RSS Feed

Five Months of Dealing with *&#% Granulomatous Mastitis

Posted on

I’ve had a rogue and wonky boob for five months now. Had I been allowed to stick with the third breast surgeon I saw in the provincial hospital, I would have no boobs at all today. I would be the conflicted owner of a reconstructed bosom. I would not have given my body a chance to beat this disease, which is what the good Boob Doc from the country’s premier medical center pushed for. I have not beat this disease yet, but I am doing so much better. I am a stubborn patient, but I can be persuaded to follow medical advice I would rather ignore. Agreeing to my Boob Doc’s terms was quite literally a bitter pill to swallow, but I’m glad I listened to her.

The lump in my boob is finally smaller by about 10-20%. It’s also softer, and the pain is virtually non-existent. I have taken almost no pain meds the last few weeks. I have a few new pea-sized lumps that are hard as marbles, but I refuse to freak out about them. It’s not cancer. It’s not cancer. It’s not cancer. There are now three active mini-volcanoes that erupt on an almost daily basis. Two of them are biopsy holes that won’t heal. The newest one is a purplish spot where the skin became so thin above an abscess that it split open. Dealing with this constant flow of aseptic pus from little holes on my left boob is not exactly pleasant, but it’s not disconcerting or scary anymore. I am still convinced that it’s better out than in. This has to be part of the healing process. I must be healing! On most days I wear three band-aids laid out in a triangular arrangement on my boob. I call it my Berbooda Triangle.

I wanted to avoid a long, drawn-out pharmaceutical treatment in favor of a quick and effective surgery because I didn’t want to deal with nasty side effects, and I was in a hurry to get on with my life. I caved. I agreed to a three-month round of doxycycline (to be completed on June 19) supplemented by a fourteen-day course of fucidin (fucidic acid, a true antibiotic developed in Denmark in the 1960s). I agreed to take a long-term prednisolone treatment. I had the nasty side effects. The antibiotics, especially the fucidin, gave me chronic nausea and made food taste strange, bitter, metallic. I don’t ever want to take fucidin again. I WILL refuse another round, especially since it felt like I paid $200 to feel awful. The prednisolone unleashed mental chaos, and I had to reduce the dose drastically. I am certain that the prednisolone, as much as I hate it, is what is making me better. I am not so certain about the antibiotics. I have a nagging feeling that I’ve taken those in vain. I basically took a leap of faith and jumped on the doctor’s “what if it’s caused by bacteria” argument. It would be worse not to treat an infection that I have than to treat an infection I don’t have, if it means I can achieve healing.

Why did I change my mind? Why did I agree to a course of treatment I didn’t want? I had to be well enough to function at my clinical training so that I can finally finish my Occupational Therapy degree. (Why, og why, did I decide on a mid-life career change?) Prednisolone reduced the inflammation enough to wipe out most of the pain. The pain was what knocked me out of commission. Nausea and fatigue are somewhat more manageable. I’ve managed to make it through clinicals without my supervisor noticing my chronic nausea and fatigue. I did inform her of my condition in advance, just in case. I got an excellent mid-way review, and I have been able to see that I make a difference in my patients’ lives. Of course, I come home completely wiped out, but I’m grateful that I am able to do something meaningful.

I am functioning again. My kids see that I am working through this, and they feel that their mom is not in such bad shape after all. We are slowly going back to normal. We’ve done yoga together again, played Just Dance on the Wii, gone for walks and bike rides, and read Roald Dahl books. I can be more physical with them. I missed that. They still see that I am fatigued and that I get barfalicious on a regular basis. I have chewed them out for farting around me, because the smell sends me running to retch. They’ve learned to back away or leave the room when they must pass gas. They’ve tried lactose-free milk for my sake. (I think dairy is behind their gassiness.) They have pointed out that they can feel my ribs and my hip bones when they hug me, but at least they can hug me again!

Before anyone who remembers me from my very skinny days freaks out, I do not actually look that skinny. I am still curvy in appearance. I just happen to lose weight around those particular bones. My Body Mass Index is 21, which is perfectly respectable, and I have no interest in being underweight. I am not-so-secretly thrilled to be back at my pre-pregnancy weight from almost twelve years ago, and I intend to maintain it in a healthy way. I’ve got to focus on the silver lining, and a three-point BMI reduction is definitely a perk.

I trust that I will continue to get better, stronger and more resilient as I continue on this strange and unwelcome journey. I’ll keep getting up again every time I stumble. I will vent and look for support. I will show myself compassion when I cry and despair. I accept that this is a long-term condition, yet I hold on to hope that it will be resolved soon. I still wake up every morning and check to see if my boob is back to normal. I forgive myself for being surprised or disappointed when it’s not. I don’t believe I have this “for a reason.” I believe it is random, meaningless and absurd, so I will laugh at it as much as I can. And if you can laugh with me, I give you my love and my gratitude.

Advertisements

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. Hi

    I was really interested to find your blog as I was diagnosed a month ago, after four weeks of tests, two core biopsies – and being told that I had cancer. I’m slowly beginning to come to terms with it but I’m finding it hard not to worry about my ever-changing boob. I’d love to swap emails if you’re at all interested.

    Reply
    • Hi Ceri

      I hope you got my email. I’m so sorry that you are going through this. There is a medhelp community that you may find useful. Google medhelp granulomatous mastitis, and you should find links to it. I sincerely hope that you find relief soon and that you have great doctors who know what they are doing. Keep me posted!

      Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: