While the second opinion was brighter than the first, everything I go through in Lymphomaland opens new windows of insight I’d have been happy to keep closed. It’s getting drafty in here. There’s that always-look-on-the-bright-side saying - Whenever God (or whoever) closes a door, he/she/they opens a window. Why do we think a bunch of open doors and windows is a good thing? Bugs and rodents wander in, kids slip out. It’s like disguising problems as opportunities. Sometimes that shit is just a problem.
I sent an e-mail to my oncologist about the PET scan suggestion from Dr 2nd Opinion. I didn’t really expect: OMG, I totally forgot about the PET scan, that’s a fabulous idea. You should definitely do that and then maybe skip the radiation because you'll probably find out that you absolutely, 100% don’t need it. Have a great holiday! But I kind of hoped.
She did say Have a great holiday, but the rest – not so much. As if a hematologist who’s at the top of her field, wouldn’t have known that PET scans are somewhat unreliable when it comes to my kind of lymphoma. Lazy small cells don’t necessarily light up. There’s a 20 to 30% chance (depending on what study you read – my brother did some of the research for me, my oncologist didn’t bother rereading a pile of studies I’m sure she’s quite familiar with) of false negatives. So basically, if you come back not glowing, don’t get all excited about it. There’s still a fair chance it’s there.
Dr 2nd Opinion said that if the scan comes back clean, he didn’t see any good reason for me to go ahead with the radiation. And he’s the radiation dude, also with a great professional reputation.
So basically – A lot of GREY. All the information that comes from scans – be they PET, MRI or CT (I’m having all of them) while helpful, is inconclusive. My oncologist thinks I should go ahead and radiate, but of course it’s up to me.
The phone rang at 10:58 am last Wednesday and someone asked me where I was for my 11:00 am PET scan. Damn, that intuition app didn’t go off again. I was busy lying on my bed.
It was rescheduled for Friday. I had to wait an hour for the RADIOACTIVE sugar to travel. This shit goes directly from a heavy metal canister, to protect those administering it from its toxicity, into my vein. I try not to think about it. I’d brought my computer, to get some work done. When the technician found out I had a tumour in my head he asked that I not use it. Not use my head - the house my brain lives in. No writing. No reading. No stimulation. “Can I think?” “Yes, you can think.” I try to meditate.
Lots of people called and texted to ask how the scan went. It’s never the scan that’s the problem, it’s the findings. But thanks for asking, as scans go it was pretty nice. Lovely staff. Tasteless liquid . Quiet machine.
At least if I do come back glowing, I know I should head straight to radiation, do not pass GO, do not collect $200. Decision made.
My world is not a world of clarity. I live in the grey zone.
Generally, I’m a big fan of the colour. Don’t like dogma, fixed ideology, absolutes. And cancer good news doesn’t come in black and white. So pass the grey, please.