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Yay! I get to see the Boob Doc sooner rather than later!

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It’s time to smile about things going well! It only took three days for the letter from Rigshospital to arrive. Three days! That’s unbelievably fast. They informed me that my blood and tissue samples would be used for clinical research, unless I chose not to give consent. I consent. Why not?

So, why did I cry when I read the letter? They gave me an appointment for March 22. Not to be ungrateful or anything, but this can’t wait three weeks. I called them today and found out that they have ONE doctor who knows something about Granulomatous Mastitis, and she wants to take my case. My appointment date is about her schedule, and schedules can be rearranged. The receptionist was so kind and understanding, and she tracked down the doctor, who agreed to bump up my appointment to this Friday. I didn’t even have to use the line my sister Christianne gave me: “If your dog is in this much pain, you don’t wait three weeks to take it to the vet. Be humane.”

I cannot grasp how this is possible, but I keep getting worse. My boob has a mind of its own. It is a mutant with a sinister agenda. It morphs constantly. The mass gets bigger, harder, lumpier. The bruises on the skin change color, size and shape. Pink, blue, purple, yellow, brown, multi-color polka dots. There is zero sensation on the nipple skin. It feels like it had a Novocaine injection. The skin itches sporadically, not the kind of itch that can be scratched. It’s more of a pins and needles sensation, like when your foot falls asleep.

Then there’s the pain. Ah. How can I describe the pain? It is dull and remains in the background when the pain meds kick in and I am distracted. It can feel like I’m being stabbed, or like my breast is being roto-rootered with barbed wire by an overly eager plumber hyped on speed. It can be so intense it leaves me breathless, speechless, crying and unable to move, feeling like a burning stony hand is crushing my boob. Sometimes it feels like my boob is going to explode, and sometimes it feels like taking a machete to my breast would be less painful. Sometimes it feels the way I imagine a heart attack would. (For the record, there’s nothing wrong with my heart, thank goodness!) It can be localized to a spot the size of a tennis ball, or it can radiate to the armpit and the ribcage. Sometimes my right boob feels sympathy pain. Then, I have to check it to make sure it hasn’t developed any crazy bumps. This has gone on long enough, and I’d like the pain gone, thank you very much.

The thing about pain is, you learn to live with it. You adapt. Life goes on. I just have to modify the way I participate in it and accept that I cannot do all the things I want to do at the moment. The only thing I can do is accept that this is my situation. I still show up at work. I still play and read with my kids and supervise homework.  We have long talks about all sorts of weird and mundane topics. I want to do things with friends and visit my family. I have to sit out and rest much more than I would like to because movement makes this feel worse and I am chronically exhausted. I am still grateful that this is not breast cancer. Yes, the pain is excruciating, but it could be worse. (And it does get worse, every day!) Seriously, though, there are people who are worse off, whose problems make my problem look like a luxury problem. On Friday, I’ll be that much closer to getting rid of this. Let’s hope the Boob Doc and I connect, and that she can treat this in the best possible way for me.


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.

2 responses »

  1. Terrible situation, great attitude!
    I hope you and boob doc connect as well. Thank God it doesn’t have to be a perfect match so long as she can help you. Even w common diseases everyone has their own experience, so don’t hold too much weight in how it went for her other patients. Friday? Better than the 22nd for sure, but I wish we could get you there right this minute. You stay patient, I’ll be frustrated for you! ……I’m cranky this morning from having terrible back pain the last few days,….. Thank you for putting it in perspective for me. Smile & Breathe deep ❤

    • Thank you, Celeste! I like to think the best of doctors. After all, they decided to be doctors so they can heal people. If I weren’t so squeamish, I would have chosen med school. I hope your recovery is going well and that you’re getting post-op physical therapy.


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