I thought I’d give you all a short update on my status. My brain feels like it’s at 60% capacity and the days since I started this process have started to run together, so bear with me.
The short version is that the past 5 days have been very difficult for me, even though, from what I can tell, I’ve managed to avoid the worst side effects of the chemo treatment.
Friday I went in to the Stanford Cancer Center and got a catheter installed, then later got hooked up through it to an obnoxious little portable IV pump that the Stanford folks called a “baby,” which I had to stay connected to for 3 days, even at night. The purpose of this was to infuse me with fluids.
On Saturday I spent 8 hours getting the chemo and more fluids. That went fine and I went back to our apartment in Menlo Park Saturday night.
All the IV fluids I’d received are supposed to cause you to pee semi-constantly, in order to minimize the risk of bladder damage that excretion of the chemo agent can cause. But for some reason, all those IV fluids didn’t run through me the way they were supposed to. Instead, they stayed in my body and caused me to balloon up from 230 pounds to 255 pounds in two days. My face and body puffed up in a not-attractive way, leading to the lack of photos in this post.
On Sunday my two sons Will and Andrew came down from Davis. Andrew bought a new hair clipper and had a fun time shaving my head with it (yes, prepare yourselves for that). He also shaved his head in solidarity, a sweet gesture that meant a lot to me.
I started feeling crummy as Sunday went on. All the extra water I was carrying caused my sodium levels to drop, which muddled my brain, making me feel disjointed, spacey, and slightly confused, just as I was getting a mega-dose of chemo on Saturday — which also muddled my brain. A difficult double-whammy for someone who likes to think clearly as much as I do. By Sunday evening I was in bad shape, feeling completely out of it.
On Monday Suzie and I drove back to Santa Rosa. The usual horrible traffic, even in the middle of the day, made it a two-hour plus trip. When we got back, I started experiencing an unpleasant but typical chemo effect that I won’t describe, which fortunately was controlled by medication and was relatively short-lived.
I’m grateful and lucky that I haven’t had one bit of nausea or vomiting. But I’ve been feeling extremely rotten and tired, with very little energy. Frustratingly, the times when I feel a bit better wax and wane over a few minutes time — just when I think, “Oh, I’m feeling better,” I start to feel worse again.
For the first time, I’m having a few periods of genuine despair. At times these past 5 days I’ve felt as low as I have since the start of this whole MM thing, very disheartened, wondering if all this will ever end. I look at myself, my weird bald head and the two strange tubes coming out of my chest, and feel as sense of disassociation. I can’t go outside without wearing a large HEPA mask that makes me look alien and freaky (even though I’ve tricked out the filters with Giants covers). I think of all the incredible burdens I’ve put on Suzie, of how this illness has taken away the new phase in our life we were just poised to start, and feel guilt and sadness. I’ve managed to avoid it until now, but perhaps because I’m so tired, feeling so out of it, I don’t have the resources to avoid some self-pity, to avoid asking, “Why did this happen to me? Why did this happen to me?” I know there’s no answer to that, I know things will get better (just last week I felt great), and I know I’m feeling these things only because my energy and stamina are way down, but still, I can’t keep them from surfacing sometimes.
But enough of that. One of the few interesting and remarkable things about the last few days is that I have had the most amazing, detailed, memorable, interesting dreams I have ever had in my life. Dreams that truly seem to be almost-real, dreams that carry over night-to-night, wild and engaging, close to fully-formed alternate realities. Dreams about a kind of physical singularity caused by the technology of a company selling Westworld-like experiences; dreams about an alternative Paris; dreams about an alternative San Francisco; dreams of living in a house that is ours-but-yet-not-ours — dreams so compelling, so encompassing, so utterly complete-in-themselves. Remarkable. It makes me anticipate going to sleep each night, just to see what’s next.
That’s the scoop. As for the next steps, the purpose of the chemo was to prepare my bone marrow to propagate stem cells into my blood stream. Suzie gives me two shots each day of an agent that causes bone marrow to amp up the production of blood cells and stem cells. Starting Friday, I’ll go to Kaiser to get labs drawn that will inform the Stanford folks about the level of stem cells in my blood. When that level is sufficiently high, I’ll return to Stanford and get hooked up for 1-3 days to a machine that will take the stem cells out of my blood. Those cells will be preserved and frozen for use in the transplant, which will happen in late July.
For me, this means I’ll feel worse for a few days as my counts continue to drop, then better and better as my blood counts rise. After the stem cells get harvested, I’ll have a week or so where I should feel fine. I’m very much looking forward to that. I need the break.
Categories: SSS Health