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Passing the buck again

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Dr. Endo called me back this morning! I was overjoyed! 24 hours is not a bad response time. He is releasing me from his care and sending me on to the country’s premiere breast surgeons in Rigshospitalet. He did more research and made some phone calls until he found somebody in Denmark who has seen this before more than one time. I am not getting my referral to the provincial breast clinic after all. I’m getting a referral to the country’s top medical center, where they know what this is! Now, all I have to do is wait for them to send me a letter calling me in for an appointment. Scratch that. I’m not waiting. Dr. Endo told them they need to get in touch with me fast, not the usual 3-4 weeks. I’m calling them this week. The squeaky wheel gets the grease.

Thank you, Dr. Endo. I know that you genuinely care for my well-being. I appreciate your research on my behalf. Sending me to the breast clinic in Rigshospitalet is the right thing to do. You’re passing the buck to its end destination, to the people who really know how to slice it, dice it, spice it and stuff it. Sorry I made that snarky comment about you wanting to treat me with long-term meds so you could publish an article about treating this rare illness. Thank you for answering honestly when I asked you how these breast specialists at Rigs have treated other women with Granulomatous Mastitis…

…Even if I do NOT like the answer: “This is a chronic disease, and the doctors at Rigs have treated all the previous cases with medicine. This is not something you cure, it is something you manage.”

GAK!

Wait a minute! These are surgeons! They’re supposed to be scalpel-happy. My GP says that his review of the medical literature shows that a mastectomy has a 100% cure rate. I have read message boards from an online GM support group, blog entries from GM patients and medical journal articles. They all say that medical treatment has at best a 50-70% chance of working. These women write about how the GM flares up when they taper off the meds and comes back bigger and better when stop the meds. They write about how horrible the side effects of long-term prednisone and methotrexate treatment are. A number of these women have gotten fed up after years of misery and relapses and have opted for mastectomy. Then they write about relief, finally!

Granted, some women do get cured, but (not to sound overly pessimistic here) I’m one of those medically unlucky souls. I’m a bit of a lemon, made on a Monday (sorry Mom and Dad). I’ve been through too much chronic illness already. I don’t want to be a chronic patient. I want to go in, get the chop-chop, come out, recover, and move on with my life. I can physically cut out this particular disease and get it overwith. These medications can create new illnesses and exacerbate my current ailments. I don’t need more constant doctors’ appointments. It’s probably also cheaper for the health care system to treat this swiftly with surgery.

And I’m not just looking for a creative way to get a free boob job! I am perfectly happy with my little boobs, except for this stealth attack. Heck, I’m toying with the idea of skipping reconstruction altogether. It seems like a lot of extra pain and trouble. I’m going to have to think long and hard about that one before I commit to a decision. I just want to be healthy. I want to be someone who doesn’t have to go for follow-up check-ups and blood tests all the time.

I want to say, “Yes, I HAD granulomatous mastitis, but I’m fine now and it’s never coming back. It sucked. I had to chop off my boobs, but I’m cured.” I DON’T want to say, “I have granulomatous mastitis. It is a chronic illness, and it is controlled with medication. It flares up once in a while, but I’ve lived with it for years. I still have my original breasts, but I also developed osteoporosis, diabetes, cushing’s syndrome, heart disease, and I catch every infection under the sun.” They’re just breasts! They are optional, not essential to the body’s survival. I am not going to poison my body to keep breasts that are trying to self-destruct.

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About A.K.

I am: dreamer, mother, wife, daughter, sister, friend, writer, reader, musician, artist, teacher, translator. I am a citizen of the world. These nations are my home: Denmark, Ecuador, USA, Canada, France and Germany. I believe the purpose of life is to love, laugh and learn. I am over being upset for getting this very rare disease: Idiopathic Granulomatous Mastitis. Forgetting all the pain and havoc is tempting, but I will honor the lessons it brought and release my resentment. This blog is my way of coping and reaching out to others who may be going through similarly unfair and bewildering experiences.

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