One of the things I’m finding hardest to deal with is feeling pretty good one day and then feeling rotten the next. It has do to with the shot of Velcade I get on Tuesday mornings. It makes me fatigued and blah-feeling for the next 3 days. Plus it seems to amp up my pain by about 40%. The former I understand, the latter I really don’t, my best theory being that it is harder to block off pain when you are feeling tired and blah than when you’re not.
I used some Python and the on-line site Plotly to make this chart of (roughly) how I feel during a week. Obviously the numbers on the y-axis are purely arbitrary, it’s the difference between them day-by-day that matters. (Click on the image if you want to see the cool things a Plotly chart can do.)
https://plot.ly/~SSShupe/126
Sundays and Mondays are better; Wednesdays and Thursdays are worse; the other days are in-between.
That said, there is good news to share. We moved into our new place over the weekend (a condo we own where my Mom lived before she died), and it is a huge improvement over our old place. It’s bigger (and much bigger-feeling due to a more open layout), brighter (south-facing with big sliding glass windows in the living room and master bedroom), more private, quieter, and we each have a covered parking spot. Suzie spent the last month working with a contractor to significantly spiff the place up, and she did a fabulous job … it doesn’t look much like it did before. All of her selections for fixtures and improvements were spot on, and they turned out beautifully. Best of all, we have a big patio out front where we can (and do!) sit and read or eat or just relax.
As much as I felt uncomfortable, unsettled, and imprisoned in the old apartment, I feel completely comfortable, settled, in-place, and relaxed here. It’s marvelous, and a great mood booster. Here’s a phone photo taken from our patio; nothing like our old view, but still, there’s green and trees and sky, where in our old place there was nothing.
View from our Patio
More good news: My pain is decreasing, more slowly than I’d like, but still decreasing. I can walk now without having to use a cane, and am taking 20-30 minute walks most days. I even have gotten to the gym a few times; the recumbent bicycle provides good exercise with no pain, and it’s felt good to lift a few weights, even lighter ones. I figure the little I do is better than doing nothing. And it feels good.
Last week Suzie and I went to Palo Alto to meet with the doctor and staff at the Stanford Medical Center who will be doing my stem cell transplant in June or July. Very impressive. The doctor took almost two hours with us, gave us a ton of good information, and said I was an excellent candidate for the transplant. He also said something very encouraging — in his view, if after the transplant I can have a period of remission of a sufficient length (3-4 years), he thinks that when the myeloma comes back there will be new, very effective immunotherapy treatments developed and approved, which use your body’s own immune system to fight the cancer cells. Not a sure thing, of course, but he did say that there were several myeloma-specific therapies being tested, and that many seemed promising.
The downside to the stem cell transplant is that it is dangerous and has horrible side effects. After harvesting your stem cells, the give you a huge dose of very strong chemotherapy drugs that basically kills off your bone marrow (and thus your immune system). The stem cells are then re-infused into your bloodstream, and migrate into the bone marrow, where they reconstruct your immune system from scratch. That takes time, and in the interim the risk of infection is very high. (He quoted a 1% mortality rate from the procedure.) Apparently for about 7-10 days after the chemo, side effects are awful — nausea, vomiting, extremely painful throat and esophagus, extreme fatigue, hair loss. Sounds like torture, and for an extended period after that, your immune system is still extremely compromised, meaning that you have to stay indoors most of the time and even then be very vigilant. They also require that you be within a 20 minute drive of the hospital, which means that for about 4-6 weeks we’ll have to find a place to live in Palo Alto or nearby. That won’t be fun, but it is what it is.
And yet more good news (for me anyway): I’ve been feeling enough better to start taking some pictures again, and to get back to my Python programming a little bit. I can’t do that on the bad days; on those I’ve reverted back to something I used to love to do when I was younger, which is reading science fiction novels. Real science fiction, none of this fantasy crap. I know, probably not the best use of my time, but cut me some slack. So far I’m almost through two of them, one of them (The Gone World) was pretty good but stupidly violent, the second (Noumenon), which I’m half through, is more idealistic but not entirely realistic. I know, you’re laughing, right, since it’s science fiction, but what I mean is that to me it’s unrealistic in that the people in the story don’t behave in the situation like I think people would behave. I’m also reading some more substantial books, including Steven Pinker’s new Enlightenment Now: The Case for Reason, Science, Humanism, and Progress. (Thanks to my friend Marsha for the gift card used for these purchases!)
As always, my continued thanks to all my friends who have been so supportive through all of this. It matters a ton to me.
Since I mentioned pictures, here are a few. Enjoy. Click on any picture for a larger version.
Clouds over Richmond:
Driving to Berkeley, Clouds over SF Bay:
Tilden Park Botanical Garden Stream:
Tilden Park Botanical Garden Trees:
Categories: SSS Health