Post-Hospital Update
I’ve been out of the hospital for about 10 days now, and I sense it’s time for an update, as a bunch of people I’ve spoken to in the last couple of days were behind the curve.
In the biomedical sense, I am doing very well. I left the hospital the day after I got my brother’s stem cells. He actually had more trouble with the transplant than I did - he got jabbed in a vein and developed a huge bruise. I had no such problems. The only bump in the road so far was an allergy attack the day after I got home. I got up late, and ate a protein bar. About 10 minutes later, I was having trouble breathing, itching like crazy, turning red and covered in hives. My girlfriend was here, and so was my roommate, Ben. They were able to bring me anti-allergy medicine quickly, which was good because my blood pressure dropped precipitously (caused by hives; I could tell because my vision went black for a long time when I stood up) and my lips went numb. I paged my doctor and got a response in under 10 minutes on a weekend - he said:
“That’s weird. Why on Earth are you breaking out in hives?”
It’s nice to have a doctor with a sense of humor. He gave me a rush prescription for steroids, and suggested anti-allergy meds. The whole episode was disconcerting for two reasons. First, I have never had an allergy attack. Since I was diagnosed, I have developed some minor allergies. This isn’t too odd, because people commonly develop new allergies in their mid to late 20’s. Plus, I have an immune system disease, so the treatments basically re-boot the whole mess, and new allergies can crop up. Now I have super-sensitive skin, and two sneezing fits a day. Even so, I’ve never had a full-on allergy attack that looked like anaphylaxis (a potentially fatal allergic reaction). I could live the rest of my life without it happening again, but there’s really no way to know because my immune system is too topsy-turvy right now for allergy tests. So, I have an epi-pen, an “autoinjector” that prevents anaphylactic shock - as my doc wrote the prescription:
“Have you seen Pulp Fiction? Like that.”
When I suggested that if I needed a needle in the heart, I’d let him perform the necessaries, he responded:
“There’s no way I’m doing that.”
Did I say a humorous doctor is “nice?” I meant “a mixed blessing.”
A second upsetting aspect of the allergy attack it represents an overactive/unnecessary immune response. Graft vs. host disease, similarly, is a condition where the transplanted immune system goes after its native counterpart with excessive enthusiasm and causes collateral damage to associated tissues. Many of the symptoms of GVHD are also symptoms of an allergy attack. On my discharge instructions, there are a number of indicators that require an immediate trip to the ER, or a next-day trip to the hospital. Allergy-like symptoms are included on both lists, and GVHD can be fatal (as can anaphylaxis). My doctor’s way of assuring me that it was far too early for me to develop even an acute case of GVHD was by saying “that’s weird” instead of “this happens all the time, come back to the hospital.”
This underscores a broader issue of cancer survivorship. Behavior that would be annoying or pathological in a healthy person is good practice for a cancer survivor, especially a blood cancer patient with a compromised immune system. Constant use of sanitizer, frequent hand-washing, and frequent house-cleaning are all mandatory. So is a more generalized sense of hygienic awareness that borders on OCD - if you touch something, consider where it’s been and the last time it was washed. When you cook, consider what touched what surface or implement and discard, clean or switch as required. Throw things away - tissues only partially used, beverages partially-consumed, leftovers more than 48 hours old, etc. The line between vigilance and paranoia is a hard one to walk.
The same is true for symptoms. The warning signs of GVHD are, as I mentioned, things like hives, a runny nose, indigestion. A normal person sneezes and develops a runny nose and thinks “annoying” not “I wonder if this s how a life-threatening illness starts.” Swollen lymph nodes and fevers happen all the time; they’re part of a normal response to infection. They’re also symptoms of lymphoma. As long as I live, I’ll feel a presentiment of doom when my temperature rises.
For now, my doctors are very happy with my progress. I’m boring them, they say. I say I’ve supplied them with enough entertainment and they should seek novelty elsewhere.
Life these days is pretty sedate. Mundane but mildly stressful challenges accompanied moving into our new apartment earlier than expected. Everything seems to have sorted itself out, and we’re settling in. I’ll be under strict sanitary guidelines for an indeterminate time. These precautions could last as long as 100 days, but will most likely be rolled back gradually as I make progress. For now, I see my doctors for an exam and blood tests Monday, Wednesday and Fridays. They check my blood counts (red/white/platelets), liver and kidneys, and the level of the immunosuppressive drugs in my system. They adjust these to strike a balance between preventing GVHD and rendering me vulnerable to infection. It takes between 90 minutes and 3 hours each time. Next week, we hope to go down to 2 visits/week.
Mostly, I’m under a kind of medical house arrest. When I travel, I have to use private vehicles (no public transportation). While in the cab, I wear sterile rubber gloves and a respirator. I have to wear them in the hospital hallways too, and if I were to go anywhere else (thanks to Ben and my mom, I don’t have to), the same requirements would obtain. Crowds, babies, sick people and enclosed spaces are verboten. I can’t eat raw foods of any kind - no sushi, no salad. I can’t eat raw vegetables, but fruits with thick skins - bananas, melons, etc. or cooked or canned ones are ok. Everything has to be well-cooked. All the prepared food I eat has to be cooked in my home, or produced in a factory. I can only drink bottled water. The good news is that I have enough time to prepare an impressive post-confinement restaurant binge.
Mentally, I have good and bad days. Lack of privacy and mobility are grating if you’re accustomed to both. Last weekend, I missed an important funeral/memorial and I am confident that has put a big dent in my happiness quotient. I’m doing some academic side-projects, and striving to keep busy, but motivation and distraction/focus are problems. I have visitors and good people with me, but I miss my pets terribly. The human-animal bond is a powerful thing. More importantly, I’ve come to expect the company of my furry friends. If I hear a loud noise, I fight the reflex to check who knocked over an insignificant (but expensive) knicknack en route to important (but invisible) feline business. Expectations matter. There’s a scene in The Dark Knight, where The Joker explains to the District Attorney that “[n]obody panics when things go ‘according to plan.’ Even if the plan is horrifying! If, tomorrow, I tell the press that, like, a gang banger will get shot, or a truckload of soldiers will be blown up, nobody panics, because it’s all ‘part of the plan.’ But when I say that one little old mayor will die, well then everyone loses their minds!” If history teaches us one lesson, it is that you should never start a land war in Asia. If it teaches two lessons, the second is that human beings can get used to almost anything. But if you surprise people; deviate from their expectations, the reaction will be swift and significant. Get used to falling asleep with a warm, furry friend and you’ll find that nights when you don’t need to worry about squishing something with claws and teeth are also sleepless ones.
Still, I have many more good days than bad days, thanks to my dedicated support system and appreciation for the little things. I appreciate all the messages of love and support, including the ones I haven’t gotten to answering yet. I’m working my way through the backlog, and very grateful for my friends, mentors and loved ones. Your messages and your company help provide me with distractions, reasons to stay engaged, and things to look forward to. Most of the diversions that keep me occupied were supplied by friends - my Kindle, most of the books I get from Amazon and Borders, my vacation pictures, spot-research requests from my former students, etc. I appreciate the book suggestions from everyone - feel free to keep them coming. You help keep me happy and healthy.
Warm regards from snowy Cambridge.
DS
