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PAIN, Frustration and Desperation

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I haven’t written in a week. I’ve been in too much pain to write. How ridiculous is that? Too much pain to write. This pain has lasted over two months now, and it is only getting worse. Just when I think I have reached the limits of unbearable, it intensifies. My breast is even more swollen, lumpier, more puckered, and an angry fuchsia color. I screamed in the shower this morning when I washed my underarm. The pain is there now too. There’s a hard, swollen lymph node in my underarm. It is painful and clearly visible. I cry a lot. Yup. Just like a child in pain. It took all my self-control to keep from crying in class last week. I don’t know how I made it through work. Thank goodness I only work one shift a week.

I feel like the doctors in charge of my case are not grasping the urgency. Tests and appointments are scheduled one or two weeks in the future. The internal medicine specialists and the breast surgeons keep passing the buck to each other. They are playing ping-pong with me. One of the breast surgeons looked me in the eye and told me that they can’t help me because what I have is not a breast disease, per se, but a systemic condition that falls under the domain of internal medicine. Um. Excuse me! This is in my breast. How is it not a breast disease? And aren’t you breast specialists? Shouldn’t you be treating me? He said that this is such an unusual disease and they haven’t seen it before, so they are not comfortable treating me. WTF!?!?!?!?!? He told me that only about 200 cases have been described in the medical literature worldwide since Granulomatous Mastitis was first described in 1972. I have better odds of winning the lottery.

The internal medicine specialist, an endocrinologist, wants to treat me with medicine. He’s willing to give it a go, experiment on me, play with the unknown. He suggests a minimum of twelve months on prednisolone, with some methotrexate thrown in for good measure. Yes, just kill my immune system, why don’t you! He told me not to worry about the side effects, because he will see me every two weeks to monitor for diabetes and Cushings. He’ll monitor my bone density and give me other medicines to counteract or prevent the horrible side effects of treatment. Mind you, he’s never tried this before, but he’s done his research. He’ll send me for a monthly breast ultrasound at the breast clinic, and he wants to photograph my boobs at every appointment to track progress. He also told me that he doubts my granulomatous mastitis is related to two other autoimmune conditions I have (Hashimoto’s thyroiditis and pernicious anemia). He said that he doesn’t think it’s autoimmune. “It’s idiopathic. There is no explanation.” So, if he doesn’t think it’s autoimmune, why does he want to treat me with drugs that suppress my immune system? I suspect that he wants to write a paper about me and get published in the medical literature. I am not signing up for 12+ months of torture in the name of science. I want a quick and permanent solution.

I think he means well, that he has a misguided notion that it would be a pity for me to lose my boob. I am not willing to fight this hard to hang on to some breast tissue gone rogue. I want it out of my body, and I want it out now. If this were my leg or arm or some other part of my body that I actually need, I would fight to keep it. It’s a breast. It was pretty. It was functional. It’s done its duty: nursed my three kids. It’s sick now, and I want this disease out of my body. I don’t want to try to cure it and live with horrible side effects and the very high potential for relapse. I want a mastectomy. I’ll have my life back in six weeks. I am barely functioning. My husband has taken over for me. My kids are tired of mommy being sick. I am desperate, and only drastic measures will do. I can be well in six weeks after a mastectomy or I can be a sick patient for over a year. Bye-bye boobies it is.

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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.

14 responses »

  1. Phillip Bannowsky

    Jesus, AK,
    I would not presume to advise you medically, and not experiencing what you have been going through, I can hardly judge your judgment. Still, it breaks my heart to see you faced with such a decision. You are still very young in my memory and full of resilience and a capacity to heal. I suspect you have tried some alternative medicines. I am a fairly western-medicine-oriented materialist, but I know someone who was treated for uterine fibroids successfully with acupuncture and Chinese herbs. Her acupuncturist had been trained at Harvard in alopathic medicine and he did not like violent treatments, so he went to Korea for training in traditional medicine. Maybe there is someone in your neighborhood with such qualifications. Good luck and bless you AK.

    Reply
    • Aw! Don’t go breaking your heart, Phillip! I’m at peace with my decision, and I will take your advice and make an appointment with my Chinese doctor/acupuncturist. I had three good months last summer, three months of energy after eighteen months without (That’s another story, a future blog entry), and I am sure it was thanks to the herbs and acupuncture. This was the push I needed to schedule that appointment. I am still very young in my memory too, and you’re still that amazing and inspiring English teacher in my mind. Big hug!

      Reply
      • AK, I am so relieved to see that you are doing that! (I have seen so many go the traditional route unsuccessfully or with severe side effects including my own father) Also, watch thespiritscience.net They have some really interesting videos you may like, but particularly the part about crystals and energy. Also the Gerson Therapy, which I’m sure you’ve heard of? ❤ ❤ I ❤ your crunchiness.

    • I couldn’t figure out how to reply to AKs post, so I’ll put it here. AK, I agree 100%. Realy, it is a physical part that will probably be non-functional again…. Appreciate the past function, beauty, and bonds the boobies have created in the past(don’t laugh, in a maternal way silly) and let go……. I would do the same. Really, if it’s that paining to have no boob(s)…. what’s a boob job or a good bra compared to being sick for so long?!?!?

      Reply
      • Maja, I did laugh, in a not-so-maternal way, silly! You are absolutely right. Thanks for the suggestions. I will definitely check out the videos and links.

  2. Well AK, you have brought me to my knees with your sharing. Keep writing, keep expressing and may your pain be shared by all of us who love YOU! Your burden is our moment to say we love you and yes by all means you have a right to yell,scream,cry,shout out……We are here sending healing rays of love, and comfort as you navigate your way through this part of your life’s journey! Love, Gretchen L.

    Reply
    • Thank you, Gretchen! I will keep writing. It is therapeutic. I thought of you today, when I read that Dr. C. Everett Koop, former surgeon general died. You know, he had the same birthday as I do. You had us keep journals in health class (seventh or eighth grade). Writing in that journal was such an outlet for me! You showed us a video of Dr. Koop talking about HIV and prevention and had us write responses to the film. I wrote about the doctor’s funny facial expressions and voice because I was uncomfortable writing about such a serious topic. Your comment in ink on my paper: “I hope you can get past the funny face and remember the message.” I remember all the messages. Thank you.

      Reply
  3. I remember learning about GM in medical school but have not seen it in practice. I’ve been thinking if you and doing some research… I’m concerned about the mastectomy being performed while you have so much inflammation. I’m pasting a link here to an article about the proper way to test for infection which may be causing abscess and pain. http://www.medscape.com/viewarticle/748801
    If you would like advise on lowering your overall bodily inflammation let me know. There is much you can do via diet alone. I am so sorry for your suffering. Please let me know if I can help.

    Reply
    • Thank you for the article, Celeste. Pathology used acid-fast testing and found no gram positive microorganisms. Three courses of different antibiotics have had no effect, and there is no sign of infection in my blood. Infection has been ruled out. That being said, I am printing out the article and asking the doctors to check again, because it sounds plausible, and it would be a lovoly and simple solution. I won’t have surgery while I have so much inflammation. My GP gave me a methylprednisone injection to try to bring the inflammation down. I have read your entire blog and paid attention to what you wrote about diet. I am trying to incorporate antiinflammatory foods. I am touched and awed that you have taken the time and energy to do this research for me while you are recovering from your own mastectomy. Be well and heal well.

      Reply
  4. Trenton Smith

    AK,

    It’s so sad–upsetting–to hear how sick you are. A few years ago my wife Lyndi had gallstones and was in incapacitating pain. I’ll never forget how she looked at me and pleaded in all sincerity that I kill her to end her misery. She was so desperate for relief. It was heartbreaking. Fortunate for us, the condition isn’t rare and once she had the surgury to remove her gallbladder the pain stopped (she has side effects from its loss but those are manageable).

    Hearing your story reminds me of that. I don’t know what the right solution is for you–I just want you better. My heart goes out to you, and to John and your kids (we had four when Lyndi was sick–five now–similar in ages to yours). I hope and pray you’ll get better soon.

    Trenton

    Reply
    • Trenton,

      Thank you so much for your note and your prayer. I’m glad everything turned out well for Lyndi. Having a loving, supportive husband makes all the difference!

      Reply
  5. AK, Please do not give up. The doctors sounds like complete morons. The internist who wants to treat you like an experiment likely has no idea that any form of surgery can cause more damage. The immune system is already attaching the breast tissue. A biopsy, extraction or cutting out of lump can leave huge scarring. PLEASE DO NOT GET VOLUNTARY MASTECTOMIES!!!!! They are not necessary. Please get more opinions from doctors and look online for more information.

    Reply
    • Thanks, Amanda! At this point, it boils down to choosing between the lesser of two evils. I have other health issues that contraindicate long-term pharmaceutical treatment. If there is a way to heal this that does not pose additional threats to my health, I will jump on it. I’m also pretty terrified of going through a mastectomy, but like I said, it’s the lesser of two evils. Now, if only I could find a third optimal way…

      Reply
  6. I don’t understand societies issue with women opting to have voluntary mastectomy. Breasts are not a like a pair of ears, legs, hands etc. Once they have fed babies, they can go as far as l’m concerned. Chop the bastards off if they are the root of the problem & get on with your life. Drugs are not the answer.

    Why is it that people can go and have a sex change and remove body parts when they have no physical pain. If a women has a medical condition, she should have the right to have it removed.

    Reply

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