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Jan 13, 2018 10:15AM
I am a little loopy from all the pain meds still but finally got everything under control yesterday I got in to palliative care office and increased the extended release morphine and still have breakthrough fast acting doses for spikes too now adjusted for post surgery doses for now.
I stopped in to my plastic surgeons office next and had her fix my giant ace bandage and duct tape chest wrap that slid down my back a bit and was yanking on my 4 drain tubes stitched in place!!
It was the one thing I couldn't manage myself or reach because I'm wrapped up so well nobody but my dr is getting in there this wensday for a first look and 2 drains out.! I was glad we went with 4 because it released pressure evenly and wasnt as bad as I thought it would be with pain once we got me settled in my wrap. I don't even know where my scars are exactly but I have a pretty good guess they went straight across middle and I've had some wicked nightmares from it!
My nipple bank on c scars look great! They are attaching well and I feel my body connecting to them under the outer stitches going around wrapped tissue in soaked bundles about 4"tall so they will be checked soon but not this first time I don't know for sure yet. I'm one of the first ones done in my state so LOTS of excitement rushing around me and extra visits to take a quick peek it was funny!
I was told I have had optimal output on my 4 drains and one is still empty from surgery but tube is working fine and other one has dumped twice on that side and looks great so it was expected the side without most cancer in it to drain less. When output is under 25cc for 3 days or more they are ready to come out!
I do most of my own self care with everything because having ptsd and major body trauma is kind of a unique situation for me so I am best left alone in a quiet room as long as I check in texting several times a day.
The only person I would actually let help me with drains being that nasty is my husband and I haven't heard from him since he hung up on me in the hospital Tuesday!! What a guy right? I don't even remember the conversation but after everything I just went through, THAT is the only thing that still makes me cry! I did not hear a single word from any of our kids either the entire time so I am just praying for some divine intervention until I can help them! They seem to learn best by example so I just hope my husband is finally held accountable for his undeniable neglect of the needs of his family! There is just no excuse to promote preying upon the weak and I hope they get to see that happen before I return!
I managed to pick up 5 lbs already so that's a good start, and I just try to sleep as much as I can around my pill schedule so I can heal as fast as possible.
I was diagnosed at 105 lbs and picked up 27 at my top point on chemo. I worked hard for it trying to gain mass for reconstruction surgery but the stress just strips it away as fast as I can get it to stick! It's frustrating to endure but very impressive from a clinical standpoint that I'm so squishy for being so small I am told. I just hope it does more good for others one day as it did damage to me. Strangest part is they can't understand how I healed that way and what that means to the genetics work we are doing.
I feel like a little worm on a big hook these days and I can't wait to be filled in on the details that's got everyone so excited!
I'll save the doctor shaming on the pain meds and the hospital standard policy vs cancer center policy that uses that hospital across the street to put a smiling FACE on the patient that suffers as a result of adminitistrative policy FAILURE that causes ME pain as a direct result of things beyond my control! They wanted to send me home same day after 8 hr surgery!! HA! Teamsters hear that and they will hit the roof!! I have better insurance than most doctors working there thanks to the company that destroyed our marriage faster than it drained its own pension fund!
24 hr minimum is medical timeframe for patient after 6 hrs under in surgery vs insurance trying to treat and street this like a cosmetic procedure!!! I hate indignant soulless greed and take great pleasure in hanging a few policy raiding pirates in the wind for the rest to take notice of before they decide how to bend their ethics for the almighty paycheck!
My therapist phd is teaming up with all my cancer advocate nurses and charity groups and old family friends with a reputation for immediate policy changes on local AND state levels to review how my case was handeled from start to finish NOW, so even though I wont be there they will never put another patient through what I had to endure!
I can rest up with a smile knowing my part of the battle is over and all those fighting for my rights have the best case possible because of how I chose to walk through it. I know I did my best and changed a lot of lives while I had the chance because nobody deserves to be abandoned for being sick!
I just can't wait to be well enough to show what happens when patients change the healthcare industry built to SERVE us. I am not ashamed to tell them all how that made me feel, so they can FIX it for the next patient that might not be able to
6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2-
7/13/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel)
9/1/2017 AC + T (Taxol)
1/8/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement
1/8/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement