I tried to post an update last week, but all my attempts came out too whiny — and worse, whiny in an obnoxious level of detail. Not that I don’t have good reason to whine: Last week was the worst week I’ve ever had in my life, resulting from a combination of ongoing severe pain in my leg, moderate/tolerable but nonetheless draining impacts from one of the chemo drugs, plus a sense that I was having to fight Kaiser to pay attention to my pain situation. I was exhausted, depressed, and, at times, hopeless, wondering if my situation was ever going to get better, or if I’d have to spend the rest of my life in this misery.
But things are better this week. I was referred to a “palliative care” team at Kaiser (and able to obtain an early appointment, after being told the first one available was March 20) and met with them yesterday. The doctor is an expert on pain management, and provided me with slightly stronger pain medicine. More importantly, the doctor and the social worker who was at the appointment too reminded me that my energy reserves are much, much lower now than before, that I have to be careful to conserve them, and that severe pain depletes those reserves faster than anything else, making it important to stay on top of the pain and not try to “tough it out.” They also reminded me that the pain will reduce over time as the chemotherapy continues to kill off cells in the tumor causing the pain, and as the blood clot in my leg slowly dissolves. All of which I already knew intellectually, but hearing it from someone else helped me know it in a more “gut,” emotional way. They made me hopeful again, and gave me confidence that my pain can be managed in the short term, and will eventually get better over time.
[As a perhaps-slightly-political aside, this experience, where someone like me, normally optimistic (no sneers, at base that’s true), self sufficient, and resourceful, found himself close to feeling exhausted and without the energy to “carry on the fight,” has made me think of all the people out there who, for whatever reasons, find themselves feeling that way most or all of the time. Because it was somewhat my personal experience in life, I’ve always been a little inclined toward the “anyone can pull themselves up by their bootstraps if they really want to” camp. But pulling requires energy, it requires force, it requires reserves of strength, and there are a set of people who just don’t have those. Of course there are some people who are just plain lazy, who make bad decisions, who just prefer to slide. But I suspect that the people in the worst situations are those who for whatever reason just don’t have the energy, who aren’t able to summon the force, who can’t overcome feeling so completely hopeless and battered down, to create a better situation for themselves. We who have not felt that, who have not been in such a dark place, should be wary of making moral judgments about those who are, if only because we may find ourselves there some day too. End of aside.]
Our Building at the Spring Club Apartments
The other good news is that we are going to be moving out of our dismal (although very “nice” in a pure facilities sense) apartment and back into the condo we bought for my Mom when she moved from the Midwest about 20 years ago. The existing tenant found a new place to live in Rincon Valley, closer to her children, and the management at our apartment complex allowed us out of our lease early in view of our circumstances. The condo will be a great improvement for us: familiar (for our boys, it’s the one remaining home in Santa Rosa from their childhood, they spent many hours there being pampered by their Nana); a smaller and more private location; larger; no stairs; south-facing and thus very light inside; a large patio outside in a pretty garden setting; and two covered parking spaces. The downside is that it is an over-55-only complex, and the other residents sometimes get a little too much in your business, but we can handle that. Move-in will be toward the end of March, not far away.
I may have mentioned that on Tuesdays I get a shot of one of the chemo drugs called Velcade. That happened this morning, and I can already feel it creeping into my system and starting to drag me down. Compared to others undergoing chemo, I have no right to complain — I have no nausea, just 2 or 3 days of feeling slightly sick, having more pain in my leg, feeling chilly all the time, and being very fatigued. When combined with the pain, last week it kicked my butt a little, but this week I’m ready for it. Ask me next Monday.
Once again, to all the friends and co-workers who have offered words of support, who have given me rides and taken me to lunches, who have cooked and delivered amazing delicious dinners for me and Suzie, thank you so much for your time, your caring, and your concern. It’s been amazing, and so very much appreciated.
Categories: SSS Health