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Nov 11, 2018 04:52PM
I had an alternate PT for 2 of my last sessions, and she was great. When she took the measurements at the beginning of the session, she said there was almost no difference in the total -- some had gone up a little, some down a little (the good news is that the upper arm had gone down a little). So she decided to put me on the pump for 45 minutes. At the end of that, every measure on my arm was down. On that basis, she started the process to order me a custom sleeve and glove. My insurance will apparently cover 6 of each for every calendar year. The glove is for flying, since I don't have lymphedema in my hand. I'm guessing that later she will have me order a gauntlet to go with the next sleeve? Right now I'm wearing just a light compression sleeve they gave me. The bandaging they gave me (Round 1) really irritated my skin, so we tried it again with a different inner liner and some different material. It still irritated my skin, though slightly less. Hope to meet with the company rep about the custom sleeve before too long...maybe the end of this coming week. My PT also set me up for a pump. She really likes one of the new pumps that came out that has more "capillaries" -- the problem is that it comes down below the hips, whereas the regular one (black box) stops at the waist. I told her I thought the new one would just be way too much for me, especially with my bad back and arthritis hips.
Putting on the light compression sleeve is not that hard until you get to the top and do it without a mirror. Punched myself in the face lightly yesterday, even though I read about not looking at it here. Did it again today only slightly harder. Yeesh. I really need to get a mirror. Or get something to stay inside of my Swiss cheese brain. This is when I miss my estrogen the most!
My adventure earlier in the week was showering with my DH who likes much hotter water that I do, and when he closed the door to the bathroom and turned on the overhead heating element, my L hand started swelling up and I lost definition in my knuckles. I was terrified I'd given myself lymphedema! PT suggested we leave the bathroom door open. We remodeled the bathroom about 10 years ago, replacing the tub with a tiled shower with two double shower heads, one at each end, and a fold-up bench in the center. At first, we had only one control. When I knew I was going to have radiation again, we had our guy come back and reconfigure the plumbing so that each of us has our own shower temperature and volume control. Lifesaver! Still, we may have to rethink our comfort lever for whose side is whose, since when I sit on the bench (and I'm the one who uses it), my left arm is closer to his hotter water, and if I decide to get friendly, I right in the stream of hot water with my LE arm.
My "Now that it's cold, I remember I have Raynaud's in my fingers" time has arrived. I used to use heat packs in my gloves. Guess that's out for my left hand. I just ordered a men's large glove (and an extra large) to see if I can get something over the extra bandaging. I can't afford to go without because of the Raynaud's. What a cruel trick this all is. Bah humbug. Still, any day that I'm not told I have breast cancer is a good day!
I say my oncologist on Thursday. All is well. I told him I was embarking on a mission to change his practice so he referred his patients right away when they showed signs of LE, or even when they thought something wasn't right. He had been only referring cases of moderate to severe LE in the breast or arm, and deferring to Radiology, since they had so much more experience. (I had previously sent him a short, but diplomatic email on the subject about early detection.) Much to my surprise, he said, "I'm there." I gave him the handouts given me by my PT (about 3 pages worth, designed for patients as well as any medical personnel not familial with LE - and even those who are.) I felt really, really good about that. I think I may have made a difference in some women's lives in the future.
10/24/2014, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- (FISH)
12/18/2014 Lumpectomy: Left; Lymph node removal: Sentinel
3/11/2015 Whole-breast: Breast
4/14/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
11/3/2017, IDC, Left, 1cm, Stage IA, 1/1 nodes, ER+/PR+, HER2- (FISH)
12/15/2017 Lymph node removal: Left
2/19/2018 External: Lymph nodes
5/18/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)