Lo, I shall call you The Reductor

 

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...

And so it goes

 I still don't really want to talk about this and it might be because, as a bestie said recently, "I really just hate thinking about all of this stuff and putting in words makes it real."

I so get that.

However, or nevertheless, whether I talk about it or not isn't going to change the fact that I have lymphedema. That's just a scary word that means my lymph system isn't draining super efficiently and so I'm taking on fluid. It's only in my right arm down to midway between my elbow and wrist but that is aggravating because it is DESPITE:

-wearing the compression sleeve this summer, even on vacation.

-staying active

-doing my stretching and physical therapy exercises

-sleeping with it elevated

-still wearing my SECOND compression sleeve daily

Wah. I just want to wallow a bit, but then I remember that hey, my arm still works (mostly) and I can get the mobility back (I hope) and probably if I stop doing what I'm doing it'll get worse so staying busy and fighting through yoga is what I'll do until I'm told otherwise.

I knew but had forgotten that the main lymphedema risk window is up to two years out from surgery and since my lymph node removal surgery was last fall, I'm well within that range. I just had hoped- like I'd hoped the surgeon wouldn't HAVE to take them out in the first place- that lymphedema wouldn't happen to me, but here we are. 

It's not painful per se but it is frustrating that my right arm looks like a sausage and that I can't reach equally far with both arms and that it's exacerbating my right neck/shoulder tightness. I can still do an impressive amount of flexibility, but I can tell how much range of motion I've lost and it makes me furious. 

I don't know if the two months of no lifting/exercising while I recovered from the complete hysterectomy is what set me back or if it is simply that I'm in that two year window or if it's because of the radiation treatment for the second time. I suppose it could be the trifecta of all of that, and perhaps more I'm not thinking of. It stinks that it's my right arm, which is naturally my dominant arm. Of course it would be my "good" arm! Ugh. 

Whatever. I have two arms and two legs that work so I'm going to shut it and move on. If that means I have to go shopping because I can't fit a lot of my sleeves over my swollen arm and compression sleeve, then so be it. If it means I'll need friends and family to right my sleeves and seams when I get where I'm going, then that's what'll happen. If I get my arms stuck in a shirt over my head, well, I guess I'll cry and then laugh and then figure it out. 

Otherwise, and I hate to speak it into the universe but here goes, I'm on my 6th month of my 3 year meds and so far so good. I'm luckily avoiding school germs thus far, so here's hoping that continues! Drink lots of water, wash your hands, and stay warm, my friends!

Two of everything, including skin pictures (viewer discretion advised even though things look amazing)

Two weeks post-hysterectomy, here's how things look. Still chigger bites hanging in there, figures, but my glue-covered incisions are healing well. I saw my doc for the first follow up appointment and she said everything looked great and to keep doing what I've been doing, with one exception:

 I overdid it a little bit last Saturday with walking 3 miles on the treadmill and then twisting side to side to crack my back. Then I had some spotting, which is always alarming, at least to me. So I quit it and haven't done it again and things have been fine. Just keepin' it real, or honest, or something.

She showed me the photos of my lady parts that she took during surgery and can I just say that I think it's so cool to be able to see one's own insides? So neat!

Also getting plenty of wear out of the abdominal wrap they gave me. Definitely nice to have the support when I'm walking. And wonderful to take it off. My doc and I mused about how that's like a bra, but those ALWAYS feel good to take off, haha!

And it's been two months since my last radiation session. My skin looks fantastic and it only a bit more than than the rest of me. It looks much less burned and the lotion is still going on once a day for the most part. I've forgotten sometimes and other days I've slathered it on twice, so it all evens out. 

I'm staying out of the sun and still wearing my sleeve on my right arm. I have another PT check in two weeks. Here's hoping I'll be done with the sleeve for real unless I'm doing heavy household chores or gardening, and I need to remember to ask if they recommend using it for any flights in case I get inspired to go anywhere. 

Thanks again for all the prayers! The healing is going really well on all fronts. 

Enjoy the cooler weather this weekend!