Dr. Shellie

I am back from stem cell donation and a wee bit tired out. All is in order so far. It will be a long time before we know whether the transplant works (=shrinks my sister’s tumor), maybe a year or so. In the meantime, she has to go to the hospital every day for the next 5 months. Every day she will get blood tests, and then, depending on the outcome, get various drugs to recalibrate the ongoing battles of my cells vs. her tumor (good) and my cells vs. her non-tumor cells (bad).

My regimen went like this:

1. gave myself subcutaneous shots (=shots in your stomach fat) for five days in a row to encourage stem cells to leave my bone marrow and migrate to my blood
2. had central line (intravenous catheter) inserted into my neck
3. got hooked up to apheresis machine for 4 hours, 2 days in a row: the machine draws blood from the catheter, runs it through a centrifuge to separate out the stem cells, and returns the rest of the blood back through the catheter into my blood stream.
4. had central line removed

This is all a huge improvement over the old days of bone marrow donation, in which they had to dig into your bones to extract samples. Nevertheless, there were a few freaky parts, like:

1. Vomiting non-stop for 2 hours at the end of the first collection day. My husband brought me to the car in a wheelchair. It’s hard to feel like a proper Upstanding Citizen when you are vomiting into a paper bucket in the hospital lobby. "Don’t worry," said the nurse, as she sent me off, "this is probably unrelated to the treatment– it doesn’t usually happen. Does anyone you know have flu? Or maybe you get queasy seeing blood?" Aaah… yes, maybe I do, considering what happened earlier that day, when I got the…
2. …catheter inserted in my neck. This is SUPER freaky. I was completely awake during the insertion. They swabbed down my neck, gave me local anesthetic, located the veins with an ultrasound wand and an x-ray machine (very high tech! I was impressed.), and then PUSHED very hard, so that I felt something going into my chest. That was the catheter itself, a flexible tube about 3 mm in diameter that went all the way from my neck to large vein leading to my heart. Yikes. Actually, the freakiest part of it all was having tubes hanging out of the side of my neck for a few days; I kept worrying that the caps would fall off and something horrible would happen.
3. Tape allergies. The small wound where the catheter came out wasn’t bad at all compared to the giant rectangle on my neck where the skin got inflamed, red, and broke out into blisters and welts. Turns out I am allergic to the adhesive in tape. Something was going on with my face too, since it turned bright red for a few days.

So that’s it. Small setbacks aside, I’m almost back to normal again and looking forward to going to a Singaporean restaurant for dinner. (Attention: Sisters & Sisters-In-Law Who Read This Blog, Tracy: No need to worry!! I am, like, 90% back to normal!)

But this week has given me a little perspective on what it’s like to be sick. It really stinks. I knew that in the abstract, but I hadn’t really experienced it before. I feel really horrible for the people who are going through this day after day in the long term. Like my sister, and this amazing blogger I just found today, for example. Particularly when the hospital they are going to isn’t as lovely, tastefully decorated, full of friendly nurses and a free coffee machine as where we were.

So what felt so awful, exactly? The whole thing was actually pretty straightforward and not too difficult. But for three days in a row, it seemed like people constantly wanted to poke me, stick sharp needles into me, draw blood samples out of my neck, rip adhesive tape off of my skin, and push really hard on my veins. It felt sort of like getting mercifully beat up. When unexpected things happened (temporary drop in blood pressure, so I got nauseous, or the vomiting and tape allergies), the nurses and doctors didn’t really think it was a big deal, but I was never sure whether to believe them or not. You can get pretty paranoid when you are a patient, particularly when no one has a good reason for what is happening to you. Oh, and then your self-esteem sort of goes out the window when you can’t wash your hair for 3 days (can’t get the incision site wet) and are walking around in pajama pants with a tube coming out of your neck in the hospital cafeteria.

The worst part is the images that well-meaning people accidentally put in your head. "Looks like you’re not feeling too great," said one doctor. "It’s true that all of your blood has been through the machine, and the platelets do get bashed up a bit." Cartoonish images of my poor, misshapen blood cells floated through my mind.

The nurse’s instructions were also a little distrubing. "If your temperature goes above 100.6, go to the emergency room right away, since fever can be a sign of infection– we don’t want anything growing in there, around the line." Growing??? Like, in a Petri dish???

And later, after removing the catheter: "If your neck starts bleeding, just apply pressure for ten minutes, and then if it doesn’t stop, go to the emergency room right away. Try not to bend over to tie your shoes or life anything over 3-5 pounds." I imagined accidentally lifting my laptop and having blood spurt out of my neck.

In reality, the risk of any of these things happening was extremely low, and the nurses and doctors were just making sure that I was prepared to identify and react to any potentially harmful (though unlikely) circumstances. But once the images got in my mind, I got (without even realizing it) a little bit freaked out, a feeling that died down only when the tube came out.

Anyway, the main point is this: Mission Was Accomplished. After 2 days, they had collected an IV bag worth of cells (reddish in color, and to make an unappetizing analogy, kind of like homemade tomato paste that separates a little bit into clear yellowish fluid and red pulpy bits). My sister got hooked up to the IV through her own catheter (note: FAR more freaky than mine; hers is "tunneled," meaning it goes in one place and comes out another, and has to stay there for at least half a year, so in any contest over who gets the right to complain, she wins hands down) and now all the stem cells are in her blood stream. She keeps joking that she is going to turn into me, and start spouting equations.

People keep asking me how the transplant went. How to explain? It’s not the end: it’s the beginning.

If there is a moral to this story, it’s probably to appreciate your health. And be nice to sick people. And don’t ask them if there’s anything growing inside their necks. And sign up for the National Bone Marrow Registry, because not everyone has a sibling who is a good match to their tissue type. Note that vomiting and tape allergies are entirely unlikely (though neck catheters are not).