cancer – day 278

Hmmm, catch up the blog, catch up the blog . . . I don’t know where to start.

The Dec. 11 blog entry was just such a fitting ending, I didn’t want to write any more. Then I went home for Christmas and didn’t do a whole lot to be posting about. I played the flute at Mom’s church for a thing her choir did, and again on Christmas Eve. Both times were such a neat experience (I especially love the sound of a flute with a pipe organ, there’s just something about it), both because I was actually able to do it (granted, I wasn’t in top form) and because they just appreciated it soooo much. Mom was still getting comments and compliments almost a month later. 🙂

My parents were in absolute shock that I came home earlier than they expected. I literally went straight from my last radiation session to the airport and was at their house in South Dakota that night. Mom wasn’t home yet from some thing, and I called Dad from the rental car when I was about a mile away. We chatted a little bit, and I was trying to figure out how to do the surprise . . . ring the doorbell (did that before), tell him on the phone that I was there . . . and then I got close to their house and saw that they had Christmas lights ridiculously high in the tree on the corner and I interrupted Dad. “How did you get the Christmas lights so high up in the tree?” Silence. “What?” he asks. So I say it again. I could practically hear the wheels turning in his head, trying to remember if they’d told me about the lights, or sent me a photo, and then he asked “How did you know the lights are so high?” “Because I just turned the corner and I’m pulling into the driveway.” Pause. “Well . . . you little s*&^!!” I was standing on the front porch ringing the bell for like a minute in the freezing cold while he was disbelievingly still on the phone with me. It was pretty funny. Mom got home about twenty minutes later, and walked in asking Dad who’s car was parked in front of the house. And, get this, this is the funniest part of the story. She was carrying this silver spoon, and when she got in the door and saw me she froze in disbelief . . . and the spoon fell from her hand. It was classic. Anyway, they were really surprised, and it was great to have a few extra days home with them.

Christmas Day was the worst for neuropathy pain, although there were lots of times it was terrible when I was at Mom & Dad’s. The cold seemed to exacerbate things. But Christmas Day we were up really early for my nieces and nephew of course, and then opening packages became something of a cruel torture for my stupid hands. Anything edgy or sharp is still a big problem to handle. And there are lots of days where even the pressure of having socks on makes my feet burn more than I can stand. But there was an hour or so on Christmas where the neuropathy was just so unbearable I couldn’t keep the tears back and I had to hide out a while to recover. It was a really tough moment for my Mom because there wasn’t anything she could do for me, and I could see on her face how horrible it was for her to see me in so much pain.

The neuropathy is unfortunately just as bad now as it was during chemo. It ranges from bad to awful to unbearable burning in my hands and feet. It’s hard to handle little stuff with my hands, anything hot or cold, anything heavy I have to grip, anything with ridges or edges (like the cap of a milk jug). Hot and cold also burn in my mouth, so I can’t have any ice cream or ice water, or tea or food that is hot. Standing a long time is a very bad thing . . . I was standing for about 30 minutes a few evenings ago chatting with a couple people, and the next morning I could hardly walk. Mousing (holding the mouse, clicking and dragging) and typing exacerbate the burning in my hands, but I’m getting more used to typing with the tips of my fingernails so I’m not pounding on my fingertips all day.

I went back to work full time on January 5. It’s very likely a big part of why the neuropathy in my hands has been even more painful the last couple weeks. I came back at the busiest time of the year, and I just loathe missing deadlines or putting out anything less than a top quality product, so I ended up working a LOT more hours than I’m actually capable of yet. I’m also teaching this term, and wow do my grad students have issues working together in groups. But I’ll save all that for another blog.

Other health stuff . . . the medical oncologist (Niten Rohatgi) told me to start Tamoxifen, but then the pharmacy called and said that Tomaxifen has an interaction with my heart medication, and they also said they talked to my doctor (Rohatgi) and he told them to stop my heart medicine!! I was less than thrilled to have a medical oncologist making decisions that belong to my cardiologist, and I spent a day in phone tag with the oncologist (seriously, five times back and forth) to finally talk to him to find out he had no idea that Tamoxifen and Norpace don’t mix. I have some reservations about this new medical oncologist, I’m not sure I trust him yet, though he is supposed to be a breast cancer specialist and is well-respected medically. I see him again next week, when I need to make a decision about whether to go ahead with Tamoxifen (the only hormone drug that works at all in cancer prevention in young women), or to possibly do something to make me post-menopausal (like a monthly shot that suppresses ovary function) so that they have some options with multiple aromatase inhibitors that don’t have as many side effects or drug interactions as Tamoxifen. So, we’ll see.

I’m on a flight to Atlanta for a team meeting and the quarterly business meeting. Air travel has been pretty miserable, and I don’t think I should be doing it. But both this week and last week’s travel were commitments I made back in October, never expecting to still be having so much physical difficulty now. And the reason I committed to the travel was because I told people I would be there and it’s important for them to see that I’m doing better (at least better than during chemo!). it’s also reallllyyyyy nice to see these old colleagues that have been my friends for so many years now. It’s like I owe it to the people who care about me to keep trying.

I don’t mean to paint such an ugly picture of how I’m doing now. I am infinitely relieved that chemo and radiation are over, and that I left Sacramento and am living back in my house in the forest. It’s remote, and beautiful, and quiet, and sooo much more restful with my cats. Well, my two cats and my three fish. More on that later too, a really funny Mizzou story . . .

So, ok, maybe there is enough going on to keep blogging. It’s not all medical stuff, but then again, my blog was never focused on just that anyway.