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Nov 17, 2017 11:55AM
I post this here for feed back and perhaps to share some info with other people.
I consider myself new to lymphedema and while I have not been officially diagnosed, I am pretty sure that the swelling, throbbing ache and weird tight feeling skin are LE. It affects my arm, hand, armpit, shoulder blade, side next to my boob, ribs under my boob and the boob itself. I had minor annoyances with it after surgery, but radiation made it way worse! Every morning when I wake up the swelling in my side and underarm make it feel like I'm carrying a folded towel tucked under there. It feels bulky and thick, awkward and miserable.
Yesterday I started to make a quilt and felt stiff after many hours in the sewing room. Before bed I decided to lay on the floor and let my back stretch out. I have done all the stretches and exercises suggested with my arms and have a full range of arm motion. It can be a little stiff at times, a bit of niggling stiffness in the armpit / shoulder joint, but overall I'm pretty pleased with my range of motion. I'm NOT pleased with being swelled up and puffy all the time. And hurting.
So I lump myself onto the floor like a beached whale, legs out flat, arms out at side like a T, and oooh, gee, that is painful. Weird. I can move my arm out like that standing up with no problem but laying down with my arm to the side produced some unhappy pulling sensations. Hmm. Then I bring my knees up, to flop them over to the side to stretch out my lower back (arms still out in T formation) I flop my knees away from my bad boob and HOLY MOTHER OF SWEET HEYZOOS I almost peed my pants! Good god did that hurt! From my shoulder to ribs and the breast itself, right to the nipple, there was a ripping, tearing pain like white hot lightning and tears came to my eyes. NEVER has that happened before in my life! But it occurred to me that I have not done this stretch since I finished radiation. I laid on the floor stunned, afraid to move. It felt like a bear had sunk its claws into me and ripped my chest apart. So, being the clever lady I am, I did it again and yup, hurt just as much the second time. And the third. And the fourth. You get my drift.
I went to bed shaken at how much this effing cancer has shattered my life. I try not to think about it because it makes me furious, demoralized and so sad. All night, when I move in bed, I feel stiff. I suspect this is tamoxifen caused because since starting tamoxifen I have noticed that my overall level of pain has gone up and is constant, most noticeable when I move in bed at night. When I opened my eyes this morning my first thought was, gee, I wonder how my chest and boob are going to feel today. I got up anticipating pain.
What actually happened was that for the first time in well, a long time, I WAS NOT swelled up in my ribs and armpit. My bad boob side felt like my other boob side! What?! I flapped my arm like a bird a few times to make sure I wasn't imagining it. Swelling gone, or at least greatly reduced. Wow. It felt weird to NOT be swelled! It's like that torso twist (which was so excruciating) broke loose something that was tight and bound. I had no idea how cramped up and tight everything was because in my day to day moving my body is not subject to that twisting motion. But it seems to have had some positive benefit and now I know that I really need to focus on that and keep things from scarring, binding and plugging up. I cannot say if this will keep things permanently better, but this morning I see a positive development in swelling reduction! All I had to do was hurt like hell. I suggest everyone immediately make a quilt then lay on the floor. Take some wine with you!
3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2-
4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel
7/5/2017 Whole-breast: Breast
Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)