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I am healed. All is well. I am whole.

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I am healed. All is well. I no longer have Idiopathic Granulomatous Mastitis. If it weren’t for the long scar on my left ribcage, I can almost forget I ever had IGM. It seems so long ago and far away now. Another life. Isn’t it ironic that it took cutting out a part of my body to restore me to wholeness?

I said, “Bye-bye boob,” on February 4, 2014. It’s been a little over half a year, and I have recovered completely. After fourteen months of suffering, many of them in absolute agony, a scalpel brought relief. My body could not heal from IGM, but it healed beautifully from a mastectomy.

I have no pain. The mastectomy took it away immediately. As a matter of fact, I have no feeling where my boob once was. I have full range of motion, thanks to post-op physical therapy.

I have my life and my sanity back. I lost my mind for a few months, right before the surgery. I was literally out of my mind with pain. I was exhausted, weakened, almost defeated. I was so sick that I wanted somebody to put me out of my misery. I was ready to cut the damn boob off myself.

I have to admit that I’m glad a professional took care of cutting my boob off, because if I had done it myself, my scar would probably look awful. Do you want to know what surprises me? I like my scar. Aesthetically speaking, it’s lovely, smooth and slowly fading. I look in the mirror, and I see a beautiful, strong healthy body with one tiny breast and one scar. I do not miss my rogue boob.

I do not feel the need to hide my body, because I am not ashamed of how I look. I have an adhesive prosthetic boob, but I only wear it on special occasions. Most of the time, I just pull on a t-shirt and go. I have nothing to hide, and I really don’t think anybody is going to a) look, b) notice, or c) care. I feel comfortable in my body. It feels healthy and whole.

I love my mastectomy. It gave me my life back. I am healed. All is well. I am whole.

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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

 

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.”

The Incidentaloma

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It was bound to happen. All those diagnostic imaging studies were bound to discover something strange. I am pretty sure that my doctors have found an incidentaloma. When I had a CT scan of my thorax, it showed a small lump in my liver. An incidentaloma is an unsuspected abnormality detected when looking for something else. It is usually innocuous, but it can result in more diagnostic procedures and treatments, which may entail a certain level of risk.

A CT scan of my chest and abdomen detected a small lump in my liver. This prompted a liver ultrasound with contrast, which detected multiple small lumps in my liver, but did not give a clear enough picture to determine the nature of the lumps. The pathologist thought that they might be granulomas and may be related to what I have in my breast. All my doctors across the different specialties agreed that I should have a liver biopsy. I wasn’t thrilled, but I decided to err on the side of caution.

The liver biopsy, July 10

A liver biopsy is a relatively simple outpatient procedure. I had blood work done the day before the biopsy, to make sure that my blood clots normally. (It does.) If you are slow to clot, you risk excessive bleeding which could necessitate a blood transfusion. I showed up at Rigshospital at 9:00. The doctor explained everything he was doing and pointed out the lumps and bumps. He agreed with me that it’s probably nothing. His guess is that I have liver hemangiomas, which may have been present since birth and probably won’t cause any problems. The two samples he took were bright red, which he said is a good sign.

The procedure was uncomfortable and a bit painful. It didn’t hurt on my abdomen. I was one of the 15-20% of patients who experience referred shoulder pain. The right side of my neck and my shoulder hurt. A LOT. Enough for me to ask for some painkillers. At 9:45, I was wheeled to recovery at the breast clinic, where the nurses took my blood pressure and checked for bleeding every thirty minutes for four hours. I drifted in and out of sleep and had to stay completely still for those four hours post-biopsy. I was released to my husband’s care at about 16:30.

The first day post-biopsy was pretty uncomfortable. My mom kept me company that first day, and I barely moved. The whole family was instructed not to make me laugh, as this brought on a pain in the neck so intense, I ended up in tears. Unfortunately, it seems that everyone and everything is funnier when you’re trying to avoid laughter. The kids wanted to see my incision, and they wanted to learn all about the liver. I couldn’t do much, but we snuggled up on the couch and surfed the web for kid-friendly liver info.

Now, I have an embarrassing confession. I freaked out just a little close to bedtime. My normally flat belly had swollen so that it looked like I was five months pregnant. At the top of the list on my post-op instructions, it said to contact the doctor immediately if I experienced abdominal swelling. Prudent patient that I am, I called the after hours clinic. They told me to go the ER right away. The doctor palpated my abdomen and took my blood pressure to rule out internal bleeding. She looked at me with a straight face and said, “Your large intestine is full of gas because of fasting followed by inactivity. You need to go home and fart. Can you stand to walk a bit? Yes? Then, walk around and fart. Just walk and fart. Doctor’s orders.”

Relieved that it was just gas, and embarrassed to have contacted the doctor when it was just gas (I should have known!), I asked my dear hubby to drop me off a kilometer away from home, so I could follow the doctor’s orders. Humiliation aside, it took almost a week for the neck pain from the liver biopsy to fade. I couldn’t watch Big Bang Theory reruns for four days for fear of laughter-inflicted pain.

Liver biopsy results
It’s exactly what I thought it was. Nothing. Harmless abnormality. Wonky manufacturing. I wish I hadn’t had the biopsy done, but I suppose it was the only way for my doctors to be sure of what I already knew. My liver’s fine! There is no sign of malignancy or inflammation, just some harmless “abnormal” lumps and bumps. Incidentalomas.

Granulomatous Mastitis Medical Articles

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I’ve compiled a selection of links to medical articles about Granulomatous Mastitis. This is such a rare disease that there is no universally established treatment protocol. Treatment is by trial and error. What works for one woman may not necessarily work for another. There is a high relapse rate with pharmaceutical therapy and conservative surgical management such as incision and drainage. Treatment options described are anti-inflammatory and immunosuppressive therapy with corticosteroids and/or methotrexate, antibiotics, surgical management, mastectomy and “watch and wait.” Some cases of GM “burn out” on their own after 6 to 24 months. According to the literature, the most definitive treatment with the lowest rate of relapse is a complete mastectomy.

Doctors are equally baffled regarding the causes of Granulomatous Mastitis. A number of specialists believe it is an autoimmune condition, hence treatment with immunosuppressive therapy. There is a correlation between other autoimmune disease and IGM. Some cases have been reportedly caused by bacterial infection, particularly corynebacteria. Some cases may have been caused by trauma to the breast or hormonal imbalances. A few cases may have been linked to psychiatric medication use, particularly antipsychotics and mood stabilizers.

Granulomatous Lobular Mastitis: Imaging, Diagnosis, and Treatment, 2008

Idiopathic Granulomatous Mastitis: A Report of Twenty Cases, 2012

Successful treatment with methotrexate: Methotrexate in the management of granulomatous mastitis, 2003

Abstract
Granulomatous mastitis is a rare benign inflammatory breast disease that often clinically simulates carcinoma. Surgical resection of the entire lesion has been the main method of treatment but recurrence, infection, sinus formation and delayed wound healing can occur relatively commonly. Corticosteroids are also effective in recurrent or resistant cases but are associated with side-effects and relapse of disease after steroid withdrawal. A low weekly oral dose of methotrexate was used in five resistant cases after surgery plus corticosteroid. All cases achieved remission, withdrawal of corticosteroid without relapse and no methotrexate side-effect.

Summary of three cases, all treated with prednisolone/methotrexate. All long-term treatment, experienced recurrence and/or negative side effects: Rheumatologists and breasts: immunosuppressive therapy for granulomatous mastitis, 2004

Feasibility of surgical management in patients with granulomatous mastitis, 2011
“All of the 18 patients underwent a wide excisional biopsy and had a definitive histopathologic diagnosis of GM. The median follow-up was 36 months (range 6-60 months). Only one patient had a recurrent disease, which was diagnosed at 12 months. GM is a rare breast disease that mimics cancer in terms of clinical findings. Preoperative radiologic diagnosis might be difficult. Complete surgical excision is the treatment of choice.”

The Surgical Management of Granulomatous Mastitis, 2010
Abstract: Granulomatous mastitis is an inflammatory breast condition of unknown etiology. Management remains controversial and treatment algorithms are lacking from the literature. Few resources exist that discuss breast
reconstruction following extirpation. This descriptive case series reviews the clinicopathologic features of granulomatous mastitis.
We describe the surgical management undertaken at our institution including General and Plastic Surgery procedures. Eleven clinical charts and histologic slides of biopsy specimens were reviewed in our health region
between 1992 and 2007. Demographic data, clinical presentation, and radiologic findings were tabulated. Treatment consisted of empirical antibiotics and surgical excision. Procedures performed included incision and drainage
(n  8), excisional biopsy (n  15), partial mastectomy (n  5), partial mastectomy with reduction mammaplasty (n  2), and mastectomy with TRAM flap reconstruction (n  1).
Treatment was successful in all but one case. Multiple surgeries for recurrent lesions were often required to achieve final remission. Following extirpation, we recommend delayed breast reconstruction to monitor for
recurrence.

Idiopathic granulomatous mastitis: Successful treatment by mastectomy and immediate breast reconstruction, 2011

Granulomatous Mastitis caused by bacterial infection and successfully treated with antibiotics: Cystic Neutrophilic Granulomatous Mastitis: An Underappreciated Pattern Strongly Associated With Gram-Positive Bacilli,2011

Case study of granulomatous mastitis associated with antipsychotic drug use: Idiopathic granulomatous mastitis associated with risperidone-induced hyperprolactinemia,2012

Abstract:
Idiopathic granulomatous mastitis (IGM) is a rare inflammatory breast disease. The etiology and treatment options of IGM remain controversial. Previous case reports have suggested that hyperprolactinemia may be associated with IGM. In the present report, we describe the first case of IGM associated with risperidone-induced hyperprolactinemia.

“Other causes of mammary granulomatous formation must be excluded prior to diagnosis, and microbiological investigation is necessary. Because of an absence of a consensus for an appropriate treatment modality for patients diagnosed with IGM, surgery, steroids, immunosuppressants, and antibiotics have been attempted with varying degrees of success. Recurrence is common in the absence of surgical treatment, and a long-term follow-up is generally essential.”

Still Skipping Along a Medical Labyrinth

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Since my last post, I have had one to four medical appointments per week. That’s a little much, no? I consider myself extremely fortunate to live in a country where I don’t have to worry about paying for medical care, but I would still prefer not to need medical care. I can’t help but feel a bit guilty over how much I must be costing the healthcare system, and I really and truly want to make it a little less expensive for them. Here’s a clue: if you just perform the #@*&^ mastectomy now, you won’t have to keep me as a patient across different specialties for so long!

Rheumatology

I had my follow-up appointment at the rheumatology department on Monday, June 24. My first appointment was at the end of May, and the young rheumatologist took the most thorough medical history I’ve ever had in Denmark and ordered what seemed to me like every blood test ever invented. SIXTEEN TEST TUBES!!!!! Whatever is wrong with me, this clever rheumie will figure it out. My follow-up was with the senior rheumatologist. All those blood tests showed that I’m basically healthy and don’t have any other scary diseases. (I knew it!) It’s just the usual: hypothyroidism, anemia and vitamin D deficiency. Oh, and I’d be smart to lay off gluten. This doctor told me he’s reading Wheat Belly by Dr. William Davis, which instantly amped his street cred with me.

I’d given up gluten for three months before my first rheumie appointment, so as to test an anti-inflammatory diet. The first rheumie told me to reintroduce gluten for a month and report the results. The second rheumatologist got to hear what happened. Basically, while off gluten, I felt generally better. When I started eating gluten again, I felt generally worse. It was easy to give up gluten when I was in constant pain and going gluten-free made me feel proactive. It is not as easy to give up gluten when a doctor suggests it, because denial kicks in. What do you mean, I could have a real gluten sensitivity? What do you mean, I have to give up croissants? So, I’ve slipped a lot these past few weeks, but I figured out how to outsmart my lack of intrinsic motivation. “If you don’t eat gluten, you’ll feel better,” is not a good enough argument. It’s time to bring out the heavy guns: a sticker chart! When I get 30 consecutive “gluten-free day” stickers on my calendar, I get to buy myself a new pair of Converse All Stars.

The senior rheumatologist had an interesting thought process. He mentioned that out of the other three women who have been treated for Idiopathic Granulomatous Mastitis at Rigshospital over the years, two of them had been taking antidepressants, albeit not the one I’ve been taking. He wondered if my use of Wellbutrin had contributed to the formation of granulomas. He googled “Wellbutrin and granulomas” in front of me and showed me some articles that linked Wellbutrin to liver granulomas. I have some mysterious lesions in my liver that might be granulomas, so this is relevant. He suggested that I stop taking Wellbutrin for three months and report on my progress at the end of September. “It’s summer. Well, what passes for summer in Denmark. It’s sometimes sunny and a bit warm. You are not depressed at the moment. Try stopping Wellbutrin. If that is the cause of the granulomas, they should disappear within a month or two.”

WHOA! I like his train of thought. Stop a medication. I can do that! If Wellbutrin is behind my breast and liver bumps and lumps, and I can be healed by going off it, that would be so simple and so quick! I will also be incredibly pissed off that I took a pharmaceutical that created such horrible side effects, especially because it was a miracle drug for depression. I had no unpleasant side effects, and it worked almost immediately. There’s a reason why they call it the “happy, horny skinny pill.” The same doctor who has accepted my refusal to take methotrexate is suggesting I stop taking my antidepressant. He is not a pill pusher! Actually, he said that if my dose of prednisolone were 10 mg a day, he would insist on switching me to methotrexate, as a steroid-sparing agent. Since my dose is 5 mg, the possible side effects of methotrexate would probably be worse than the possible side effects of prednisolone.

I quit Wellbutrin cold-turkey. I did not experience major withdrawal symptoms, and my mood has been fine so far. I had a headache and was very sleepy the first day off the meds. I couldn’t concentrate on anything the second day off the meds, which was bad, because I had to write my final exam that week. I took Ritalin Uno on days 3, 4 and 5. Focus, energy and productivity returned, and I wrote my exam. I only take Ritalin on an “as needed” basis, so by day 6, I was completely off of psychotropic medication. Guess what? I’m fine. I went to the shrink, and scored a 2 on the Hamilton depression scale. Anything from 0-7 means you’re not depressed. Yay! I’m cured! I’m healed! (Actually, I think the proper term is “remission.”) One major illness down, just a few to go!

I had to increase the dose of prednisolone back to 5 mg daily, because my boob started acting up again on the lower dose. The senior rheumatologist reassured me that 5 mg is such a low dose, that it should not cause lasting side effects. He said it’s equivalent to what my body produces in a day. It should be too low to mess with my bone density and with my metabolism. I reiterated that I refuse to stay on this drug past January 2014. I’d rather cut my boob off that stay on long-term corticosteroids, because there WILL be side effects. He asked me if it wouldn’t be too traumatic for me to go through a mastectomy. I pulled my t-shirt closer to my chest and said, “Look at me. If you cut my left boob off, the size difference between the boob-less side and the other side will be minimal. I don’t think you’ll be able to tell. I don’t need a sick boob. It has no function.” He agreed I had a point, but told me to give the Wellbutrin detox a chance.

Psychiatry

I had an appointment with the psychiatrist two days after my rheumatology appointment. It is a bit strange to see a psychiatrist when I am of sound mind. Apparently, being of unsound booby has the potential to send me over the edge, so this is preventative medicine. I got my official diagnoses. On paper. I even had them explained to me. A psychiatric nurse showed me the grounds for diagnosis on the ICD-10 manual and asked me if it seemed accurate. I’m going to be really brave (or really stupid) and write about them. I have periodic unipolar recurrent depression, obsessive compulsive disorder and ADHD. My brilliant sister, nurse Connie, summed up my psychiatric woes: “You have OCD, and I can see that because you make lists over what you want to accomplish. Your ADHD impedes you from accomplishing things, and when you can’t accomplish, you get your periodic depressions.” So, I have your average mild, run-of-the-mill mental issues. I’ve had them all my life, and I have functioned pretty well in spite of them. Every now and then, they act up and interfere, but I can subdue them with cognitive behavioral strategies and psychopharmaceuticals. Maybe giving up gluten will help too.

A week later, I returned to psychiatry for a full somatic workup which showed that, aside from the few things that are wrong with me, I am the picture of health. The doctor strongly recommended that I get a liver biopsy to figure out exactly what those liver masses are. Even though I’m sure they are nothing, and I don’t want to go through an unnecessary procedure, I dutifully agreed. He sent me for more blood work. Apparently, they have this blood panel called a “depression screening” where they test for measurable evidence of other physical conditions that could trigger depression. I feel very well taken care of. I wish everybody had access to universal healthcare of this calibre.

Pathology

So, I’ve had blood work once a week for the past three weeks. The rheumie sent me, the shrink sent me, and the breast surgery department sent me. I think they just want to keep me anemic. I’m more docile that way. I also had an ultrasound-guided liver biopsy and a quick visit to the ER as a result. More on that on my next post.

Why I Am Considering Mastectomy Now That I’m Feeling Better

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Why do I still want to chop my boob off even though I am feeling better, the inflammation is significantly reduced and the pain is minimal? Am I nuts? No! I have two shrinks on record who have proclaimed me sane and can vouch for me. They can corroborate that this is not a crisis reaction, but a rational and logical decision, albeit based on fear. What am I afraid of? I am afraid of developing recurrent flare-ups. I am afraid of having this illness drag out for years. Most women with Granulomatous Mastitis have recurrences for years. It is not uncommon for the disease to last two years or more. I know I wrote that I would wait this out and give it a year, but, let’s face it. I am not a passive person, therefore I am fundamentally ill-suited to being a long-term patient when the possibility of taking decisive and immediate action exists. To thine own self be true!

I have been a compliant patient. I have tried long-term antibiotic and corticosteroid therapy, even though I was not convinced of the actual need for antibiotics and I wanted to avoid the negative side effects of prednisolone. I have been referred to a rheumatologist, and he wants me to try methotrexate. He argues that it is preferable to prednisolone because it is a steroid-sparing agent. It dampens the inflammation response without the most undesirable side effects of prednisolone (bone loss, Cushing’s syndrome, weight gain). Basically, it spares me all the problems I want to avoid and controls this disease, BUT…

…Methotrexate has some very undesirable side effects of its own. It boils down to choosing the lesser of two evils in a situation where the cure is worse than the disease and can lead to more health problems. So far, I have gotten side effects from every single medication I have taken. Therefore, I cannot naively and optimistically expect that it will be any different with methotrexate. Follow this link, and if these side effects don’t scare the bejeezus out of you, please let me know!

This is the point where I say stop. No way. I have considered the pros and the cons, the risks vs. benefits. I am not subjecting my body to methotrexate. It may be a miracle drug for rheumatoid arthritis patients who need their limbs and dexterity to be functional or for cancer patients who need a shot at survival. It may have even helped a few women with granulomatous mastitis, but it is not for me. I’ve said it before. I do not need my boob. It is not essential for my daily functioning. I’d rather cut it out than take yet another drug that will impair my daily functioning. I am not an advocate of hanging on to non-essential rogue body parts just for the sake of keeping my body “whole,” if it means I have to poison my whole body in the process. This drug is so toxic, that at the beginning of treatment, I would have to have blood tests every two weeks to monitor its toxicity and make sure my liver and kidneys don’t shut down. It will cause hair loss and suppress bone marrow function, which will lead to a reduced blood count. Honestly, isn’t it just a hell of a lot simpler to chop off the damn boob already? Enough!

Now is the perfect time to do it. The inflammation is under control. Surgery à chaud is not recommended, which is why I was denied surgery when I was having flare-ups. As I reduce the prednisolone, I notice that the pain and inflammation are threatening to return. I am certain that I will have another full-blown flare-up once the prednisolone is out of my system, which is what has happened the last few times. If I have another flare-up, I’ll need to take prednisolone again before I can have surgery, so that means one more round on these odious meds. It also means even more time lost to being in debilitating pain, so I’d like to skip that step altogether.

I also have practical considerations. I have a ten-week clinical rotation starting in August. Sometime in October, I have to start my thesis. Graduation is in January, and I can (in theory) start a full-time job as a certified occupational therapist in February. I am going to be either sick and in treatment, or in recovery from surgery (and possibly going through the reconstruction process) from now until February anyway. It’s a matter of choosing which uncomfortable and disruptive situation is more compatible with my plans. Being sick and in treatment means diminished productivity, uncertainty, frustration and prolonged suffering. And at the end, I’ll have the mastectomy anyway. This will delay my entry into my career, not to mention the negative impact it will have on my family.

If I have the mastectomy within the next four weeks, I will be in recovery during my clinical rotation. This works out because this rotation is a desk job as a case worker. I get to work in the administrative end of occupational therapy, which under normal circumstances would bore me to tears, but it’s the only way to make this work for me now. Instead of going to multiple appointments with different specialists, I’ll be going to surgery follow-up appointments, which will be fewer. I may even be able to get the surgery at a hospital closer to home, which would make my life even easier. There was one surgeon at the breast clinic in the provincial hospital who was on board and willing to perform the mastectomy if given the go-ahead by internal medicine.

If I choose immediate reconstruction with expanders, I will have more appointments, but they will be shorter and targeted. There will be a clear goal and a timeline with an end in sight and a measurable, tangible and predictable result. I am aware that there is a risk of complications, but come on! How unlucky could I really get? This is a gamble I am willing to take. I could also have the mastectomy and wait until February to begin the reconstruction process. This way, I can focus on my studies and write my thesis in peace.

The medical journal articles I have read about mastectomy as a treatment for granulomatous mastitis have shown a 90 to 100% success rate. The first thing my GP said to me about this disease is that mastectomy is the only sure-fire way to get rid of it. I want to get rid of it. My current breast surgeon at Rigshospital (whom I affectionately refer to as my good Boob Doc) has argued for a conservative treatment plan. I see her as a skilled and empathetic clinician, I respect her judgement, and I am sure that she wants to provide the best care possible. I’ve done it her way so far, and I recognize that I am getting better. However, because of 1) the likelihood of recurrent flare-ups, 2) the negative consequences of long-term treatment with corticosteroids, and 3) my refusal to take methotrexate, I need to have a serious talk with her now about doing it my way. I hope she listens, and I hope that my left boob will be part of Rigshospital’s pathology lab tissue collection by next month.