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Time for Reflection

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So much has happened over the past six weeks. My life has been fully packed, in a wonderful way. I have been so busy living, loving, doing, achieving, feeling, learning, interacting and observing. I completed my last ten-week occupational therapy clinical training rotation, and it was brilliant. I had thought that being a case-worker and processing applications for assistive devices would bore me to tears, but I was so wrong. It was fantastic! I was fortunate to have the best clinical instructor of my entire career — a seasoned occupational therapist with spark, insight and an uncanny ability to draw out the best in people. She inspired me and made me feel capable. I worked with two other students who made me feel safe enough in their presence that I could be my bubbly, giggly, crazy self and shine like a disco ball. It was wonderful to be among practicing OTs who made me feel like a colleague, like one of their crowd. I fit in! I was productive, learned more in those ten weeks than I have in four years of study. I enjoyed making a difference in the lives I was fortunate enough to touch. Walkers and wheelchairs and bath seats, oh my!

Although I did have to keep going to doctors’ appointments, I managed to complete clinicals with a surplus of hours. That’s how much I loved what I was doing. Maintaining my focus on meaningful activity and personal growth helped keep me from obsessing about the mysterious goings-on in my GM-affected left boob. I had a few days of pain, but it was nothing I couldn’t ignore by focusing on the task at hand. I did my usual run-around to the Boob Doc, the rheumatologist, the GP and (gasp!) the psychiatrist. The rheumie and the psych broke it off with me. Rheumie said that since I stopped taking prednisone, I’m no longer in their “jurisdiction” and handed me over to the breast surgeons without much fanfare. The psych declared me of sound mind and pronounced me fit to cope with a mastectomy, should I end up getting one. I also walked out of there with my very own Ritalin prescription, so I can stop swiping my kids’ pills. Typical! I get sent for a psych eval because I insist on a mastectomy to get rid of the Idiopathic Granulomatous Mastitis, and I walk out with an ADHD diagnosis. How much more distracted can you get?

My appointment with the good Boob Doc went pretty much exactly as I had envisioned. She even mentioned the hair. For a brief moment, I wondered if she had read my blog, but then I came to my senses. I wasn’t supposed to see her again until mid-November, but my rogue left boob had other plans. As predicted, once I tapered off prednisolone, the GM sprang into action. I developed a new hard lump about 2 cm in diameter directly below the nipple. It feels like a solid, almost unmovable stone. The skin around it is turning mauve, and it is pulling my nipple in. I did not worry when one of my little lumps at the top of my boob exploded a few weeks ago. It basically yawned and a gooey brownish-pinkish goop slowly flowed out. It was odorless, but totally gross. I stayed calm and observed the flow of liquefied breast tissue and imagined I was a zombie in Calvin and Hobbes. That’s how zen I’ve become about my GM. But I reacted when I felt and saw the new lump.

I called my Boob Doc’s direct number on Tuesday the 8th of October, and she gave me an appointment for Thursday the 10th of October. Why did I take this lump so seriously when I’m doing my best to be blasé? My beautiful, brilliant, funny, amazing cousin Lucia died on September 25, after a six-year-long battle with breast cancer. She was only 46. She had offered encouragement and counsel when I first got sick. I could almost hear her voice in my mind telling me to get checked, because it’s better to check it out and find out it’s benign, than to ignore a lump that turns out to be cancerous.

I had put breast cancer out of my mind for a while, and I didn’t want to go there again, but I did. I didn’t want to be that patient that bugs the doctor with her fear of breast cancer. I told my Boob Doc about losing my cousin to breast cancer, and empathetic and perceptive woman that she is, she asked me, “If I can reassure you that this new lump is not cancer, will you be willing to keep your breast a little longer and give the GM a chance to burn itself out?” Considering I had brought my sister along to help me argue for a mastectomy ASAP, I reluctantly conceded that my Boob Doc outsmarted me again in her quest to keep my boob attached to my body. “Fine. If I know there’s no cancer, not even anything close to cancer, AND it doesn’t become as bad as it was in the beginning, I’ll give it a chance,” I replied. She scheduled a mammogram and an ultrasound for Wednesday, October 16, and a follow-up visit to give me my results on Monday, October 21. She also referred me for genetic counselling and is having me BRCA-tested because I have two first-cousins who developed breast cancer in their late thirties/early forties. For the record, I don’t think my family has any of the BRCA mutations, and I’m sure that I won’t have it. I’m also inclined to believe my doctor’s reassuring stance that my lump is most likely harmless. I’m checking anyway, because I can and because it would be irresponsible not to.

I have now had GM for over nine months. I could have had a baby in this time. Actually, I know how big a hassle kids can be, and that they stay with you for at least eighteen years, rob you of your sleep, youth and beauty, eat your chocolate, mess up your house, and drain your bank account. I know how much it hurts to go through labor for days on end and how distressing it is to be on the principal’s speed-dial. Even so, I, the woman who said “No more kids!” after the third bundle of joy, would rather have had another baby grow inside me over the past nine months than GM. At least I would have had something to show (and love) for nine months of pain and discomfort.

My time and energy have not gone exclusively to academic and professional pursuits. I have spent a lot of quality time with my kids over the past six weeks. We’ve had dance parties in our living room. We’ve hula-hooped. We’ve done yoga together. The family that planks together gets killer core muscles together. We’ve read and talked and written. We’ve buried our geriatric hamster, who died cradled in my hands. We acquired a pet rabbit. We’ve gone for hikes in our nearby forest and taken a short trip to Sweden. We’ve snuggled and bonded over music. We’ve cooked together and discussed nutrition at the dinner table. Family life has been fantastic, because I made the choice to stop living in fear of pain. My husband is my rock. He lets me sleep in on weekends. A well-rested mommy is a happy wife.

Finally, I’ve spent the past six weeks reaching out and establishing connections. I volunteered at our local retirement home and visited ladies with dementia on Sundays. We had the best conversations, and I learned something about being in the present moment. I’ve been reconnecting with old friends and making new friends. I feel good. I feel loved and appreciated. I see so much beauty around me, so many wonderful people with incredible stories and fabulous flaws. I am at peace. My boob may be acting up again, but I am strong and at peace.

William Blake, one of my favorite poets, captured my feeling exactly:

To see the world in a grain of sand
And a heaven in a wild flower,
Hold infinity in the palm of your hand,
And eternity in an hour.

-from Auguries of Innocence



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. Hello, I just read your last post and was wondering how you are doing, i.e. are you still on steroids or did you have a mastectomy? I’ve been dealing with IGM for 8, going on 9 months now and I am seriously considering a mastectomy because every time I taper off anything my lesions and abscesses return. I’m 29, hoping to have more kids and don’t want this disease hanging over my head for the rest of my life. If you don’t want to blog about it would you mind sending me an email? mandibartel(at)gmail(dot)com

    I sincerely hope you are feeling better. Thank you for sharing your journey.

    Mandi Bartel

    • Hi Mandi. Thanks for your comment. I’m so sorry to hear you have IGM. I am fine now, thanks to a mastectomy. I have my life back. I will post about it later today. I hope that you are feeling better. I’ve been offline and processing my experiences the old-fashioned way: pen and paper.

      • Hi! Your last post was so timely, it was incredible. 5 days after you posted about your recovery from the mastectomy I got my surgery date. It came up really quick and up until going under I was a mess of emotions, but I woke up and felt like a different person. It was like my body was singing with relief that the diseased tissue was gone. My surgeon (who was a bit reluctant and wanted me to wait to see if the disease would be self-limiting) told me the breast tissue was a mess, completely watery and inflamed. It was such a relief to hear him say that because all this time I knew in my core that a mastectomy was the right decision, but all my doctors were a bit worried it was too radical. I’m sore, but that is nothing compared to the daily pain and fatigue I experienced before. I’m so glad that you are recovering well. I’ll be honest I’m having a hard time resting because I feel so good! Thank you so much for writing through your pain and into your recovery. It have me hope 🙂

      • Hi Mandi! I’m glad that you are happy with your treatment and recovery. I’m also happy to hear that my writing gave you hope. It is wonderful to be rid of the diseased tissue, isn’t it? My surgeon gave me the same report after my mastectomy: total mess! I don’t even notice my ex-boob any more. Here’s to a speedy recovery from your mastectomy!

  2. I also tested negative for the BRCA mutation (as I had predicted).


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