The last time I wrote an update on my health, loyal reader, things weren’t that great. I was weak and depressed, a persistent pain in my leg tormented me and wouldn’t let me sleep much. Leukemia is indeed more active. My situation prompted my doctor to refer me to the palliative care team and our first meeting with them was on Wednesday.
I was looking forward to it, but Erica was worried. After all, palliative care is basically the last stage. Its specialty is taking care of people in the end-of-life process. They aren’t there to cure, but to keep you comfortable until you die. It’s not a very fun thing to consider.
And yet, once we did have our consultation, we were very reassured. Palliative care is much less scary than it seems. Their focus on comfort rather than cure means quality of life over quantity. But the best part of it is how comprehensive it is: it’s not just about relieving physical pain. It’s also about providing emotional, mental and spiritual support both for myself and for Erica, my main caregiver. The latter is very important to me.
My greatest fear on this whole journey has always been ending up in the hospital and dying there away from my home, my bed, my wife and my cats. But the palliative care team reassured us that unless something catastrophic requiring very specialized equipment happens, I can pass away in comfort at home. And that’s not necessarily my only choice.
If I do feel the need to, I can have a bed in their special unit at the L.A. Miller centre. There they have 10 private rooms that differ from hospital rooms. It’s a personal space that can be arranged with almost anything I want from home. The visiting rules are non-restrictive, meaning I can have as many visitors as I want whenever I want. Even pets can visit. Erica can stay overnight with me. It sounds much better than I imagined. Best of all, if I don’t want to end my days there, they still have an emergency bed/room that I can avail myself of if for some reason I need to for a short time.
I still intend to spend my remaining time at home, but it’s good to know the alternative isn’t as sad as I thought.
In the meantime, the palliative care people and my doctor have put together a new medicine regimen that I’ve been following since Wednesday. I now take a bit of steroids in the morning to fight the graft-vs-host effect on my eyes and the rest of my body. I also take morphine pills for the pain in my leg and eyes. Various other pills combat the side-effects of those two. I also was prescribed an anti-depressant in case my mood turns back to despair and some Ativan in case of anxiety attack.
This new regimen just started a few days ago and will need tweaking, but I am very happy with the results. The steroids give me a good energy boost that gets me through the day without wanting to stay in bed for it. The downside is that it weakens my muscles quite a bit, but that’s what my cane is for. The morphine doesn’t seem quite strong enough in dosage to compensate entirely for my leg but a couple of extra “rescue” doses at least helps me sleep soundly at night. The last two nights I’ve had, I haven’t woken up mid-sleep. That hadn’t happened in many, many weeks.
So that is the situation now, a vast improvement in my quality of life in spite of the leukemia gradually doing its thing. It has allowed me to enjoy (in a reasonable manner) my friend’s bachelor party and will me the mental and physical boost needed to participate in the wedding next week. After that, I will happily enjoy however many weeks or months I can with those I love, here in my home. And that’s all I really want.