Except for complaining about being tired and complain-y, I haven’t blogged much about my health lately. I guess this is mostly because it’s same-old, same-old, and I was determined not to turn my blog into all-cancer-all-the-time after my diagnosis. Still, there are people who come here specifically to read about what’s happening with me health-wise, so I feel a bit obligated to give updates when I have them.
Ever since I started my follow-up chemo regimen in May, my joint pain has been 5-7 on the pain scale. My oncologist said it was probably well-managed on my CHOP-R regimen with the “P” (prednisone) and the steroid in my new regimen (decadron) doesn’t do the same trick. The interesting thing is that the major component of my new regimen is “R” (Rituxan), which is commonly used to treat rheumatoid arthritis. Seems strange that my joint pain would return, doesn’t it?
The pain isn’t unbearable every day, and it’s not even close to what it was like before I was diagnosed with “an unspecified auto-immune disorder” in 2005. Still, it’s uncomfortable. Wakes me up at night. Makes it hard to stand up after being seated for a while. Makes it really uncomfortable to sit in a car for very long. Worst of all, it makes me not want to exercise. Exercise would help the pain, but it hurts too much to exercise. That, my friends, is why I’m quite sure God is a big ol’ practical joker.
My oncologist had kinda blown off my comments about joint pain, so even though I felt she should make some suggestions, I knew I needed to see my rheumatologist if I wanted a doctor who would listen and help me manage the pain. He’s always scheduled quite a ways out, and between the day I made the appointment and today, the day of the appointment, the pain nearly disappeared for a while. I considered cancelling but I’m glad I didn’t.
What I appreciate so much about this doctor is that he asks questions about a lot of areas of my life, not just pain and how I manage the pain. He asks how I am emotionally, what kinds of stresses I have in my life, what my husband would say about me if he were there, etc. He knows that the kind of pain I have can be dramatically changed by things that seem unrelated.
He, too, wondered why Rituxan wasn’t doing a better job with my inflammation. He said Naprosyn was fine if needed (it takes the edge off the pain; I just try not to take it often) and suggested some deep water exercise. I’ve been wanting to do that anyway, so I’m hoping to start next week when the kids are back in school. He also suggested some specialty rehab. I’ll call this week to get that started. I was glad he didn’t just suggest drugs—I don’t want any more drugs.
He also encouraged me to see a shrink. He recommended one when I first saw him in 2005, right after my dad died, and my visits to that therapist became a couple years’ worth of grief counseling. I found it very beneficial. I’m going to try a different doctor this time. I liked the other one but I’ve seen him at functions at my kids’ school and that’s weird now.
The other thing Dr. Rheumy recommended was seeing a mental health nurse practitioner to get my medications figured out. I haven’t talked about depression and anxiety much on my blog—except in a joking way because, like cancer, you gotta laugh at it or it’ll gitcha—but here’s the fact: I deal with depression and anxiety. If you’re gonna go all Tom Cruise on me and tell me what I’m doing wrong, you can fully expect that I’ll flip you off five thousand times as I walk away from you forever. If you think people who take antidepressants are crazy, you are also cordially invited to go screw yourself. If you haven’t dealt with depression and/or anxiety, just do the world a favor and shut your big, fat mouth. And if you’ve been diagnosed with a killer disease and you have to… oh… say… go home to your young children and tell them Mommy might die, you are totally allowed to feel both depression AND anxiety. So says I.
(…Thinking I think I might need to talk to that mental health nurse practitioner about my pre-emptive anger issues too...)
Finally, we spent quite a bit of time trying to figure out what’s gone wrong with my left hand. He did not seem impressed that my oncologist blew it off with a “you probably slept funny.” Although the rheumatologist thinks physical therapy would be good for the long term, he suggested we start with a shot of cortisone. It’s kind of a band-aid fix, but the pain has been severe enough that we need to get rid of that part first. I was lucky enough to get an appointment for tomorrow, so as soon as I’m done with chemo I’ll get my hand poked all over again but with something that should make it hurt less.
He also asked why I didn’t get a port when I started chemo. So I screamed and tore everything off the walls and jumped up and down and cried and screamed some more and then calmly sat down and quoted that guy at the dump on the muffin tops episode of Seinfeld: “That’s what I’d like to know about it.”
Dr. Rheumy gave me five different recommendations for a new primary care physician, so I shouldn’t have to go back to Dr. Jackass again. He also very subtly suggested that I could change my oncologist if I want to, but I really don’t want to. I’m not thrilled with absolutely every move she’s made, but I do trust her with handling the cancer.
My favorite part of the whole appointment was at the end, when the doctor said, “So, we’re NOT sending reports to [Dr. Jackass] anymore then?” and I got to say HELLS YEAH. But I didn’t actually say that because he’s too nice to say the h-e-double-hockeystick word in front of. Also, Jack was with me and he would have told Vic that I said a naughty word. So I said, “No, we don’t need to.”
It was awesome.
So that’s the latest on my health stuff. I’ll have more to say tomorrow after chemo #14 and my cortisone shot.