ready the second she was, no need to wait or wonder if I’d lose patience and decide not to donate, maybe this would give her even more hope and strength.

I confirmed that she would know in advance, and it became a much easier decision. On Friday I’ll get the first Neupogen injection, and everything is set for next week as originally planned.

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12. More tests

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, a.k.a. thing that performs miracles. I made a mental note to ask someone to explain, over the course of the 8 hours I’d be tethered, exactly how it knows which are the stem cells.) It was reassuring to see that exact spot, and be reminded that this event was routine for everyone except me. (In the next bed was a bored-looking teenager hooked up to an iPod and cell phone as well as a central line. The nurse explained that she was getting an infusion to treat a neurological disease. All in a day’s work.)

The nurse also reminded me that I wouldn’t be able to go to the bathroom for 4 hours, so not to drank any coffee beforehand. I think this aspect of the experience makes me more nervous than anything else. But I’ll live.

By then the blood tests had been rushed through, and C. reviewed them: no change, all was normal. He also volunteered the weight of the recipient, more than mine, and explained that this meant a large number of stem cells were needed and so the donation might take the full two days—unless my blood decided to flow quickly. An anticoagulant would encourage the process.

I got back home and reviewed the facts; tests OK, person in charge said it would definitely happen. I had told some friends about the whole saga, but not everyone. This seemed a good time to share the news on Facebook.

I posted, and comments started coming in—yes, it’s amazing.

And then the phone rang, a familiar area code.

11. Needles

In just a few hours I head back to the hospital for a re-do of all those blood tests from last May, just in case I met up with a nasty mosquito during a recent weekend trip down the Amazon. (Not.) Assuming all is well, my first of five Neupogen shots will be on 9/24. After five days of injections, my stem cells will be practically leaping out of my bones, and hopefully not causing any discomfort in the process.

The next three injections were to be given at my home by a visiting nurse. Inconveniently, I have plans to be elsewhere for part of the day on 9/25. Someone else could give me the shot, which is subcutaneous and not intravenous (i.e., the kind of needle you stab yourself with in the arm or thigh, like a diabetic does with insulin), but that person would first need to submit credentials to the donation center and be thoroughly vetted. Of course this makes sense, but is also a big pain. The other option, which a few doctor friends convinced me is perfectly feasible, is to give myself the shot. Needles give me the creeps, but I opted to go this route after a dozen phone calls failed to identify a suitable injection-giver. They’ll teach me how to do it at the hospital, and send me home with a cooler full of drugs and gel packs. One of the friends I’ll be with is a doctor herself, so can supervise.

Or I might decide to skip the event. I have 11 more days to decide; it wouldn’t be the end of the world.

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