As we were leaving this last doctor visit, we asked my hematologist/oncologist for a copy of what he sent over to the plastic surgeons office for insurance. Reading through his notes, my heart dropped.
"Prior to starting treatment however patient insists on having her breast implants removed; she is convinced that the toxins in the silicone solution is the cause of her MDS despite our conversations to the contrary, and she says she will not have peace of mind until they are removed; I advised her that pursuing the removal now as opposed to start treatment for her MDS immediately she risks progression to Acute Leukemia which could rapidly be fatal; she is aware of the risks and wishes to have that done first."
What in the hell. I am livid that these doctors would make me sound crazy, that I'm "convinced" the implants are the cause. Let me back up a little bit. Doctors for the most part do not know a true cause for MDS, aside from previous chemo/radiation and certain chemical exposures. Other than that, the causes are "unknown." So, if they are unknown, how can a doctor without a shadow of doubt say to me, the implants are not the cause? Even the plastic surgeon agreed they need to come out, along with the capsules, to help my immune system recover and work properly.
Later that evening, I get a call from my plastic surgeon directly. He sounded concerned and voiced his concern regarding the severity of my hematologists notes. He says he was unaware of how serious my situation is (I don't believe it's as serious as the doctor is explaining), and he's concerned about my platelets causing excess bleeding and such. I completely understand his concern as a surgeon, and after we discussed, he wanted to talk directly to the expert at the cancer hospital to get her input, since she herself said if I was going to do this, it needed to be done in the next 2 months.
I made a call out to her, and after speaking with her, she says my white cell count is ok so much that if I have an infection, my body will be fine to fight it. My platelets have come up enough that bleeding shouldn't be an issue. Cool! So call my plastic surgeon please to discuss. She says to have him call her on Monday and they'll talk about it.
Fast forward to Monday morning. My surgeon calls again with concern in his voice. He and the oncologist think it's best I do not do the surgery and to start chemo immediately. They're concerned about my healing time, and that it will delay me starting on chemo. Fuck.
He will not do my surgery. Dear Lord, please give me the positivity to move past this and seek a better route. After many tears and frustrations, my wonderful husband assured me that just because one door closes, doesn't mean there aren't many others to walk through. That's just not my path right now.
To be honest, I felt so crushed. Like I had no control over what health care I wanted to receive. I feel trapped. Being forced into an option that is NOT one that I will take, is not a good feeling.
So, I took control, got a referral for another hematologist/oncologist who will hopefully listen and be my partner in fighting this disease, not one to just shove their decision on me with no other options. I'm searching for another plastic surgeon who will perform my surgery when my blood levels are at the right point that it will be safe. I'm also searching for a naturopath or holistic doctor who has worked with cases of MDS so I'm not out on this journey alone. I'm not completely against western medicine, but when they start shutting doors on my wishes, and try to control my health, I'm not happy.
Moving onward with positivity. My new mantra I tell myself all day, "I am healed. I feel great. I feel better than I ever have."
And that is what I believe.