I know a lot of you are curious about how I’ve been doing. I know I’ve been a bit quiet. It’s that I haven’t been feeling well and my desire to do anything computer-y has just gone out the window. And also partly I’m not sure what to tell you.
I had a CA-125 test recently and it came back 923, which is a huge jump up from the 212 or whatever it was before. Which made me feel that oh no, the immunotherapy isn’t working, and I should start thinking seriously about hospice. I’ve gotten my will in order. I’ve been talking with my dad and the cemetery folks about being interred in the family plot and how that would work.
I’ve seen my GI doc, my local oncologist, my primary care physician, interventional radiology people, and talked on the phone with the Mexican oncologist, Dr. Ortega. Mostly the physicians are present and ready to just support me in life here and now as long as possible with the understanding that death is nigh. However, Dr. Ortega does not think automatically that the CA-125 number means cancer increase. I’ve had an abdominal abscess and fistula and so pain and inflammation and he thinks that number reflects that. He has faith in his immunotherapy. So I don’t know quite what to think.
The local oncologist Dr. Scott, has okayed getting a PET scan so we can really see what is going on. That will be next Monday. And she offered another chemo agent which is kind of low grade but also low side effects, and which she has seen help others gain a few more months to maybe a year. I’ve decided to go ahead and do that. Dr. Ortega is in favor of this. It will be another couple weeks before that starts.
Mostly my discomfort abdominally is continual. And I have a hard time with reflux up from the stomach. Anything I drink feels like it comes back up my esophagus and could just come right back up. This make lying down to rest especially hard. I have to basically not eat or drink anything very late into the evening, and hope that whatever I’ve taken in gets processed through and out thoroughly. Additionally I’m taking omeprazole which helps reduce stomach acid production so that my body isn’t creating more fluid and bile which would just sit there in the stomach and want to come back up. It’s a very difficult dance and balance to find. I spend the day sitting up because if I’ve drunk anything at all, for example apple juice, my favorite, there’s just no keeping it down otherwise. Vomiting is my last course relief to just get fluids out of the way, and it happens at least daily if not periodically during the day. It’s a relief, but it’s also a pain. I would so just like to drink something and have it process through without feeling like it’s going to come back up. This is the quality of life issue that is distressing and may or may not have anything direct to do with cancer. But maybe it does, and the chemo will help. We’ll see. I am tired.
Grant is good about continuing to encourage me to see the positive, and to focus on the good and the beautiful and the hopeful. He’s also good about being real with me when I just have to cry because I’m so tired of all of this. We’re continuing to truck on down the road, and we’ll just keep seeing where it leads.
We discuss how much we’ve been thinking about hospice. Basically hospice would mean not treating at all, and treating includes IV nutrition, so basically hospice means subjecting myself to starving to death, presumably under many drugs for comfort.
Or I’ve set up MAID, medically aid in dying, which is medication to hasten the process, but because of my digestive issues that makes it iffy that I would actually absorb the meds correctly. The other option is as an enema but that seems like a horrid way to go.
So I’m hoping the new chemo will give me some more time and comfort for awhile and delay that decision. But there are times when I’m like, this QOL, quality of life, is difficult and why am I still doing this? Hard decision. Grant wants me to stick around awhile longer.
In any case I have to admit that with chronic pain my ability to maintain C-ful-ness is severely restricted. I wish I were better at transcending. But this is hard.
And the state of the world right now is so distressing too, between pandemics, politics, and fires, that sometimes I really wonder if I want to stick around for any of this. Will it get better, or much, much worse? I don’t know.
In any case, this is what has been going on with me lately. Sorry it’s not more uplifting.