I don't know why it's taken me so long to update my blog. I got this idea that people were saying so many nice things about it, I started feeling the pressure of making every post perfect and heartfelt and humorous. So, in order not to be affected by these particular feelings, I figured I'd commit to making this post really sucky.
A lot has happened since the beginning of January, so I'm just going to give you the nutshell(s). Last time I wrote, I was participating in a clinical trial at the Sarah Cannon Blood Cancer Institute. Well, it didn't work. There were only three people in my cohort, and I was the only one for whom the drug didn't work. So that was pretty disappointing. The only good thing about this trial was the lack of side effects. Except for a lack of appetite, which sort of ruined my birthday. My parents were determined to take Brent and I out to a nice restaurant, but I was so exhausted and so not in the mood for food that we ended up ordering Chinese.
After the trial, I went back to Dr. Bowles to discuss other options. The next most promising option was a combination of azacitidine and veneteclax. I don't know if I spelled those right, and I'm not even going to look them up. This regimen is used mostly for older people who can't tolerate the harsh chemo that is normally given to younger people. It also seems to show promise for people with genetics like mine. Here's what the first cycle looked like: Brent drove me to the VA infusion clinic for five days in a row. I was told the azacitidine would be given in subcutaneous shots. I wasn't told it would be given in 3 shots. So by the end of the first five days I had 15 tender lumps spread out all over my body. It was supposed to be a seven day cycle, but I ended up skipping the last two days because I was surprised by the bruises and even more surprised by the nausea.
This was about the time that a lot of things started happening quickly. I started feeling sick enough that I felt it necessary to be admitted to the hospital. But, I told Dr. Bowles I couldn't handle the food at the VA. So I ended up checking myself in to UCHealth instead. Since Dr. Bowles is affiliated with them, it wasn't such a big deal, but it did cause some confusion. And it wasn't too long before Dr. Pollyea offered to take over my case.
A few other things happened around this time that drastically changed my experience. I called my mom asking if I could borrow my grandmas's old wheelchair. I just wanted to be able to walk (wheel) around Target or any other place without feeling like I constantly needed to sit down. Then during my next hospital stay I was prescribed oxygen. I had pericarditis, which made breathing a little more difficult. I also ended up with an enlarged spleen, which landed me in the hospital again for a while, and got me on to a lot more pain medication. To top it off, I was set up with hospice care. I feel the need to qualify this by saying the VA offers hospice care whether or not someone has "given up" on finding a cure for their illness. I can try different drugs and participate in trials and do whatever I want and still qualify for hospice.
Anyway, with the wheelchair, the oxygen, the pericarditis, the enlarged spleen, and the hospice care, I feel quite a bit more decrepit than I did before. I wasn't even able to get out of bed on my own in the hospital. One time I couldn't hold it long enough and had to use a bed pan.
So, drugs are weird. I have a hard time figuring out if what I'm feeling is the disease or the treatment. Am I exhausted because I have leukemia or because I take all these drugs? One thing I know for sure is the delusional dreams I had in the hospital were most certainly due too drugs. David was staying overnight in my room with me when I had the first such dream. I woke up hallucinating that I was listening to a radio broadcast. In Russia. Had we been kidnapped? The radio guy was saying that the city was being taken over by terrorists who were only going into movie theaters showing a certain movie and attacking people. For some reason I believed I was in such a theater, and they were coming to get me. I didn't know what to do, so I woke up David and tried to explain to him that we were in danger. It didn't take too long for me to realize that I was an idiot. It took a little longer for me to convince David I didn't need a straitjacket.
I hope you're enjoying all the spring blossoms!
A lot has happened since the beginning of January, so I'm just going to give you the nutshell(s). Last time I wrote, I was participating in a clinical trial at the Sarah Cannon Blood Cancer Institute. Well, it didn't work. There were only three people in my cohort, and I was the only one for whom the drug didn't work. So that was pretty disappointing. The only good thing about this trial was the lack of side effects. Except for a lack of appetite, which sort of ruined my birthday. My parents were determined to take Brent and I out to a nice restaurant, but I was so exhausted and so not in the mood for food that we ended up ordering Chinese.
After the trial, I went back to Dr. Bowles to discuss other options. The next most promising option was a combination of azacitidine and veneteclax. I don't know if I spelled those right, and I'm not even going to look them up. This regimen is used mostly for older people who can't tolerate the harsh chemo that is normally given to younger people. It also seems to show promise for people with genetics like mine. Here's what the first cycle looked like: Brent drove me to the VA infusion clinic for five days in a row. I was told the azacitidine would be given in subcutaneous shots. I wasn't told it would be given in 3 shots. So by the end of the first five days I had 15 tender lumps spread out all over my body. It was supposed to be a seven day cycle, but I ended up skipping the last two days because I was surprised by the bruises and even more surprised by the nausea.
This was about the time that a lot of things started happening quickly. I started feeling sick enough that I felt it necessary to be admitted to the hospital. But, I told Dr. Bowles I couldn't handle the food at the VA. So I ended up checking myself in to UCHealth instead. Since Dr. Bowles is affiliated with them, it wasn't such a big deal, but it did cause some confusion. And it wasn't too long before Dr. Pollyea offered to take over my case.
A few other things happened around this time that drastically changed my experience. I called my mom asking if I could borrow my grandmas's old wheelchair. I just wanted to be able to walk (wheel) around Target or any other place without feeling like I constantly needed to sit down. Then during my next hospital stay I was prescribed oxygen. I had pericarditis, which made breathing a little more difficult. I also ended up with an enlarged spleen, which landed me in the hospital again for a while, and got me on to a lot more pain medication. To top it off, I was set up with hospice care. I feel the need to qualify this by saying the VA offers hospice care whether or not someone has "given up" on finding a cure for their illness. I can try different drugs and participate in trials and do whatever I want and still qualify for hospice.
Anyway, with the wheelchair, the oxygen, the pericarditis, the enlarged spleen, and the hospice care, I feel quite a bit more decrepit than I did before. I wasn't even able to get out of bed on my own in the hospital. One time I couldn't hold it long enough and had to use a bed pan.
So, drugs are weird. I have a hard time figuring out if what I'm feeling is the disease or the treatment. Am I exhausted because I have leukemia or because I take all these drugs? One thing I know for sure is the delusional dreams I had in the hospital were most certainly due too drugs. David was staying overnight in my room with me when I had the first such dream. I woke up hallucinating that I was listening to a radio broadcast. In Russia. Had we been kidnapped? The radio guy was saying that the city was being taken over by terrorists who were only going into movie theaters showing a certain movie and attacking people. For some reason I believed I was in such a theater, and they were coming to get me. I didn't know what to do, so I woke up David and tried to explain to him that we were in danger. It didn't take too long for me to realize that I was an idiot. It took a little longer for me to convince David I didn't need a straitjacket.
I hope you're enjoying all the spring blossoms!
I'm always glad to see your blog pop into my inbox and I'm glad you didn't get kidnapped by Russians. Thanks for sharing the update <3
ReplyDeleteSarah,
ReplyDeleteIt is good to see your post. I am glad that your sense of humor is still intact.
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Peace,