The narrative burden I’ve given myself with this blog can feel kind of hard to carry along sometimes, and the last two weeks have been like that. I have been busy with appointments and imaging procedures, and very tired, and not all here brain-wise to boot. Here is a quick catch-up summary for those following from home:
* I left the oncologist’s office with a prescription for oxycodone–possibly overkill, but I can’t take NSAIDs or Tylenol, and that eliminates a lot of pain meds. Unfortunately the oxycodone didn’t work at all–except to make me woozy–so after 4 or 5 days of that he switched me to a very low dose of morphine. Which makes me way more woozy–so much so that I mostly can’t concentrate for long and keep dropping off to sleep when reading and just feel very fuzzy. But it does seem to work on the pain somewhat, so I am very happy to be climbing out of that depressing trough of intermittently immobilizing pain. When my leg and my shoulder hurt at the same time, I feel like a butterfly pinned down to a box.
* The vascular surgeon was not particularly informative, hadn’t looked at my chart, and didn’t seem to want another patient, really, but grudgingly agreed I could come back in 3 months for a look at the clot to see if it has done a good job resolving. Blood thinners for most likely at least 6 months, though. I now know the correct way & location to inject the Lovenox twice a day–don’t trust the ER to give you good instructions–but I still get a bruise about every third time. Looks pretty pitiful as well as not feeling real good around the “love handles.”
* All the imaging studies I had on my leg came back negative for more cancer as a cause of the leg pain, which is great. (X-ray, ultrasound, bone scan, CT scan.) This week I finally got to go see an oncological orthopedist who thinks it is some kind of sciatica-related problem (the leg) and has no idea about the shoulder. He prescribed me Neurontin for the nerve pain in both limbs, and PT to help the leg. He (unlike my oncologist) was not eager to do an MRI of my pelvis & hip–he said breast cancer metastases don’t tend to hide on bone scans and CT scans like mets from other types of cancer do, so he trusts that the imaging I’ve already had is good enough to go on. For now.
* My liver enzymes went way down, almost to normal, by the time they were tested again on the 26th, and then were normal by the 31st, when I showed up for the first day of my 20th cycle of chemo. So: Tylenol was most likely the problem. And now I’m back on chemo, which makes me relieved. Maybe if/when I get to 25 cycles on the same drug I’ll get some kind of medal?
* I hope I respond well to the Neurontin and can taper off the morphine. After just a few days, it seems like that might be working, so cross your fingers that I will be one of the strong responders to Neurontin. Right now the brain fog is the thing I’m having the hardest time with. It is not an unpleasant feeling, but it means I haven’t figured out how to work on any real brain-centered project, and I have quite a few hanging around waiting to be finished (or started). I am very low on physical energy and feel sleepy a lot. (Kind of like last March.) Neurontin can also cause fogginess but apparently not as much as morphine, which really does a number on me apparently. Yesterday I took only one morphine pill, at 7 am, and didn’t need another (yay!), and finally felt like the fog was lifted by 10 pm. At which point I had to go to bed. Oh well. I feel like I’m mentally down below the surface of some weird water and struggling to get back to the air. That sounds too desperate, but take away the desperation and that’s the feeling.
* My first PT appointment is tomorrow and I’m also seeing the functional chiropractor I’ve seen twice already, who gave me core- and leg-strengthening exercises meant to fix what’s wrong. I will have to figure out how to blend what he wants me to do and what the PT folks want me to do. PT 2-3 times per week. Luckily it’s only 20 minutes away. It’s in a town we don’t go to much, in the same plaza as Ocean State Job Lot, where I never have been, so maybe we’ll acquire a lot of junky stuff at really cheap prices.
* My 6-week follow-up brain MRI last Thursday was the last of the imaging studies that filled up my two weeks instead of chemo. This morning was my appointment to find out about it and make a plan. One of the two “dots” we were following closely (6 weeks between scans) stayed the same, just a dot (apparently this is now approved radiology-report terminology…maybe I missed a footnote defining the minimum and maximum diameter of “dots” somewhere). The other dot grew and is now a 6-millimeter tumor that we need to zap. It is in the pons, which is part of the brainstem, which is hard to target and houses many important basic-level control centers (like for breathing). It’s in the middle of the pons (which might be better than, say, on the posterior surface where I think that respiratory center is). So next week I’ll have the appointments to set that all up (another MRI, etc.) and week after next, probably on the 14th, I’ll get zapped for the third time. Woo hoo. The radiation oncologist has really relaxed since we first met him but he still doesn’t crack a smile at my jokes.
I think that’s it for now–that’s a lot for two weeks. I’m hoping for a calmer next two weeks, despite zapping my brain, and an even calmer rest of April for recuperation and catching up on work.
OK, when was anything I ever wrote actually “quick”?