I haven’t written in a week. I’ve been in too much pain to write. How ridiculous is that? Too much pain to write. This pain has lasted over two months now, and it is only getting worse. Just when I think I have reached the limits of unbearable, it intensifies. My breast is even more swollen, lumpier, more puckered, and an angry fuchsia color. I screamed in the shower this morning when I washed my underarm. The pain is there now too. There’s a hard, swollen lymph node in my underarm. It is painful and clearly visible. I cry a lot. Yup. Just like a child in pain. It took all my self-control to keep from crying in class last week. I don’t know how I made it through work. Thank goodness I only work one shift a week.
I feel like the doctors in charge of my case are not grasping the urgency. Tests and appointments are scheduled one or two weeks in the future. The internal medicine specialists and the breast surgeons keep passing the buck to each other. They are playing ping-pong with me. One of the breast surgeons looked me in the eye and told me that they can’t help me because what I have is not a breast disease, per se, but a systemic condition that falls under the domain of internal medicine. Um. Excuse me! This is in my breast. How is it not a breast disease? And aren’t you breast specialists? Shouldn’t you be treating me? He said that this is such an unusual disease and they haven’t seen it before, so they are not comfortable treating me. WTF!?!?!?!?!? He told me that only about 200 cases have been described in the medical literature worldwide since Granulomatous Mastitis was first described in 1972. I have better odds of winning the lottery.
The internal medicine specialist, an endocrinologist, wants to treat me with medicine. He’s willing to give it a go, experiment on me, play with the unknown. He suggests a minimum of twelve months on prednisolone, with some methotrexate thrown in for good measure. Yes, just kill my immune system, why don’t you! He told me not to worry about the side effects, because he will see me every two weeks to monitor for diabetes and Cushings. He’ll monitor my bone density and give me other medicines to counteract or prevent the horrible side effects of treatment. Mind you, he’s never tried this before, but he’s done his research. He’ll send me for a monthly breast ultrasound at the breast clinic, and he wants to photograph my boobs at every appointment to track progress. He also told me that he doubts my granulomatous mastitis is related to two other autoimmune conditions I have (Hashimoto’s thyroiditis and pernicious anemia). He said that he doesn’t think it’s autoimmune. “It’s idiopathic. There is no explanation.” So, if he doesn’t think it’s autoimmune, why does he want to treat me with drugs that suppress my immune system? I suspect that he wants to write a paper about me and get published in the medical literature. I am not signing up for 12+ months of torture in the name of science. I want a quick and permanent solution.
I think he means well, that he has a misguided notion that it would be a pity for me to lose my boob. I am not willing to fight this hard to hang on to some breast tissue gone rogue. I want it out of my body, and I want it out now. If this were my leg or arm or some other part of my body that I actually need, I would fight to keep it. It’s a breast. It was pretty. It was functional. It’s done its duty: nursed my three kids. It’s sick now, and I want this disease out of my body. I don’t want to try to cure it and live with horrible side effects and the very high potential for relapse. I want a mastectomy. I’ll have my life back in six weeks. I am barely functioning. My husband has taken over for me. My kids are tired of mommy being sick. I am desperate, and only drastic measures will do. I can be well in six weeks after a mastectomy or I can be a sick patient for over a year. Bye-bye boobies it is.