Despite some recent health setbacks, I’m not going to start up the weekly updates tab again. Instead, I’ve decided to write a post and then put some health updates at the end for those interested. If you’re mostly concerned with the health update, then jump down to the writing below the 2nd divider.
I’ve been thinking a lot about suffering since New Year’s Day. I’ve endured my own small form of suffering (more on that below the divider) and I’ve read some fascinating ideas about the subject.
Previously, I’ve mentioned suffering in a post with some quotes and anecdotes from Maharajji. “I love suffering. It brings me closer to God,” he is quoted as saying. As I deal with my small issue and think about my trials since last April, I can realize the truth found in that statement. There is something very real about suffering. It forces you to be in the moment. I read recently that some mystics have thought that all suffering is the same, that there is only one suffering. When you suffer, it’s almost a sacred and communal act.
I attended a funeral in late Summer. Even though I wasn’t close to the person the service was for, I could feel the emotion in the room. The sadness was palpable and authentic. It was the sort of religious and spiritual feeling you can’t get in a weekly routine church service. It was pure, and in reminding me of my trials since April, almost addictive. I am not a masochist and I’m not advocating for seeking out suffering– I think that would be a sort of disingenuous and synthetic form of suffering. Not the sort of suffering that taps into a real one suffering.
In the novel Fight Club (be warned, probably a TV-MA read), the main character is addicted to attending support groups for any sort of addiction– AA, gamblers’ anonymous, over-eaters’ anonymous, etc. The character is feeding off the of the very real suffering he is hearing about in these meetings. It’s the only taste of something authentic and real in his post-modern, capitalist-driven, Ikea-curated life. Of course, like my opinions above, he is not really escaping his material predicament, he’s merely diluting it, and the rest of the novel is about the dark forms of self-identification he undergoes to find his own identity, not someone else’s.
Undergoing my small form of suffering now, I see people passing by, or on television, and I think, “It must be nice not to have your stomach tearing you up inside your body.” I do want this suffering to pass. I’m not enjoying it. But would you want to hang out or be around someone who has never suffered in their entire life? Someone who has “crushed it” at every turn of his or her life? The person that has it all together and always has everything figured out? Have you ever met a person like that at a party or an event? There’s a word for that sort of person. Insufferable.
So here’s the health update part.
Since New Year’s Day, I’ve been experiencing this nagging pain in my stomach and my digestion has not been well. I’ve been losing my appetite and losing interest in food during meals. I’ve lost some weight and at this point, I don’t need to lose anymore weight. It’s very similar to what was happening to me back in September, when I was first diagnosed with immunotherapy-induced hepatitis. But this time, I’m very functional. I don’t have a fever, I’m not crawling into the fetal position and crying for help. It’s just a painful, nagging feeling I experience all the time when I’m awake. But at it’s worse, it did cause me to feel disoriented and experience some head issues. Paige thought I should not be driving and I reluctantly agreed. With all of this happening, my mind was racing with what the cause could be and I was fearing all sorts of possible scenarios.
Fortunately, I had an appointment with my oncologist last week and his thought is that this is related to the immunotherapy-incuded hepatitis and not something new. (And side-effects to the immunotherapy are actually a good thing because it means that my body is responding to it and it’s working.) I have an appointment with a GI in February, just-in-case, but the timing of this pain does coincide with a reduced amount of steroid I was taking daily.
“Taking daily steroids? But you were done with those!” I hear you saying. Well, not really. I was off for 5 days in late November (when I stopped my updates) and started not feeling well. It was recommended I go back up to 5mg of steroids per day and taper down every two weeks. I didn’t write about this since I thought this was just another small blip and more of the same– hardly worth mentioning. But New Year’s Day I tapered down from 3mg to 2mg and that’s when all of the pain started, so it does make sense when we put it all together.
I am fine taking 5mg of steroids indefinitely to make this feeling go away. 5mg (for me) is a small dose and doesn’t affect my sleep. I still can’t quite drink coffee yet, but I think that will come in time. The disorientation and head issues have gone away completely and I am able to drive again.
The pain is not going away quickly, or overnight like previous steroid regimens, but I am feeling the pain and troubled digestion very gradually fade away. It’s very slow improvement, but I’m happy to have any improvement.