… so maybe I’ll fill you in on a few details.
I finished up the treatment in BC. Treatment and traveling both went well. The most happiness I got out of it was being told I could eat the full Mediterranean Diet including whole grains, legumes, and 2 servings of fruit a day! I can live with that much better!
I’ll say, though, it is hard to travel post-chemo. Not a fun vacation. Not fun spending the post-chemo days holed up in some room in a house that is not home. Perfectly nice room in a perfectly nice house, but not home.
Then BAM! All the sudden it was Christmas! (Which was lovely and fast!) And then we were scheduled to do a road trip to Arizona, but a variety of things conspired, including just plain exhaustion on both of our parts, so that we bailed on that. And that was a relief. Whew.
So we’ve both been recuperating from the Fall. I have traveled for various treatments and retreats and family trips so much that being home just feels good.
So now we’re post-New Year’s Day. Starting out in 2020. Wondering about the state of the world. Between horrific fires in Australia, to our unhinged “leader” doing something stupid, and even hugely dangerous, at every turn, I find reading any news is not good for my health. Ugh.
But dialing it back down to just me, just here, and just now, the health-status update is that
- I woke up with a killer headache on Sunday, nothing helped, my blood pressure readings have remained in the high to quite high zone, so I went in to Urgent Care to see about getting the BP under control with the idea that that would help the headache. So I got a third BP med, (now Clonidine plus Metoprolol and Lisinopril) and yes, it seems to be bringing it back down into the realm of normal. (I should test it again right now, but NOT after reading the news!) The folks in BC seem to think that as I get farther away from the last Avastin treatment the more back to normal it will get. So I’ll keep watching it. I have to say, high BP headaches are a different animal than the Greenwall Family migraines I’m used to. I’ve had to unlearn some things and learn some new ones about how to deal.
- While I was at Urgent Care they ran a CBC to check my platelets to see if it was safe for me to take aspirin for the headache. I didn’t get the results until the next day but they indicated that they were low enough to not take any aspirin or any other NSAIDS. Glad I hadn’t done that in the meantime.
- Monday I had the post-treatment CT Scan done in order to see effectiveness of treatment. The actual experience is pretty non-eventful: spend the hour ahead of time drinking a special but icky-tasting “potion” of contrast, then get an IV started, then 5 or maybe 10 minutes doing the actual scan. Then wait for the results. No biggie.
- One of the side effects I’m having currently is mouth sores, so I found upon reading online, that there is a type of foam tooth “brush” that is helpful. Grant picked me up some the other day and it really does help keep mouth hygiene a much more comfortable process.
- Today I got an urgent call and text from Dr. G wanting to speak to me, and it turned out to be about the low platelets, that they are not only low but EXTREMELY low: 17,000. He said it would be okay to wait until tomorrow when I’m scheduled to see him anyway to do anything about it, but that it might be necessary to do a transfusion. He said to be careful driving down. (That’s a little sobering!) And my exercise physiologist who I’m also scheduled to see tomorrow said it’s very important to not fall, so no snowshoeing or dangerous activities in the meantime. I think my biggest danger is here at home, cutting myself with a kitchen knife accidentally or having my cat bite or scratch me. So, I’m being careful. I sent in a message afterwards asking whether I should go get the transfusion here yet today but they said the number is not low enough to transfuse, but they’ll recheck it tomorrow. At least I should be on the rebound now post-treatment to getting all those blood numbers up and back to normal.
- In that same call, Dr. G told me that the CT Scan came back clear. So I assume that means NED, no evidence of disease, which was the goal. Now to keep it that way. Yay! And Whew!
- So tomorrow, down to Anschutz for labs, and a follow-up with Dr. G or his PA, Lisa-Marie. And then presumably we’ll talk about starting up the PARP inhibitors, specifically niraparib (trade name Zejula.) (Here’s an article about how promising a treatment it is.) However I’m going to ask if we can wait to start those until my blood numbers have come back up. I have also asked for the perspective of one of the researchers at Clearity Foundation about that too, but haven’t heard back. I had had an earlier conversation with her via email about some things I’ve read about science in this country not being what it used to be, that it has been corrupted by money from Big Pharma and many of the studies are not really even valid. So I asked her opinion about that and she feels that the studies about PARP inhibitors have been replicated sufficiently to be trustworthy. So there is that.
- I will get the large panel of labs drawn next week and see Dr. West the week after that for post-treatment plans about how to stay in the NED range. I’m still struggling to do all the things she would like me to be doing. I’m burned out on it all. So finding some happy medium, good-enough, level of self-care will be what I’m going for.
- Along those lines, reading Anita Moorjani‘s book was helpful. Her experience of an NDE (near death experience) changed her life and reversed her disease, and so she offers some serious insights into what life is really about, and what it’s not about. Good read.
- And finally, I have to say a huge thank you to all who donated to my Fundly site. We surpassed the goal!!! And that helps me pay for the fees they charge as well. Much gratitude!
So that’s that for that for now. I’ll let you know if anything else newsworthy comes out of tomorrow’s appointment. I’m hoping that with an NED result on the CT Scan that the CA-125 will also be in the very low range, but we’ll see.
Take good care. Live well. Love well. Make 2020 all that you hope it will be!