Cancer has so many freaky parts. I write about them as they hit me. Up until now I’ve been in what feels like the uphill phase – the new world order. Moving bumpily toward the mid-point that may be the beginning of the end of cancer. Or not.
I’ve been through many stages of cancer: the maybe cancer, the definitely cancer but who knows what kind, the might be something in your brain but might not, the let me drill a hole in your backbone with a corkscrew to get some bone marrow, the we’re not surprised there’s lymphoma in your spine, the let's have a Ct scan (more than once), the MRI, the lumbar puncture, the let’s start chemo, the spike a high fever and go to emerg, the lumbar puncture (move back three spaces and do it again), the go to college, have two kids, get a job, miss a turn stages...feels a bit like the game of LIFE - Cancer edition.
I’ve been so preoccupied with this insane uphill climb, that I've given nothing but cursory thought to the downhill part. On January 30 and 31, I’ll have my 3rd chemo. That’s half-way. A week later I'll have a full body CT scan to determine my progress.
Progress. And the implied not enough progress.
I chose to worry about the post-chemo timing, about not drinking for 4 hrs in advance of the test, because these days I can’t go 10 minutes without drinking. I called the CT department to check, and it turns out the receptionist was wrong. It’s no solid food 3 hrs in advance – but I can drink. Clear liquids only.
Despite my inclination to demand reliable medical information from receptionists, and consider everyone in this business an authority figure who gets to boss me around, I’m trying to embrace my own bossypants question authority attitude – politely of course.
But it’s hard when people hand you forms with directions, and raise an eyebrow when you say “But I’m pretty sure I got to drink last time.”
All of this to say that I’m avoiding thinking about the CT scan itself, i.e. the results. What’s going on with the lymphoma. Somehow it’s easier to focus on the logistics of the treatment. But we’re moving towards outcomes, and I’m scared that maybe it’s not working, or not working well enough. Dr J says my kind of lymphoma responds really well to treatment, but that’s only statistics.
I was a little shocked the first time he mentioned meeting with a radiologist to discuss the pros and cons. I thought it was possible there would be no pros, maybe no need to nuke me. And then there’s the point that was made months ago, that you don’t really cure lymphoma, you manage it, and so, since this is lazy-ass lymphoma that will likely come back, but really slowly, why radiate? It’s all so confusing. The hardest part is there really is no truth to unearth.
“They’ll probably want to do the radiation treatment in your face, because it’s in a location where it can start pressing on other things,” Dr J. said. Which it wasn’t doing, unlike the original lymphomatic hot dog that was wreaking havoc with peeing.
You’ll be happy to know I’m peeing fine now. That’s one measure of progress.
I don’t want to end on a down note, but that just happens sometimes with cancer. After we discussed redoing my lumbar puncture, I laughed (maybe it was more of a you’re fucking kidding me giggle), and said “Just as long as they never have to do that bone marrow biopsy again.”
And Dr B said “Well if you want to get the designation of complete remission, at the end of the treatment, you have to redo it. But since you aren’t in a clinical trial it’s not a requirement. We can talk about it in a few months.”
Ok so, good news: All of a sudden the possibility of complete remission has been introduced into the conversation, But, bad news: the bone marrow biopsy was one of the most painful thing I’ve ever experienced.
Regardless how delusionally comfortable I am chilling (true, no one has ever used that word to describe me, least of all me) in the no news is no news department, the news is coming, whether I’m ready or not.