Okay. I’m ready to tell the story of how stem cell donation works, and how it went for me. If you’re just getting to this story, you might want to catch up by reviewing these posts (there’s a lot more you’ve missed, but this will give you the main points of the story). The complete list of posts is available here, as I’ve tagged them all with the same category name.
Here are the highlights, in order:
The first phase of donating stem cells is to get daily injections of a medication called filgrastim that increases the body’s generation of stem cells.
Needle queasy? If you’ve gotten a flu shot, you’ve survived the worst of it. These are small injections given into the skin, so the needle is small and the injection is pretty painless.
There are five days of injections – four days leading up to the donation, and then a fifth injection the morning of the actual donation. DKMS contracted a local home nursing service to give me the injections.
The medication is designed to trick your body into thinking it’s sick, so it will release more stem cells into your bloodstream. Therefore, the frequent side effects are basically like coming down with the flu. Headache, body ache, fatigue, and the like. I had been told that these symptoms would slowly increase, probably not bother me until Day 3, and then become the worst on the last day. I was prepared for this, and figured I could deal with fatigue and aches and pains. I am a runner, right?
On the first day, a Thursday, the nurse came to me at work. This was the only day I would see this nurse, and I was a bit thankful for it. Don’t get me wrong, she was completely professional and very nice, but I think she was a bit thrown off by having to draw blood for a CBC and give me injections at my work. She wasn’t prepared to draw my blood, so she had to go out to her car and get the equipment (at least she had it with her, though!). Then, she gave me all the filgrastim in a single injection, although they had sent equipment for two separate injections. This caused a slight “knot” in my upper arm – I couldn’t feel it but she mentioned it when she finished the injection. Then, after the injection, although she was supposed to stick around for a half hour or so to make sure I didn’t have an allergic reaction, she left immediately. I looked at the EpiPens that came in my kit and prayed I didn’t need to use them, and went back to work for a while. Thankfully, they never needed to be used.
That evening, I was “single parenting” as my husband had something at work, so I took the boys out for dinner. Usually, I wouldn’t take them out for dinner on a school night. But I didn’t feel like cooking, and I had promised them we could go to the library and then out to dinner. So off we went. I found myself feeling tired and a bit cranky. Neither is that unusual for a Thursday evening, especially when trying to take three boys out to dinner at a restaurant with one parent. 3:1 definitely puts the odds in their favor. Plus, we got there early (we eat early with three young boys), and the kitchen wasn’t quite cooking yet, so the waiter informed me that the options were limited for dinner. So I ordered a black bean veggie burger.
When the burger arrived, it was definitely NOT a black bean burger. It was the color of, well, a “flesh” colored crayon. There were no black beans in it, nor were there any pieces of anything I could define as veggies. I’m not sure if it was straight soy protein, or what, but it wasn’t very good. I got the boys home and into bed, and, feeling tired, went to bed early myself.
I woke up the morning of the second day feeling awful. I hadn’t eaten since that dinner the night before, but I woke up and was bent over the toilet by 6:30 am. I spent the next few hours alternating between falling asleep on the couch, and running to the toilet and dry heaving. I got the boys on the bus (I don’t work on Fridays) and turned on PBS for my 2 year old. When I realized I had slept through most of Curious George without realizing it, I knew that I wasn’t going to be able to keep him home. Luckily, my mom had planned on stopping by that morning to check in, and when she arrived and offered to take him for the day, I gladly accepted. I headed straight to bed and passed out.
I slept a few hours in bed, then was finally able to get up, move around, and eat a bit before the nurse arrived for my second injections. This nurse, was, in a word, FANTASTIC. She was a bit concerned at seeing me so sick. I told her how I hadn’t expected to feel bad on the second day, and she agreed that it didn’t seem right. But, we went ahead with the injections after checking through my symptoms on the daily injection form. I was able to eat, at least, and I was starting to feel better.
This time, the new nurse split up the injections into two separate injections, one in each arm. This made each of them smaller, and it was really easy. She had experience with stem cell donors, and she said that she always gives the medication this way, because “there’s no need to pump it all into you at once!” I loved this nurse. She’s a Hawkeye fan, and it turns out she knows some of my husband’s coworkers, and I know her husband through work. Small world.
A second two hour nap, and I woke up feeling, while still tired, much better. I spent the evening with the family and actually felt almost normal. I was disappointed though, because I had been scheduled to help present a “big check” to Project Renewal, one of the charities that the Live Uncommon Race Team had supported this year. I was looking forward to seeing all those kids, and was so sad that I couldn’t make it. But nobody would have wanted to see me in the state I was in…
Day 3 arrived, and the nurse came early for my third injections. I felt infinitely better, and the nausea was completely gone. This was weird because symptoms of filgrastim are supposed to increase each day. I’m pretty sure now that what I had was either a stomach flu (there was a short-lived bug going around) or some weird food poisoning that hit 10 hours after eating. Either way, I felt better and I wasn’t going to complain.
I pretty much spent the day normally. I got a haircut, went out to eat with my boys, and just had fun. I was a little more tired than normal, and I had a little nagging headache, but it was easily tolerated.
Day 4, Sunday, was the day that my husband and I had to travel to the donation site (if you remember, I had to travel to the hospital because there wasn’t a DKMS hospital close that I could get into in time for the patient). I had my fourth injections bright and early (around 8 am) and we packed up and got ready to go. We dropped off all three kids at my husband’s mom’s house (they were ECSTATIC at the prospect of three nights with Grandma!) and we headed to the airport.
Travel was uneventful, when we arrived at the airport a driver was waiting to pick us up. It’s always such a surreal feeling to walk down to baggage claim and have someone holding up a sign with your name on it.
The driver drove us to the hotel, which is literally across the street from the hospital, and we got checked in. The hotel was really nice, and the bed was comfortable. What more can a girl ask for? Especially since I was exhausted and was ready for bed… My symptoms on Day 4 were still relatively mild (I was comparing everything to how awful I felt Friday morning). I had that nagging headache, which was right at the base of my skull, and I had lower back pain that felt like bad menstrual cramps (sorry, guys, you’ll have to take my word for it). It was tolerable. The worst part (which wasn’t that bad) was that occasionally I’d get up and feel my back throbbing or pulsing. It was weird and definitely did not feel good.
This hospital was on a college campus, so we walked a few blocks to an open restaurant for dinner. It was perfect because they served beer (for my husband, I couldn’t drink during this process), had football on, and were open and serving food. We each ate a sandwich and then headed back to the hotel, where I promptly went to bed and slept for 10 hours.
I’ll continue with Day 5 in my next post. To be continued…(check back Thursday!)