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Eight months later: I still have the godforsaken boob

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My daily blog post quickly evolved to a weekly post, which slowly turned into a monthly post. I need a routine here. Maybe I should aim for a weekly post again. I just have so many other things I’d rather focus on! I like to ignore my boob. I like to live my life without remembering that I have this crazy illness that keeps me tethered to the healthcare system. I’ve been concentrating on other writing projects. I am not making excuses here. I’m just articulating the resentment I feel at my compulsion to write about a topic I wish I didn’t have to write about.

So, what’s the status now? I’m getting bored. I resent having to extend my fickle attention span when I would rather pursue shiny new topics. I’ve had Idiopathic Granulomatous Mastitis for eight fucking months. I’m not only bored, I’m angry. I’m not constantly fuming, and I’m not bitter, so it’s not the kind of anger that consumes me. It’s the kind of anger that hits me every now and then. I acknowledge the feeling, and then I punch my anger back by finding something to be happy about. It’s not cancer. I’m alive. I’ve learned to cope. I am functioning pretty damn well.

My boob has sprouted new inflammation sites. I have a bright purple lump that is getting ready to explode at the top left quadrant. Two faint pink lines on either side of it herald the birth of new little lesions. I, a confirmed pacifist, have a budding mine field on my breast. I still have the hard lumps on the lower left quadrant. The nipple is still retracted and wonky-looking, and it feels like I have rough small pebbles instead of normal breast tissue. The pain is increasing on a daily basis, but it hasn’t been bad enough to warrant taking pain meds. I’ve grown accustomed to the pain. I won.

I still take prednisolone. I am still certain it helps. I still hate taking it and want to stop. I’m down to 2.5 mg per day. I was taking 5 mg per day, but my blood sugar went crazy on me. I experienced the classical symptoms of hyperglycemia (high blood sugar): insatiable thirst, constant peeing and fatigue. I measured my blood glucose levels two hours after eating meals with a slightly high carbohydrate content, and the results were abnormally high. What’s a high carb content for me? A fruit smoothie and a medium serving of fries. A bowl of rice and beans with a glass of orange juice. These should not have sent my glucose levels soaring, but they did. I increased my exercise and cut back even further on my carbs, but this only made me grouchy and hungry and exhausted.

I had to reduce my prednisolone dose, because I started developing corticosteroid-induced diabetes. I caught it early, and I called my doctor after I had five consecutive days of high glucose readings. He immediately ordered a long-term glucose test (HbA1c), which showed that there was no long-term effect yet. At 5.6%, I’m doing an excellent job of controlling my blood sugar levels through meticulous diet planning and light exercise. He reassured me that a few high measures are not going to ruin my balance and that steroid-induced hyperglycemia and diabetes are usually reversible upon discontinuation of treatment. This was enough to make me decide to discontinue treatment, so I started on a schedule to taper down prednisolone. You can’t just stop taking it suddenly. You have to taper down slowly. Sure enough, my IGM started flaring up again, so I’m going to keep taking one 2.5 mg pill a day for a few weeks before I continue to taper at my current rate of a quarter pill per week. I’m really pushing the “lowest therapeutic dose possible” concept here.

Great news bears reporting too. I’m no longer anemic! I’ve reached the magical threshold, the cutoff, the lower edge of normal. I still have to build up my iron stores, and my goal is to be in the middle of the normal range. I have now been 100% gluten-free for almost two consecutive months (and five months total), and my blood tests show that I am absorbing nutrients. Yay! I also have no mood issues. I am still off the anti-depressant, and I am still not at all depressed. My mental health has not been this good in over a decade. I feel solid, tough and resilient. I feel joy. I feel normal. I wonder if gluten was messing with my mood. I feel lucid, confident and full of purpose and agency. I’m not afraid that this is fleeting, and I don’t think that I will get depressed this winter. This is what recovery feels like. Oh! I almost forgot! I had a bone density scan a month ago. It showed that my bones are dense, tough and sturdy. I am so grateful for that. All that weight-bearing exercise has paid off.

Tomorrow I will see my Good Boob Doc at Rigshospital for a follow-up. I know how it will turn out. She’ll notice I got my long hair cut into a chin-length bob with heavy bangs. I’ll tell her I did it because my hair is falling out in clumps and I had to try to cover up the balding spots. I’ll ask her if that’s a side effect of prednisolone, or the result of my body fighting illness for so long, or the result of weight loss. I’m down to 50 kg, which is a fine weight, and I’m doing all I can not to go lower. I’ll tell her I’m coping well, and that everything about my health is getting better except for that stubborn left boob and my hair loss. I’ll ask her to schedule a mastectomy for the last week of January 2014, right after I graduate and before I launch my new career. She’ll tell me that she still wants to see if this illness will burn itself out. Let it run its course. Keep my body whole. I’ll tell her that I’ll wait four more months, but to please go ahead and book the operating room because I want to start my new life as an occupational therapist unencumbered by chronic IGM.

Then I’ll come home and spend the weekend contemplating alternative healing methods and therapies so that I can convince myself that my boob will heal itself. I want my Good Boob Doc to have the satisfaction of telling me, “I told you so.”


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.

5 responses »

  1. I too have GM. I’m currently, as I type this, waiting at my pre-op appt for the first step of my mastectomy. I’ve been dealing with this for a year and I am done!!! I’m supposed to have 3 surgeries over the next few months. Hoping this is the cute! Good luck!

    • Hi Lizzie

      Thanks for your comment. I’ve been off the blog for a month, but I’m back now. I hope your mastectomy went well and that you are having a smooth recovery. I would love to hear from you again. Best of luck to you!

  2. I have had Gm for 14 months now…I love your blog!
    Thanks a lot for sharing…please keep posting!

  3. Pingback: Time for Reflection | byebyeboobiesblog

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