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Apr 6, 2018 09:26PM
I know I’ve been holed up in my room sulking because I have been having a real rough time of it lately, on all levels really but I’ll start with the physical and get to my family later.
a month or so after my first surgery to get cancer out with double skin saving mastectomy plus nipple grafts of cleared organ structures to my c section scars and my pet rocks in my chest that my doc for reconstruction left underfilled enough to need fake sillicone implants to keep them from doing horrific tricks like flipping completely around while I sleep in a sports bra!! So that nasty fill plate feels like a granade scraping across my rib cage directly
but I have enough skin left in pocket to flip it back around myself without any further damage to scars that go straight across middle but not underneath and up around nipple called a j scar.
Also lost about 10% mass of saline volume on left side with lymph damage but no rupture or seam leaking my body just absorbed it!! The failure to heal response was in other breast mostly healthy but damn fill plate is exact size and pressure on scar problem CAUSING that one spot and nowhere else to react that way!! Still have bruise about quarter size from my power port too but cannot see surgery scar they put it in with at all, my port came out January 6!!
And yup my weight has been totally insane since I weighed in while pregnant with my son at 240 and 210 when they let us out finally he was just under 8 lbs with a 12 inch head- my first daughter beat his noggin with 13 1/2 inch head and we were only 185 together and she was 8.5 lbs and broken collar bone on her way out she was green due to traumatic birth they made me do other 2 c sections after that because one more time would have been fatal and almost was for 2 out of 3 so I didn’t drop all my weight until after the birth of my last one and only to not be able to breast feed which is most likely reason it was so advanced and aggressive ductile invasive braca 2 mutated breast cancer!
So long story short I refused mesh metal patch of ANY kind being used on me for repairs back before they admitted it was such a BAD idea it caused more death and damage than it was meant to treat! Too bad for ME it was before they discovered a new organ in the body in between intestines and abdominal walls don’t know the name of it so they screwed up that part that regulates weight gain but kept us both alive so I can’t blame them for doing the best they could with the pile of unbelievable I dropped in their laps at the time!
I give my east coast team of doctors all the credit they deserve for keeping us alive against their odds but keeping a thumb on the scales in the name of plausible deniability has finally gone out the window for good now that my medical records and history are documented for trial studies I am now a part of.
I’ve been compiling a LOT of my story in journal form for my kids one day but unfortunately we are still not communicating at ALL anymore about a week before any school break making planning a visit impossible since I cannot travel and they all CLEARLY do NOT want to see or spend any time with me yet. I know divorced parents living out of state that know more about their kids lives than the months of hell I have been put through!
It’s not that I want a divorce as much as I desire vindication and having my rights upheld without having to fight for my most basic needs to be met!
Exploiting my diagnosis and symptoms for personal gain or pure spite is a crime and once I report it what happens to him is no longer up to me! He has every chance in the WORLD to respond and this was how he’s chosen to spend that time and money as his legal wife and mother of his kids was going through stage 3c breast cancer?!!
He’s SUCH a disgrace of a man now he is about to learn the difference between lying to your dying wife and lying in family court is a crime you don’t always walk away from!
I have done all I can so it’s up to him to speak up or be hauled before someone who will explain the difference between a legal wife and a girlfriend or baby mama you owe more than his ass can come up with when it’s his freedom that becomes forfeit for mistaking the title of wife for domestic slave!!
In short all his strategic silence is something he can no longer afford and the longer it goes on the more of his background gets reviewed in a different light!! I still love him but that means I will hold him to his words in front of people who will see my rights honored and upheld because I have earned that even if he cannot face me without being forced to by law!
I will get out in time to inform family court of my situation and switch my after care teams so I can figure out how to reconnect with my kids and get social security disability until I get my back pay as promised in court. A woman cannot survive in broken promises alone and court agrees with that after seeing what he has done it’s my kids futures I worry about most now.
So I’m feeling mutilated needlessly rather than a more fair consideration to my severe ptsd symptoms making this worse than ever and angry this is taking WAY longer than it should to milk the insurance more than I am willing to keep quiet about too once I am done and safe from reprisals of any kind for being right and able to prove it if I am forced to.
I had a 95% clear rate with chemo before surgery and all nodes taken showed complete response so missing their recommended 98% clear or better to avoid radiation being the industry standard response as clinical study is being done NOW to refute that steaming pile of NOT ME without the stress of guessing if you got fried or not in a double blind trial. I’d rather them watch and follow along as usual because the risk is NOT currently worth the unproven lifetime risk reduction vs direct damage to my new reconstruction so NO radiation for me thanks and I’ll keep my healthy organs too until they HAVE to be removed I need more than an expensive and outdated harmful guess!
I’m going with teardrop silicone also simply because my body cannot swipe any of it like the saline and my nipple grafts can be padded with my own fat to reconstruct depth on my own nipples that I lost so they will be a little smaller but still all me and no tattoos but microlazer scar removal If needed after 6 month final checkup then it’s just monitoring yearly for trials with oncology.
Glad to hear from you I’ve missed all you guys but I’ve been too frustrated with my very fussy plastic surgeon and too sad to talk about it all as I am getting so sick of not being DONE with my implants HURTING this much every damn day if they never intended to fill them up UNLESS I do radiation then they must overfill for up to 20% mass loss not to mention necrosis or failure and removal.... so NO WAY!!! I’ll take the tamoxafin pills for 5 years or until something better is finally allowed to be sold for pre menaoausal women.
When treatment improvements that are healthier for patients is LESS profit making than the current slash and fry options with every spinoff service that would go bankrupt if they simply were no longer a conmen side effect like GOING BALD and regrowing hair while still taking the same drug that made it fall out LIKE I JUST DID!!
It’s a problem of motivation and image of the entire field actually so I intend to BE that giant kick in the butt that will change how cancer became big profit but little advancement for the investment made by all the cheap marketing ploys by MY count so convict theft as FRAUD and it STOPS!
Once we change the culture of patient blaming and shaming it will be all too easy to convict those who openly profit most from lack of progress in the field!! More tax audits will create more American jobs and put our jails to MUCH better use than making patients criminals for believing their doctors lies for fear of liability!
6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2-
7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel)
9/2/2017 AC + T (Taxol)
1/9/2018 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
1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement