Monday, December 29, 2014

No News is Good News

I know it's been awhile since I updated the blog, which means it's been awhile since I've updated anyone on my health issues. The positive side of that is simply that I've not had many issues to report. The negative side is sometimes a long abandoned cancer blog is worrisome. In this case though, I was caught up in the whirlwind of being relatively healthy and living the life that affords.

On December 16th I went for yet another CT scan (PET scans are still not covered by insurance). The scans themselves feel very routine at this point, but I'm always nervous about what the results will be. In fact, I'm usually convinced that I've ridden my luck as far as it will take me and that this next scan probably will be bad. I'm always hopeful for good results, but always bracing myself for bad.

This scan was yet another clean result. Nothing to worry about. No need to further investigate anything with a PET scan. My doctor has so much confidence in this and the last several good scans, he is pushing my scan schedule back to every 6 months. I've been going for scans every 3 months for years now. Once, we said we were going to move it back to 6 month scans if my results were good, but it turned out they were not. Now though, my doctor feels like my continued lack of cancer warrants delaying the scans. It's both a blessing (health-wise and financially) and a curse (6 months is a long time to wonder if perhaps the cancer is sneakily re-growing), but definitely a move in the right direction.

For those who have been following along more closely (in real-life or on Facebook), I also had a bout with GvH. The lining of my mouth became so raw that even drinking water was painful. I was put on 60mg of prednisone (a steroid) a day, but not before losing even more weight. This is a large dose of steroids and it did get the GvH under control but it also had (fully expected) consequences.

The one I think is most noticeable is often called moon face. I've experienced it (much more severely) before. I'm overly self-conscious about this, even though it's relatively mild this go round. Other effects include a significant loss of strength, an inability to sleep, an accumulation of fat cells in the belly, and my sense of taste being screwed up (things don't taste like they're supposed to taste).

No where near as much moon face as 2012.
I've been on the steroids for months now, because you have to slowly taper off of them. I was down to 10mg/day but stalled out there for several weeks because my mouth and skin looked like the GvH was trying to flare up again. Finally at my last appointment the doctor told me to taper to 5mg/day. I've already noticed differences, both in the GvH (which is persistently a pain in the arse) and in the negative effects.

During the recent period when my GvH was the worst, I wasn't able to eat properly. We relied on things like Carnation instant breakfast to get the nutrients I needed, but that wasn't quite enough. I was essentially malnourished for several weeks because I *couldn't* eat (oh how I tried). During that time my fingernail growth was thin and brittle. Now my nails are growing out and that paper-thin nail is at my fingertips. It's frustrating because I can see where the healthy nail begins again and can hardly wait to have strong, normal nails.

Lots of other (much more interesting) things have been going on as well. I have a new job, which is wonderful. A new boyfriend, who loves and looks out for me. Brynn is as stubborn as always, but is growing into a young woman I'm proud of (if also infinitely frustrated with). Those are all things for other blogs...or perhaps just for living and enjoying and learning and growing. If I'm busy doing those things and don't make it back to to blog too often, just assume no news is good news.

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