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Breaking My Silence

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I am back from my month-long offline roller coaster ride. The last time I wrote was exactly one month ago. It was ten days post-biopsy, and I had been starting to feel pain again after a few weeks with no pain. The pain got worse every day and I had to start taking Gabapentin again. Guess what happened? I lost the ability to write again. I wanted to write that week, but I could not. I could barely stay awake. I couldn’t drive. Gabapentin may do wonders for pain, but it renders me completely useless.

Why did the pain return? I think it was the biopsy. I think that punching out four tissue samples caused a flare-up. I got the peace of mind of being completely sure I don’t have cancer, but I paid for that peace of mind. My boob started swelling again, it got redder, and the pain became unbearable. By April 5, I was desperate again. I had an appointment with my boob doc, and I told her that I could no longer handle the pain, and could she please, please, please just cut off the damn boob. She told me that it was too inflamed for surgery, and that she would confer with the other surgeons. She also told me that they may say that they will only do a mastectomy after I have exhausted all the pharmaceutical treatments, one of which could be methotrexate.

She asked why I am so reluctant to take medicines when I am obviously in such pain. I answered that I do not want to be caught in a vicious cycle of having medicines reduce symptoms temporarily only to have them flare up when I taper down the dose. I also told her that I do not want to deal with side effects for a long period of time. I want to get rid of the problem. She agreed that a mastectomy is the easy and obvious solution, but she is concerned that I may regret the choice later in my life. She warned me about the possibility of post-mastectomy phantom pains and nerve pain. She said reconstruction could be a long and painful process. I could be jumping out of the frying pan and into the fire.

I agreed to one more round of prednisolone to bring down the inflammation AGAIN. The boob doc consulted with a rheumatologist, and came up with the minimum effective dose and tapering schedule for this. I only agreed to this out of desperation. I couldn’t continue to take pain meds that leave me knocked out and unable to write. I was wary of the possibility of negative side effects, especially considering that this is my third round in four months. I left the hospital in tears. I was getting worse, I had to take prednisolone again, I may find myself forced to take methotrexate, and the breast surgeons’ primary reason for refusing a mastectomy was unbelievable. My boob was not considered sick. I was not considered sick. Apparently, only cancer counts as sick. I felt powerless and humiliated. How can this not be considered sick? I am sure that all the women out there with granulomatous mastitis will be just as outraged as I am.

The prednisolone worked. Of course it did. It’s a very powerful and effective drug. Within two days, the soft-tissue swelling went down, and the pain stopped. No more pain meds! Unfortunately, I paid a price for this relief. I have depressive tendencies, and you have to be very, very careful when you give a depressive corticosteroids. I fell into a deep depression within three days of taking the meds. I became weepy and extremely irritable, and then weepier for being irritable. I am not an irritable person. I was snapping at my little ones, and I couldn’t stand having my husband near me. If he read the paper over my shoulder or hovered while I checked my phone, I felt anger bubbling up inside me until I almost exploded. I never feel this way about my husband, and I don’t usually think he hovers. He is sweet, funny, strong, kind and supportive. I love his company. I enjoy reading the paper together. I felt so guilty because every little scuffle and every request that didn’t meet with immediate compliance made me irritable with my children. I even yelled at them once! I am not a yeller. I felt like the worst mother in the world, and I started thinking that my children would be better off without such a sick mother. My thoughts became distorted and pointed toward self-destruction. I had a very BAD reaction to prednisolone.

Saturday, April 13 was our fifteenth wedding anniversary. I spent the day curled up in the fetal position, drifting between crying and sleeping. My husband forgot our anniversary. Normally, I don’t fuss about this kind of thing, but I was devastated. And I was irritated that I was devastated over something so petty. The man is a wonderful husband. He has been so supportive. He has taken over the household tasks I could no longer do. He has cooked for me and washed my laundry. He has taken double duty with the kids. That is what I should focus on. I have done the same for him when he’s been out of commission. My rational mind knew that he forgot because he has had so much else going on, and I could have wished him a happy anniversary and had a lovely day, but my irrational mind won. I was furious with myself for letting what I knew was a prednisolone-induced depression ruin what could have been a lovely day.

I am breaking my silence today. I am writing about things that are very uncomfortable to write about. It is taboo to openly acknowledge depression. I fear that I may be shooting myself in the foot by doing so, but then I remember I am not alone. What I write is what others going through this think. I know that being brutally honest about this will help somebody else. I have not written for a month because I got depressed. I believe that the depression is a side effect of the medicines I have taken. I have barely even posted on facebook! I have gone days without looking at my account. Normally, I love to communicate, see what my friends are up to, post funny stuff and controversial stuff, comment on friends’ posts. I went silent, and in my case, silence means I am in a very dark place.

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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.

6 responses »

  1. Te mandamos un besote, Anakarina! Estoy segura que en poco tiempo podrás encontrar una solución. Abrazos con mucho cariño.

    Reply
  2. Good for you for being brave enough to talk and write about it. A world of friends is pulling for you.

    Reply
  3. tu eres la mujer mas valiente! las depres hay q contarlas para q dejen de ser eso depres.. te mando mil besos mujer hermosa!!!

    Reply
  4. Mil gracias! Things are starting to look a bit brighter.

    Reply
  5. I commented earlier today that I had just discovered your blog. You have no idea how much I needed to read a blog like yours. I’m sitting here nodding my head about nearly every experience you’ve endured, as mine have been so very similar. Right down to the horrendous psychological reaction to the prednisone. I endured that for 6 months then demanded to come off it. Within a week of beginning the taper (from 10mg to 8 mg), I could feel the lump reforming. It’s hard not to get depressed with this condition.

    Reply
    • You’re right, Sue. It’s hard not to get depressed, and I’ve finally figured out how to keep the depression at bay, and I will be writing about that over my next few entries. I’ve also had to stop prednisone, and my lumps are loving it and growing and flourishing once more. I think I’m going to start naming them. Bumpy, Lumpy, Stumpy and Ringo.

      Reply

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