Friday, October 11, 2013

one year ago

One year ago today I did something pretty cool, and it’s had a wider ranging impact on my life than I ever expected it to when it began, and I’d like to reflect on it for my own personal catharsis and encourage others to do this same cool thing, should they be so inclined.

If you’d like, you can first read some of my previous posts about donating stem cells.

If not, I’m going to tell the story from the beginning, starting with Once Upon a Time.

Once upon a time I went to a blood drive. I was in college and it was in the dorm and it was all pretty simple. A friendly volunteer came up and asked me if I wanted to be in a bone marrow registry. All it would take, she assured me, was a painless swab of the inside of my cheek with a q tip. “Sure!”, I responded, and gave her a tiny piece of my inner cheek in exchange for a cute pin that said, “Will you marrow me?”

Knowing the tiny odds of someone being a match for an unrelated stranger is exceptionally tiny (1 in 540, to be specific), I didn’t expect to hear any more from them. Somewhat surprisingly, I did, a mere six months or so later. I agreed to do the follow up blood work, where I went to a doctors office and got a few vials of blood taken out. They told me they’d test my blood, both for the quality of the match between my genes and the ones of another and for the presence of any nasty little viruses in my blood, but explained that being a preliminary match does not mean that you’ll actually end up being the one donating. Sure enough, when they next called me, they said that someone else had been a better match.

Primed by this experience, when I got a phone call in 2012, another three years or so later, I expected that once again the nice marrow people would look at my blood and find it not quite right. After the bloodwork, I got my follow up phone call and, noticing that my phone was near death, plugged it into an outlet and sat in the floor so I could talk while it charged. This ended up being fortuitous, as the phone call was both lengthy and dramatic enough that I was glad to be sitting.

I was a match. A woman, somewhere in the world, 33 years old, had an awful case of cancer and I was the person with the best odds of providing her with the cells she needed to rebuild her immune system and prolong her life.

The scientific details made up the majority of the phone call. In all likelihood, this was based on my own interest. I was in (what I now know was) the last months of a crappy job and craving a return to learning about science and heath, what I envisioned in what became the grad school program of my dreams. Science: the nice person from the marrow registry explained that when a patient’s doctor entered him or her into the registry, they could rank what treatments they thought would best work for their patient’s needs. A bone marrow transplant, the older of the two procedures I’ll explain in this post, is what most people are familiar with. The donor goes to a doctor’s office, is put under local anesthesia, and has a large needle inserted into their bone, from which bone marrow is removed. However, bone marrow donation was not what this particular patient’s doctor was requesting as their first choice of treatment.

Rather, what they requested, and what I ultimately provided, was a peripheral blood stem cell donation. A quick explanation: many people are familiar with embryonic stem cells, because they are a bit of a hot-button political issue. Embryonic stem cells can become any kind of cell- they are blank slates. The hope is that someday someone with, for example, a degenerative nerve disease could get embryonic stem cells implanted in their body, and grow new nerve cells. However, there are also other types of stem cells, which are still around when you are out of the womb, and when you grow up into adulthood. Blood stem cells are in this category. Think about it: our blood cells go through considerable wear and tear (any time you get a cut, for example). They also are made more frequently than many other types of cells.

So, blood stem cells are used to make every kind of blood cells- red blood cells, and the different types of white blood cells that comprise your immune system. For someone with leukemia- like the woman who received my stem cell donation- those white blood cells are what aren’t working. In leukemia, the body produces enormous amounts of immature, poorly functioning white blood cells (which is why people with leukemia often learn their diagnosis because they get sick a lot- their white blood cells don’t function well enough to fight off infection).

In a traditional bone marrow transplant, those blood stem cells are sucked out of the bone marrow. In a peripheral blood stem cell donation, you receive injections of a drug called filgrastim (which was a drug originally developed for people who had received bone marrow transplants). It causes your body to make a tonnnn of extra blood stem cells. Those extra stem cells crowd into the bone marrow and get pushed out into the bloodstream, joining the small amount of peripheral blood stem cells that are already in the bloodstream. (The number of peripheral blood stem cells in the bloodstream without getting filgrastim are too low in number to work for a transplant).

Anyway, lots of science. What did this mean for me, and the woman who now knew she was going to receive a transplant? Hint: it was a lot easier for me.

To prepare oneself to receive a bone marrow/peripheral blood stem cell transplant (I’m going to use the terms interchangeably from this point on, trusting y’all know the science now!), you basically have to get your immune system nuked. The woman who received my stem cells had already been through the hell of cancer (specifically acute myelogenous leukemia, a particularly nasty breed, that she’d been exceedingly unlikely and unlucky to get at the age of 33). She’d gone through the conventional treatments (because of the extremely high risks of a bone marrow transplant, it is a treatment of last resort) and they hadn’t worked, or she wouldn’t be on the transplant registry list. Now she received even more chemo, and likely radiation too (because of privacy laws, I don’t know the details of her treatment), in an effort to knock out her own immune system so intensely that she wouldn’t reject my cells. This of course left her incredibly vulnerable to infection, and in isolation in a hospital ward.

While she went through that hell, I prepared myself to donate. On the registry folks’ end (incidentally, the National Marrow Donor Program is staffed by some seriously awesome people, and does some seriously great work, and is worth your interest and support), my coordinator Cathy wrangled my GAZILLIONS of doctors appointments and lab visits. My tests included but were not limited to: the most thorough physical of my life that asked gazillions of questions about my medical history and physical and mental state (the funnest part definitely being the nurse practitioner and I both sifting through the paperwork figuring out exactly how to classify my outpatient surgical procedure for removing a large chalasian from my eye); a chest X-ray; an EKG; a CBC (which told me about all the different types and numbers of blood cells, which I found FASCINATING!); urinalysis; a nutrition panel (after which I was given leave to eat as much steak as I wanted cause my iron was hella low); and roughly 10,000 pregnancy tests.

Meanwhile, I spent a lot of time thinking about the woman who would get my cells. Praying for her, her family, her doctors. Wondering whether she had kids (being a 33 year old woman). Trying to envision where she lived, with limited success. My case was a bit unusual because the woman who received my cells lives somewhere in Europe. The registry is international, so she still got matched up with me, but the whole procedure for eventually knowing about/meeting the person who got your cells is complicated, because different countries have very different privacy laws about knowing who gave you your cells. (Which, of course, makes sense- what if someone needs an additional donation and the person who gave cells the first time opts not to do it again. What would that mean if you could track that person down?) Still, I try to picture her. My mom’s hairdresser’s friend (ha! My mom really enjoyed telling EVERYONE SHE KNEW about this procedure) said that she knew someone who’d donated bone marrow and met her recipient, and said they’d both ended up laughing upon seeing each other because they looked alike! Which makes sense given, by necessity, their genetic similarity. I think of myself as a uniquely American genetic mutt- a dad who’s half English, half South African (well, Dutch via South Africa, I spose) and a mom who’s mostly Greek with a little dash of Irish thrown in for fun. Where but America could this kind of genetic mix occur?

I was really scared for this woman. As I said, to get bone marrow, you get your immune system NUKED. Which means that the common cold can kill you. Then, once you get the new stem cells, they can attack your own cells (graft versus host disease). This happens a lot too.

However, the process, when successful, is pretty flabbergasting. When the transplant works, when the donor’s cells enter the recipient’s body, they know where to go. Specifically, through the blood stream, into the bone marrow, where they start building the person a brand new immune system. Truly mind boggling: if the donor and the recipient are two different blood types and the transplant is successful, the recipient will become the blood type of the donor.

Fast forward to donation week, which meant injection time. The way the process works is that there’s a cadre of people for the week- in other words, me and five other people would all get our injections on the same schedule and then all donate together on the same day. This fostered a nice sense of camaraderie. Because I lived literally five minutes away from one of the best apheresis centers in the country, I did not travel for my donation, but most other people had. The National Marrow Donor Program flew folks into town and gave them hotel rooms (they also reimbursed us for travel to and from doctor’s appointments, any medical tests we had to pay for out of pocket- in my case, none, because they arranged all of my appointments- and the meals we and our loved one we brought with us ate on the day of our donation. I ultimately opted not to submit my receipts because I thought they were such a great organization that I’d let them spend that money on better things!) Something that I found fascinating was that at LEAST fifty percent of the people in my group were in the military. I take that as a sign that there must be some sort of mandatory (or at least highly accessible and encouraged) way for military members to enroll in the registry.

We arrived that first morning and got thoroughly briefed on the possible side effects of filgrastim. The filgrastim injections? Yeah, those hurt like a BITCH, and you had to get them in each arm. To take home, we were given our own individual containers of extra strength Tylenol, which we were told to take around the clock, before the pain started, because once it did it would be too hard to get on top of. We were also told to quit vigorous exercise, but to walk as often as possible because it helped the drug move through your bloodstream and reduced bone pain. Bone pain, especially in the large bones like your hip bones and femurs, is the most common side effect. We were told what serious side effects to look for, and asked daily questions about our side effects so that the staff could give us any medications we needed. I also received a phone call every morning from Cathy, my coordinator at the office of the National Marrow Donor program.

For me, I experienced two main side effects from the drugs. The first was the promised bone pain. My lower back just killed me for a couple of days. Walking definitely helped, and bad weather meant that I dragged my nice boyfriend to the museums downtown with me and walked around there. Another rainy day I spent walking around the mall picking out wedding presents for a friend. My second side effect was nausea. Now, I maintain that I was lucky, because another friend I had (crazily, a friend I went to summer camp with who donated stem cells at the exact same hospital a month earlier than I did) had gotten absolutely awful nausea that required her to be hospitalized from so much vomiting. I did not throw up during the process. However, I now have an extraordinary sympathy and respect for women with morning sickness, because holy crap it is AWFUL being nauseous all the time! They gave me phenergen for the nausea, but with the caveat that for the drug to be most effective you should take it two hours after eating or one hour before eating. By the end, eating was awful and I wanted to avoid it as much as possible. I remember taking the phenergen, knowing I had to eat in an hour, and calling Steve crying because I didn’t want to. He very sweetly talked me down and recommended buttered noodles, which worked beautifully.

Soon enough it was donation day. I arrived at the hospital at the crack of dawn to get my final injection, then instructed to walk around for an hour or so to let it kick in. I ate breakfast (a bagel with butter, which actually tasted pretty good), and returned to the center.

Let me be candid: I was told that the donation process would be not dissimilar to donating blood. You’d get a needle put in one hand, have it suck out your blood and send it through an apheresis machine that would pull out the stem cells, and get the regular cells put back in your bloodstream through the other hand. While all of that is technically true, that process also sucked. For the blood to successfully flow out of your veins and into the machine, and to avoid clotting, you are pumped full of blood thinners and your blood must be kept extremely warm, which means that you are covered in hot heavy blankets and hot water bottles. You also watch your own blood flow out of you in enormous quantities in a lot of tubes, and it can really skeeve you out. By far the worst aspect, however, is the tourniquet. You have a tourniquet wrapped around the arm that’s getting the cells sucked out, in order to control the blood flow. Within about an hour, it literally felt as though someone was stabbing me in the arm- my nerve cells were all, “THERE IS NO BLOOD FLOW I AM GOING TO FALL OFF IF YOU CONTINUE THIS PROCESS!” I am normally pretty stoic about pain, but, particularly embarrassing in the presence of all these military folks, I started crying like a baby. Which of course happened the moment my boyfriend arrived with an also somewhat embarrassing (though of course also very sweet) balloon and teddy bear.

The nurses were so kind to me and loosened the tourniquet and gave me a break (and also helped me with the VERY tricky business of using the bathroom during the donation. You have to keep the hand where the blood is being sucked out COMPLETELY STILL, leaving you with just one hand, which also has a needle stuck in it, to use. Zippers are a hoot, let me tell you). My mom insisted in taking the day off of work (the donation day and the next day too) and watched cheesy movies with me to distract me during the donation process (fact: I now associate Mamma Mia and Date Night with pain and discomfort and I never want to see them again). My cute boyfriend was cute.

And, of course, the whole process was worth it, and I knew that my level of discomfort was nothing, nothing, compared to the woman with cancer who was receiving my cells.

Still, I was glad when it was over!

Immediately after my donation, I felt surprisingly good. RAVENOUSLY hungry, which means I got to do justice to a big Moe’s burrito, which was the first thing that had tasted good in many days. I took the following day off of work. Sidebar: I didn’t miss a ton of work for the process. The marrow registry was really good about scheduling my appointments on my lunch hour at a Labcorp near my work, or in early morning at a hospital near my house. My injections began on the Saturday of Columbus Day weekend, so the only day I had to contend with before my donation day (a Wednesday) was Tuesday, on which I think I worked mostly a full day at work. I did take the Thursday off after the donation because I basically slept all day. As in, was awake for maybe six hours of the day. It was pretty great.

On Friday I returned to work for a full day. Food was still a little iffy, which means that it was the only day of my life where I ate two meals at Wendys. A shockingly good egg sandwich for breakfast and a baked potato for lunch. It was close to my office, cheap, and prevented me from having to think about food. Bless you Wendy’s. Over the next few weeks, I grew frustrated with not being able to work out (not for at least 14 days after the donation) but otherwise regained feeling like myself very very quickly.

So that’s the end of the donation story. In terms of the followup, it gets really very good, though there are some blanks.

In the life of the recipient:

1. One month later: I had to make my nurses some delicious cookies, one to thank them for treating me so well and one because I had to bring them over along with my good news. Fact: nurses are an integral part of the donation process, but don’t get to find out about what happened to the patient! So I made them some macaroons and delighted with them with the news that my patient had engrafted (accepted my stem cells) and was out of the hospital.

2. Six months later: I got a voicemail from Cathy, my faithful coordinator at the National Marrow Donor program. I heard the smile in her voice as she told me she had good news for me. Imagine my delight when I returned her call to learn that my patient’s health continued to improve, she’d had very few side effects, and that she was preparing to return to work part-time. I could correspond with her anonymously (something with which I’ve been struggling to figure out how to do… what do I say?!) for the next five years and upon the five year mark, if we both agreed to it, we could meet.

In the life of the donor (aka me):

1. One month later: I completed my last day at my crappy job! Nothing like thinking about someone with cancer to make one recognize that LIFE IS SHORT.

2. One year later (aka now): the experience of donating stem cells was all kinds of things for me. I’d absolutely do it again, crappy side effects and all.

One thing it made me do is appreciate my body. Our bodies are amazing, and learning about the science of the bone marrow (or stem cell) donation process really demonstrates that. It’s hard to buy into our body’s ridiculous obsession with how our bodies look on the outside when you witness that, on the inside, with just a little help from some meds, your body can make 340 million blood stem cells (in my case; they need 300 million for a transplant, mine made a little extra. One guy made billions and billions!) If we just let our bodies be our bodies, they can do fearful and wonderful things, and we can quite literally give of ourselves.

Another thing is that it is deeply, purely validating to the self to do something so unequivocally good. I do a lot of “shoulds” and self criticism in my life (an ongoing battle for me, believe me). I constantly feel that I’m not doing enough, or I’m not doing things the right way, or I’m caught up in stupid little things, or that I should just be better at my job/relationship/healthy lifestyle. But doing something purely good, something that is voluntary and purely and simply good is a feeling I highly recommend.

2 comments:

Eireni said...

As an oncology social worker who has seen many patients go through bone marrow transplant, and be placed on the transplant list (and the heartbreaking wait that happens when we can't find a viable donor), I have to tell you that in the eyes of so many, you are a true hero and life-saver for doing this. But what makes it better is that you thought so deeply about why you were doing it, and who you did it for. And also that you allowed the experience to change your own life. You are an amazing person Ileana <3.

Bunyip, Sr. said...

What a wonderful and inspiring post!