I had a CT scan yesterday which went pretty well as far as I could tell, and then I had a PT appt after that. My physical therapist moaned in dismay when I updated her on all the lymphedema happenings because she'd last seen me in November and the swelling hadn't really picked up yet then.
So we got to work. I got a Reduction Kit. Its job, while it's worn 23 of 24 hours a day, is to more seriously squeeze my arm to help the fluid get where it needs to go. The compression sleeve I'd been wearing was more of a maintenance sleeve and we've gone past maintaining and into the realm of "let's reverse this process."
I now have in my possession two soft fabric sleeves with thumb holes. I slide into one of them and then add this velcro contraption over top. It has 8 separate sections to pull snugly over the 2 bands inside. She asked, "where can I number them so that they're unobtrusive?"
"Oh no. I work in a preschool. Number those suckers right on there and we will practice counting!"
I've only slept in it for one night at this point and I have to say that I got tangled in the covers a little bit less than I expected. Wardrobe might be a bit tricky for the month that I'm to wear it. Today I wore a tank top with a loose, drapey, poncho type sweater over it. Blouses are not going to work right now as they were already tight over the compression sleeve and this is substantially more bulky.
I was resigned to wearing it forever, so I asked, "won't my skin get pretty wimpy if it never sees the sun and doesn't get out in the fresh air?" She was horrified and corrected me immediately, "oh! I'm SO sorry. This is only a 2-4 week thing, not a forever thing! We just need to reduce the fluid and get that skin soft again. This isn't the rest of your life!"
Whew.
Thankfully, it's still going to be wintry for awhile in Ohio, despite the 65 degrees it hit yesterday, so I'll be able to get away with tank tops and sweaters, I think.
Today, the plastic surgery team meets to go over my CT results and my measurements and all that jazz to see where my lymph system or circulatory system is having trouble. They had contrast in that IV yesterday and will hopefully be able to see "where the dam is spilling" or where things are compressed to the point they're draining ineffectively. I sure hope it showed something! Then they hope to come up with a plan for how to help me, including surgery if needed. They talked about how they'd most likely need to transfer skin from my back to the area that's been radiated twice so they have healthy tissue to work with as they clean up whatever is happening in there. I am not even going to try to speculate what that all involves, but I do know that removing lymph nodes from my belly (where they don't really do much) into my right arm is a possibility. Beyond that, I decided I'll just wait and see because someone on that panel may say, "hey, I read about XYZ so maybe you could try that with her!" No sense in getting stressed about it before any of it has to happen.
Meanwhile, none of my three year olds today asked about my new sleeve, though I am sure the majority of my fours and fives tomorrow will give me the third degree! I plan to draw bugs which correspond to the numbers on the velcro panels- 9 fruit flies, 8 ants, etc. down to one large bug like a praying mantis or something. If I'm going to be in this thing, might as well make it fun. Good thing our Resident Artist is home to help as well!
As far as prayer requests go, I don't even know other than A) a good plan that bodes well for ideally no/few issues in the long term and B) that can be done between school and vacation, again ideally, and C) that everything is healed before our Christmas in July party so that I can be living life! Just DON'T pray for patience for me as I figure out how to finagle all of this stuff with my left hand because I'm right hand dominant, of course!
Don't take your elbows for granted. It's all fun and games until you can't bend your arm...
