February 28th, 2015
A few days ago, I went into the BIC, the outpatient bone marrow infusion center where I’ve been receiving chemotherapy since I last left the hospital. They do labs in the BIC, they perform procedures, they give chemotherapy, and they have a freezer full of orange sherbet. When last there, I met with Ben, the oncology psychologist, who I like a lot, and I got labs drawn.
The BIC isn’t a bad place. I like it when it runs smoothly. And when they’re not out of sherbet.
That being said, we’ve had a couple of scheduling mishaps, where we’ve ended up sitting around for four hours instead of a typical hour-and-a-half appointment. And while we like everyone that works there, there never seems to be anyone that’s in charge of planning what I’m supposed to be doing in the future. We (Mom, really) always seems to need to all-too-frequently rattle some cages.
This was the case earlier this week. I’d finished all my chemotherapy for this session (phew, off that steroid Dexamethasone that spiked my blood sugar like crazy) and I had a seemingly ambiguous re-admittance date of March 5 floating around. What was I supposed to be doing in between now and then? Ben, helpful as always, told us he’d track down my doctors (not usually visible to the naked eyes of patients) and find out what, if any, plan there was for me between now and March 5.
Almost as soon as we arrived home, we (my mom) received a call that all my invisible doctors had met that very morning and decided I needed a new bone marrow aspirate. But nobody told us; which was frustrating because no one seemed to know when I could actually go through the procedure. By the time my mom received the call, almost everyone had gone home and it was too late to schedule anything. The person on the other end of the phone indicated I could get the bone marrow aspirate the next morning (surprise!) or not for some time (ambiguous!).
The sense of cessation of even a small amount power, be it for scheduling or defending what medications I need to be on, or even to have some confirmation that those invisible docs can hear us–creates a huge feeling of instability. There’s really not much I can do other than follow what the nurses tell me I can do. But there’s this little bit more stuff we should be able to do that we rely on to feel like we’re affecting the process.
The bone marrow aspirate is the one where they drill into my pelvis and remove bone marrow, the fluid around the bone marrow, and a long-ish piece of a “core” of bone. I’ve had this done three times now with this bout of leukemia; the first time with no pain medication and simple assurances that, “it wouldn’t be so bad,” which was awful. The second time, I was on a very minor amount of pain medication (not as awful, but still pretty awful).
Whenever I–or we– brought up the possibility of anesthesia or at least stronger pain meds like those used at other hospitals, we were met with looks of total consternation. Why would we want those things? The procedure was utterly painless according to what they’d said before–how could they be wrong?
Luckily, there’s a new program in place for some (“Those Levins won’t stop going on about this!”) where they administer some mild and useful anesthesia. The whole process seemed to go easier and smoother–which may have also had to do with the nurse practitioner listening and caring to what I said. The whole process was about twenty minutes but I can recall about five.
We were called back in on Friday with little expectation of who we’d meet with or why we were even going to BIC (typical BIC). We did know that the first slide from my bone marrow aspirate should be be back, and while not explaining all of the details–could potentially reveal If I was in remission or not.
One of the people we ended up meeting with was a nurse practitioner to whom we expressed our concern about my ambiguous March 5 readadmit date and what I was doing before then. Luckily, she was one of the nurse practitioners who was able to both see and communicate with my invisible doctors.
As it turns out, since there’s no apparent calendar in the BIC, one of my doctors was leaving us a message at home rather than visiting with us directly. When the nurse practitioner discovered this, she got information on my first slide which she brought back to us (although the doctor stayed behind). Unfortunately, the slide showed that I’m still leukemic. But only 1.30%. That’s down from an initial 90% to then 30%.
While I would have preferred to have no leukemia at all, which would have allowed me to go straight to the bone marrow transplant, I can live with these results. I’m going back on the chemo protocol I just finished, which I tolerated decently–it was only four days of inpatient and the rest outpatient at home (delivered at the BIC)–and any time at home beats time at the hospital. Even (and maybe especially) when I’m feeling lousy.
The bigger, better news is that with counts like that, one more round of chemo will almost certainly put me into remission. My sisters will be able to come into town, someone (likely not an invisible doctor) will take Rachie’s stem cells, I’ll get some radiation and some more chemo and I’ll get those precious stem cells. I’ll be in isolation for three or four weeks, while we trick my body into giving me the leukemia-void immune system I’ve always wanted.
I do wonder, since the stem cells are coming from Rachel, if I’ll gain any of her other traits. Like being able to stretch crazily, or having strawberry allergies, or growing long, blonde hair.
And that March 5 date? Well, now it’s going to be the more ambiguously BIC-like March 4. That being said, it turns out it’s just for me to recover. No chemo, no BIC, no hospital. Just being home. I’m okay with this.
NEXT: “Loved And Blessed By My Friends”