Argh, so frustrating to need to Rest Up explicitly in a day before tackling a task or event I want to bring even a modicum of energy to–it feels like I am an old laptop with a failing battery that has to be charged up in a pre-planned way. It’s also hard to remember that this level of fatigue is temporary (due to the SRS last week) and I will rise out of it eventually.
This morning after sleeping in, I sat on our porch surrounded by the beautiful, damp bright-green view I am lucky enough to have, of trees, grasses, wildflowers of late spring, darting swallows, sparrows, starlings…people moving around the land with more energy than I have…we drank our tea and I soaked it all in. Ahhh.
I found Not Enough anticipatory-guidance style info online for this stereotactic radiosurgery experience from the patient perspective–so here are some photos that may be useful for someone to run across someday.
Sitting here just finishing up the first dose of cycle 23 of chemo, with awesomely normal liver enzymes, decent red-blood-cell count & white-blood-cell count, everything else all good. Now we’ll stop by the food coop and go home and I will rest some, because last week’s three afternoons of zapping gave me a lot to recover from.
There is a small possible-mini-seizure story to be told from the weekend, which of course means more appointments for me, and no driving until we figure it out, and continued gooney drugs (anti-seizure prophylaxis) way longer than planned, which is unfortunate because I don’t like feeling drunk and a bit unstable on my feet. And also I can’t drive if I’m going to be at risk for seizures. But it might have just been dehydration, or–my hypothesis–a 90-second seizure secondary to brain disturbance from the SRS plus dehydration/heat/electrolyte imbalance, not to be repeated because it was due to treatment & post-treatment effects, which are temporary! Meanwhile I have other things to follow up on this month–the DVT, the knee pain, my usual 3-month CT scan–which felt a bit overwhelming even before the need for a neurological consult…
In other news, I got approved for disability payments from Social Security in what seems like record time (possibly related to all the records I sent them as instructed…) so at least now my feeling of having too much medical “work” to do is matched by the government’s agreement that I can’t do regular work! I am disabled by my appointments more than by my disease at this point. Who knew?
And now “spa time” in the infusion room is over and it’s off to the coop. Soon I’ll post some pictures from last week’s SRS adventure.
This afternoon is the first of my brain zaps for very small tumors. The radiation oncologist wants to do them one at a time over three days, so we will be at Albany Med Tuesday through Friday, every afternoon. Argh! It’s like a job…but with mind-altering drugs (Ativan, Keppra).
All went well at chemo today–liver enzymes blazingly normal. For random reasons, I was in and out of there in record time–70 minutes from the front desk to out the front door again. Cycle 22 completed! Now I feel a usual amount of icky but will feel better tomorrow.
My liver enzymes went back to normal yesterday so I got chemo–we’re calling it day 1 of cycle 22 with a skipped dose on day 8 of cycle 21. Last week was my unplanned week off of chemo–last Tuesday my enzymes were still too high for the oncologist to be comfortable, so no chemo, and instead, a visit to the liver specialist upstairs at Albany Med later in the week.
That was a reassuring consult, because my enzyme elevations were called “mild” in the liver-disease context, and the blood testing has ruled out any disease causing the elevations (hepatitis, etc.). The fellow working with the specialist told me liver metastases don’t raise the enzyme counts (confirming something I had already heard from someone else but wasn’t sure about). And the specialist ended up talking to my oncologist and reassuring him that I could still get chemo with mild enzyme elevations if the chemo was of benefit–it was unlikely to damage my liver. So! All that is good. Even though we still don’t know what caused the late-April ALT/AST elevations–if not Sudafed plus everything else. They even tested my Epstein-Barr Virus titer and it didn’t show anything active. The liver specialist thinks it could have been the chemo drug itself, since that happened to 18% of takers in one trial, but on the other hand, I’m on month 16 of the same drug and it hasn’t had that effect on me. So. Water under the bridge–I hope so. And if that same water cycles by again, we can desist from freaking about about it so much. Thank you, liver specialist!
I suggested my oncologist take a deep breath and let the liver thing go now, but he said “I don’t take deep breaths. I’m just going to worry about next week’s enzyme levels.” Well, I’m not (much).
Meanwhile I have sent in my paperwork for disability (and eventual Medicare if I want). That was a lot of work. Since the DVT I have felt honestly more disabled by my situation, though it’s often disability-via-too-many-appointments rather than disability-via-physical-inability. Though I’ve got some of that too. I am trying to return to two walks a day, but they are shorter and leave me tired. I’m also trying to stick to doing my 30-minute PT routine once a day, and ideally do some qi gong once a day as well. That’s a lot! (I do it with the help of my neighbors here at QIVC, who join in with me and encourage me and provide interesting conversation.) And that routine is not something I’m holding myself to on days like today, post-chemo, post-bone-medicine-that-causes-flu-like-symptoms, and post-IV-vitamin-C treatment (feels like ick also). I took the 2 shorter walks but I don’t think PT or qi gong is going to happen: I am tucked in bed with my head feeling like bleh.
Despite feeling icky today I was lucky enough to enjoy a delicious lunch at my friend Gina’s house…so lucky to have a friend who loves to cook and share! I cannot describe how good that quiche or related eggy thing tasted…ahhhh.
So, curb cuts. Here is how I’m living a slightly different version of life now. When crossing the street in Chatham or Albany, I go for the curb cuts. It now apparently matters, to an unconscious part of me that directs my feet, whether I have to pick up my leading foot that extra 4″ or so, or whether there is a nice slope for that interim step between street and sidewalk. Conserve energy! I guess that’s what I am doing. I just noticed this a week or so ago.
Next week ideally will be chemo again on Tuesday, then various brain-zap set-up appointments Wednesday and Thursday. Same for Tuesday the next week, then zapping on Wednesday the 27th. So that’s the plan! More later on the metastasis spreadsheet, which I actually pulled off, and shared with my oncologist and radiation oncologist. Next: conquer the world with it (the world of radiology at least).
Blog posts will now be announced on Twitter for the convenience of those of you who use it. I’m @eharrisbraun and I have only ever posted exactly ONE Tweet.
The new look of the blog was forced upon me today by Eric upgrading our WordPress–the 2006 blog theme was no longer available. Hope you like the new fancier stylings.
OK, just to catch up, before I retreat into watching a dumb movie:
The week after the zap I felt pretty good, all in all, despite having four sore bumps on my head. Eric left for Ecuador to see his parents and my mom arrived shortly thereafter (she picked up our car at the airport). We, meaning I, had lots of appointments of various sorts pretty much all week (Jesse had a few in there too just to make things interesting). So she drove me around a lot. I got very tired and a bit headachy on Tuesday and stayed that way until Saturday, when I realized I had gotten a cold. Sinus headaches. All week I conserved my energy and did my PT (30 minutes twice a day, or once if I went for a longer walk), walked, and sat on the sofa. It was rainy and cold so we had fires in the masonry heater. On Saturday we sprang into stop-motion action and accomplished a lot of household to-dos, separately and together, that were very gratifying. On Sunday my mom left and on Monday Eric came home. I’ve had a bit more energy since then.
Tuesday we went for chemo but my liver enzymes were elevated–not just a bit above normal but too high for chemo. Was it the 3 Sudafed tablets I took over the weekend? On top of everything else I am taking? Who knows. No one knows yet, but the plan was to come back Friday to try again. So this morning off we went, but my liver enzymes were even higher: over 3 times normal. That’s actually getting clinically relevant: my liver is showing some stress. So now I try again on Tuesday. I’m not sure whether that will be the second dose of cycle 21, or the first dose of cycle 22 after a truncated cycle 21.
Of course either way my chemo schedule is now awry, which means my May zap might need to be rescheduled by a week, but that would be 7 weeks of tiny-tumor growth, when the radiation oncologist was happy with either 4 or 6. Hmmm. I guess we could move it forward to 5 weeks.
And meanwhile we’re trying to plan a trip to France in late June that ideally will play nicely with my chemo schedule, which is…um…apparently never to be trusted. And Southwest, the airline of sick people (changeable tickets!), does not fly to France. 🙁 Of course in the end 10 days or so in France is worth skipping a week of chemo, mais oui bien sûr, but I’d rather not be gone for what would be two treatment weeks instead of one week being an off week. Chemo geek…yes.
I find this all very frustrating and a big bummer. Of course, behind all that is the worry that the liver enzymes are the first sign of liver metastasis. So far the cancer has hit 3 of the 4 most popular triple-negative breast cancer metastasis sites (lung, brain, bone) and guess what the other one is?
Meanwhile, in cancer-care technology, Eric got the radiology department to send him, overnight, on CDs, every CT scan I’ve ever had, apparently, because we want to try to 3-D print the mysterious lung met to see if a physical representation of it will help dispel the confusion around whether it’s a breast-cancer metastasis or a primary lung cancer (insert standard snorts of laughter at the implausibility of this here). And why not? Open-source software out there will help Eric (and Will, whose 3-D printer it is) convert the DICOM files from Albany Med into some other format and somehow help them figure out what to print and what not to print. I look forward to seeing how this process unfolds.
Looking at the chart
And also in technology, we pointed out to my oncologist a few weeks ago that there is now so much history of metastases in my brain that the radiologists who read the MRIs and write the reports can’t keep it all straight. They are going from the previous written report, and the narrative format means they miss things. For example instead of following up on a previously-seen “spot,” they forget to check for it at all. Or they call a spot “consistent with previously treated lesion” when it’s a new one, not a previously treated one. So we said there should be a chart or a spreadsheet. And he said, “You’re right, I’ll make one.” And when he was on vacation, he did! A sort of a chronological list with dates and locations and sizes without all the narrative hiding the facts.
So I took that and we are making an even more useful spreadsheet, so each met can be followed from discovery to ZAP and beyond (as it shrinks away). So much fun, this cancer thing!
