Histories; Granulomatous Mastitis II
“Tell me how this all happened.” the specialist asks.
I toggle to the screen with visit after visit, all my doctor’s crisp notes. “I forget the order, details. If you read Dr. Gray’s records- he’s very good at writing down exactly what happened.”
Far better than me, and less likely to get hung with the tag unreliable narrator. We’re all unreliable, especially as time barrels on. The moments of acute pain magnify, the smaller subtle points where we thought a treatment might be working becomes overshadowed by the knowledge that it ultimately did not. And then all that comes out is, nothing worked.
Which isn’t strictly true. Things work until they don’t, and then we shrug them off like old skin and leave them in the dust, snake like, forgotten, until prodded, “Are you sure that is how it happened?”
Hell no. That’s why I found someone I trust to measure the moments. To take the little histories so that when the big histories come up it isn’t really up to me, because all I remember is-
Fourth of July, an angry red swollen breast. Maybe if I ignore it, it will go away. I don’t want to deal with it. I don’t want to be annoying, or be annoyed. I tell myself I’m overreacting as I poke at it, alarmed.
It doesn’t go away.
It gets worse.
I suck it up and see the nurse practitioner at my doctor’s office, who thinks I should get imaging and take antibiotics. I see my Ehlers-Danlos specialist who looks at it even though it isn’t her specialty and she agrees with the nurse.
I take the antibiotics, but it appears my breast has it out for me. The red swollen lump grows. I call my doctor’s office. He thinks I should go to a breast clinic right away. Referrals are made.
None of the breast clinics can see me in time.
I have to go to the E.R. which is like Dante’s Circles of Hell to me. I loathe the E.R. I pull myself together, and there I am in the E.R.
The cold gown, the hard cot, the incessant beeping that makes my skin crawl. The histories, of course, where I stress caution to doctors who make a living being bold- they must be bold. I know that. I hate knowing and the juxtaposition of the knowing about my own histories of other hospitals and bad reactions and cavalier doctors until things go wrong and then. Memories of angry nurses, mad at me for spilling blood or inconvenient seizing or unexplained somethings. More beeping. Curses.
Blood pressure readings. IVs and the tape that I know will leave a welt but there are enough battles so adhesive irritation seems like a minor one.
The waiting. The sounds of other people who maybe aren’t quite as stoic as you, or maybe they just got the worst news or their life. The sound of another ambulance coming in. Life and then…
I have an abscess. They found more deep in the tissue. The E.R. doctor is calling a breast surgeon. The word surgeon makes me panic, but I still try to keep that old style Canadian back of the woods stiff upper lip, but all my thoughts are run on sentences. All my thoughts want to run away from the hospital. I don’t trust anyone here, sorry-
My mind is back at another hospital and another surgery where other cavalier doctors became less cavalier as my stay extended into the ICU. The poor anesthesiologist who checked on me every day. It wasn’t his fault. I hope he knows that, really, really knows.
My cell phone rang.
“Where is my patient?”
Oh, currently battling becoming hysterical in the Lands of Hospitalia, otherwise known as Dante’s Inferno.
No one wants to say that. Although if there is anyone to say it to, he’s probably a good one. The crisp notes he makes aren’t likely to include Patient hysterical for no reason, absolutely unreliable. Call in the white coats to sedate the little mad one, stat.
The second I heard Dr. Tom’s voice, I felt relief. In all the chaos, here was someone who knew stuff about my stuff, and had that whole believably thing down. Holy shit. And he was calling me? After hours? In the hospital? Was I hallucinating?
But I wasn’t hallucinating, I was laughing, somehow, he was cracking jokes and it worked. And then in wonder, I took in the miraculous sight of the E.R. doctor talking to my primary care doctor on my cell phone. It was all very surreal.
He was going to be there for any decision about surgery, and I could stop being so defensive. Someone else had it taken care of. I’d never had any doctor do anything like that before.
This is a Big Moment.
I remember kind of slumping back on the E.R. cot, with the reassurance that Dr. Tom was going to call me back in a little bit, and blinking back tears of- what.
Being able to shelve my scattered pub med researched brain for someone else’s superior-trained, way sharper one who was on my side. More than relief, because of all the years of things being so out of control wrong, maybe that’s why it was such a Big Moment. But that isn’t something I told the specialist for the history, even though it’s the most important. More important than abscesses. It is people choosing to be more than they have to be for others, for no other reason but kindness and curiosity. I don’t believe in magic, but it is close enough to that. Big Moment. Back to the history that supposedly matters…
Surgery was opted out of for the moment because of where the abscesses were.
I had to get a mammogram and an ultrasound.
The mammogram goes down first. Two nurses, the machinery, and me.
I want to be clear that being honest about this one ghastly experience should in no way detract from mammograms in general. This happened under strange circumstances, with my strange body, and I will have mammograms again in the future when my doctor tells me I need to. They are important diagnostic tools. They save people’s lives.
Yet this one particular experience, if I am to share my history…
After, at my doctor’s office, he was training a doctor. Explaining to them what had happened. He read: Gushing blood.
I said, all bravado, One day we’ll laugh about it. He looked pained. That day wasn’t yet.
It was terrible. Terrible. When the machine compressed my breast, the abscess ruptured and it was a blood bath. I’d never seen blood spray from a breast. Now I have.
They sat me on a stool, dizzy, to take the rest of the pictures, mopping at the blood between images. No pain medication.
No wound care.
Just blood and gore.
It was something. A Big Moment?
After the mammogram, it wasn’t over. I should have said this is over. But I had to tough it out, shell shocked, down to to the ultrasound where a technician pressed their wand into my deep wound.
I held my breath. I think I blacked out for a moment. How do you describe that bit of medical narrative?
Dr. Tom said it was terrible to the doctor he was training. His face mirrored what I try not to.
But I am telling you.
When he said it was terrible, yes. It was Terrible.
I think somewhere after that I had more antibiotics? I don’t remember exactly. Time. This is the little moments. How many rounds of antibiotics? Probiotics? I ate non dairy yogurt. Who cares?
I had a fine needle aspiration.
I printed out a card from the Ehlers-Danlos society that explains how people with EDS may need more local anesthesia, or have issues with it. I didn’t remember what happens to me with local anesthesia. I know my mother has trouble with it wearing off before a procedure is done. I was concerned that would happen to me. I’m already in so much pain. I’m not keen on more.
I tried to show the nurse the card, and tell her my concerns before the procedure. She wouldn’t listen to me. She refused to tell the doctor who was going to perform the FNA. I asked if she could call my doctor, then. She declined. Her irritation was obvious as she set up for the procedure.
She left the room and I called my doctor’s office. The circus that came next is a bit of a mess, so pardon me for details. There was phone tag between the hospital, me, and my doctor’s office. The hospital receptionist tried to say my doctor’s office had no doctors’ line to call. It does.
Once again, Dr. Tom talked to a doctor for me on my cell phone.
I heard his voice, and the relief and magic was there again. I didn’t like having a negative interaction with the nurse but it wasn’t her breast a needle was about to be plunged into. A girl’s gotta do what a girl’s gotta do.
I’m happy to report I was numb as I watched the needle on the monitor. Thank you.
I went to the breast surgeon’s office. I was diagnosed with granulomatous mastitis.
They told me to take a high dose of ibuprofen and put a heating pad on my breast.
I went to the breast surgeon’s office several times after that first visit. I had multiple ultrasounds and physical exams. They wanted me to wait it out.
Did I mention I had a hole in my chest? A deep, bloody, raw hole? It hurt, in that throw away the pain scale kind of way. I tried the heating pad. It was torture. I tried the ibuprofen. The ibuprofen made my stomach hurt- I have gastroparesis and whatever benefit I may have gotten from the anti-inflammatory was offset by nausea and vomiting.
Waiting it out did not seem like an ideal option to me. I went to Dr. Tom with my hole in the chest dejection, layers of hoodies hiding the mess of my breast.
I shed layer after layer, peeling my shame, explaining the failures. And he saw the wound.
“Does it hurt?” he asks.
No scale. No qualifications.
“Yes.” I say. “Yes, it hurts.”
“You have a hole in your chest,” he observes. “It looks like it hurts!”
Another Big Moment. He gave me pain medication. He looked up what we could do besides nothing. He found prednisone and methotrexate.
We needed a rheumatologist.
Dr. Tom made the referral. I was- what is the word- stunned- when I was informed by the rheumatology clinic that because I have Ehlers-Danlos syndrome, none of the rheumatologists would see me for my autoimmune condition.
Dr. Tom wisely pointed out that if they didn’t want me, we didn’t want them.
He filled out paperwork for my first choice rheumatologist, Dr. Shawn Macalester DO, who is out of network for me. Little moments, waiting, waiting, for approval or denial, and obsessively googling the clinic doctors who turned me down. Finding out they turn down every patient with Ehlers-Danlos syndrome. I wondered what they expect EDS patients with autoimmune conditions to do who are stuck with only them as options? No wonder some people turn to snake oils and crystals instead of prednisone. They literally have no choice.
I understand that sometimes the best thing a doctor can do is say, hey, I can’t do xyz because I don’t have the experience and could hurt you. That happened to me with a kind neurosurgeon and tethered cord surgery. I respect him for knowing his limitations and not being reckless.
But a whole practice of rheumatologists opting out of patient care for anyone with connective tissue disease? Come on. That’s like if I would have said, as a young hair stylist, sorry- I can’t do perms. I wasn’t around in the eighties. I’m afraid I’ll melt your hair off with the solution. Technically that could happen.
Or I could do my homework, get a mannequin head, and practice rolling perms. I learned how to do it so when little old ladies came in I could give them perms or wet sets or what have you. I learned how to style African American hair. I learned hair extensions. I didn’t tell a client No, you are too hard because that’s lazy cosmetology. And oh boy, did I see others do that.
It’s fine to not know. If you want to learn, there are resources. Physicians can go to the Ehlers-Danlos Society website and sign up to Project Echo for free.
It seems cruel in a world where insurance dictates you must go to certain specialists that whole practices can opt out of even consultations, leaving patients who aren’t as tenacious or have access to the amazing primary care doctor I have to suffer with diseases on their own.
To insult those same patients for turning to alternative medicine is cruel. Step up to the plate and bring a solution or you have no right to be condescending towards them. Ask yourself what you would do? Would you turn to the dark corners of the internet seeking out ways to bring painful inflammation down? Would you do almost anything to stop abscesses from boiling over? Would you fall for a comforting lie? I’m not too proud to say that in desperation, of course I would do desperate things. That becomes a Big Moment, where one need not be. And how we fail disabled people as a society. Waiting for them to wade into the murk, push them down, drown.
Easier than wading into the dark waters of I don’t know with slides of cells, to stay in certainty. But certainty is stupid, I’m telling you, certainty is certain to be hiding you’re wrong, you only saw one piece of the picture so far.
Pictures change with time. We learn more things, we expand, even if we aren’t looking- but when we do… It is a bit better.
I’d had a few other offices decline to see me by this point, so I called Dr. Macalester’s office and asked if he would see me with my conditions. He said he would, that if he didn’t know something he would try to find someone who did.
That is the stuff.
The kind of thing I used to tell clients in my chair when they showed me something I was baffled by.
What happened next- Time is blurry, like my eyes. Even all the things I’ve said so far, maybe it could be shifted around like a rubik’s cube. It happened, but in this exact order? Maybe, again, look at my doctor’s notes if you want precision. I’m not as precise. I’m more like historical fiction, where for emotional impact battles may have to be moved around. I don’t know.
What happened. It was Covid-19 time, so we did virtual appointments. I made tea, very important, beforehand. I try to write things down in a little moleskine notebook so I recall what I want to say. I’m bad on the phone, who knows why. I’m probably bad in person too. I lose my train of thought, and I think of the phrase train of thought and suddenly I’m picturing a train barreling through the room, smoke billowing, the noise- yes, this is why I need to write things down.
Dr. Macalester is calm and easy to talk to, which is good for an imagnative and awkward person such as myself. He throws in fun details about the history of drug development to ease the transition to methotrexate. For a geek like me, getting to hear things I don’t know presented in interesting ways is basically catnip.
We tried the pills first. Prednisone and methotrexate pills.
Little moments of side effects, which add up to a Big Moment- realizing methotrexate drops a dark cloth over my brain, stifling thoughts in a way no other drug I’ve been on does. I curled on the coach, sucking on my zofran, throwing up anyway, touching my tongue to mouth sores and leaving tarantulas of hair behind every time I moved.
I had a phone call visit with my Ehlers-Danlos specialist, Alena Guggenheim, ND who cheered with me that I’d managed to get Dr. Macalester. She suggested ginger and some other things I’m forgetting as it’s been awhile ago, but overall the memory is of her caring, energetic voice- such a wonderful thing to hear during the drudge of months of quarantine.
Dr. Macalester gave me MTX support, which helped the mouth sores, and suggested trying methotrexate injections. Injections! Oh, I was a terrible coward when I heard that.
Growing up, my mother made her fear of needles mine. She did everything to avoid us getting wounded by a needle. Now that I know she has Classic EDS and her fragile little veins tend to rupture I get where she got her fears. But it is a bit different, injecting methotrexate.
In bizarre world, leaving quarantine to go to Dr. Macalester’s office to learn how to self-inject was an adventure. I was going to see other people! Oh! Real people!
His nurse was very kind, explaining how to pinch my skin and fill the needle and all of it. But to be frank, I missed some of the lesson because I was buzzed simply being in a room with another lady after months and months without. Her voice! So cool! Her eyes! Oh my GOD! I’m an introvert, but even to me, it hammered in what social creatures humans must be.
I ended up having to watch videos on injection on the internet. Completely worth it.
I quickly learned my preference for the needles that came from Dr. Macalester’s office. His were sharp and went right in, and pushed in much easier. The ones my pharmacy sent sucked. It truly is the little things.
With methotrexate come labs. The idea of going to the regular lab grossed me out, but thankfully I could go to Dr. Tom’s office to get my blood work done. Leaving my quarantine feels naughty, a bit, even though I only do it for doctor offices.
Go ahead and blood me so I can look at you! I even enjoyed the color of Dr. Tom’s wall. It wasn’t my wall.
My stomach began to hurt more and more. Then in a way I couldn’t ignore. I started taking medicine for ulcers. I had to stop eating tomatoes, which seems little, but made me realize how much I like tomatoes. Raw, roasted, sauced. Alas.
We decided to finally taper off the prednisone so I would only take methotrexate.
I got another abscess. I closed my eyes, wanting to unfind out about it. There is nothing more frustrating than an abscess, unless it is an abscess in a location you’d rather not show anyone.
It was blood work time again, so I considered my options. Ignore it and let it fester? Yeah, because that always works out so well for me.
I dragged myself to Dr. Tom’s office. I got my blood taken. I tried to take my pleasure in his wall, in the presence of another person. I confessed to the nurse that I needed to see Dr. Tom because I had an abscess.
I sat in the chair, uncomfortable.
He arrived. Time is like this for me, past and present tense, slippy. It’s fine. Slip through it.
I acknowledge that I have no dignity left with him, which is good.
Always good to not bother with social constructs of dignity and shame with your doctor. They get in the way, they waste time, they-
I noticed Dr. Tom was wearing black scrubs and a mask. He usually wears regular street clothes. Scrubs look more comfortable. I think if I were a doctor I would never not wear scrubs. I think of everything but the thing I have to get to because I hate getting to it sometimes.
“I have an abscess on my labia.”
The great thing about Dr. Tom is he isn’t a overreacter or an underreacter. Finesse?
He got to work trying to find a gynecologist or female doctor who would drain it. If he couldn’t find someone, I would come back after his last patient of the day and he would do it.
On one hand, damnit. Not a pleasant time, but as he said, we’d have all the nurses there and make a party of it. Why not. If you’ve never had an abscess you may not know why party is an apt- even if dark humor- sentiment. The relief of draining it… That is worth celebrating.
So we tried the other doctors. He called around, I called the urogynocologist I’d went to last year. Her receptionist informed me she only did urology. I sputtered into the phone, remembering the pap smear and how she’d agreed to be my gynecologist. Oh well.
Thus, the end of my doctor’s day came up and I showed up to make it a bit longer.
Have I told you how much I appreciate someone who would do that? I do. And appreciate the careful cuts, the culture, the lidocaine and kindness, and making me feel like I wasn’t gross… The nurses and their efficiency.
Next up came the antibiotics. No methotrexate while on antibiotics, back on prednisone.
It appeared to be working, but the abscess was like my breast abscesses. Unwilling to surrender. It came back.
I talked to Dr. Macalester. He and Dr. Tom worried about it following the same trajectory as my breast abscesses. Granuloma?
He got me in to see a gynecologist to make sure it was an abscess and not a cyst, a fine feat, as I could not seem to get an appointment myself. Abscess confirmed.
I finished one antibiotic and started the next.
I started throwing up and then I was on the toilet throwing up in the bathtub. I did not want to go to the E.R.
I felt like maybe I ought to go to the E.R.
I went to Dr. Tom’s office instead. He wasn’t there, but his brother kindly saw me. I regret to say I made his acquaintance by hurling into a small pink garbage bag.
I stopped the antibiotic.
I continued the prednisone.
We’re almost caught up now. I got an ultrasound to see if the pain in my breast is abscesses or scar tissue or what?
Dr. Tom looked at the ultrasound and thought it looked like scar tissue and inflammation. But the abscesses are cleared up for the moment! So that is something. For all of methotrexate’s side effects, I have to admit that is impressive.
I have round rashes. Are they granulomas?
What was that?
You don’t know.
If I got a mastectomy, would the resulting scarring leave me in the same place of having continuing pain?
You don’t know.
I was allergic to the last anesthesia used in surgery, is there a way to know if I can have surgery in a safe way?
You don’t know.
When my mom has surgery, her veins rupture. Is this likely with me or is there something I can do to minimize this risk given our genetic history?
You don’t know.
I don’t know either. It is like histories, we’re always having to take up the torch and try something. We only know when we look back, I guess, and by then things have obscured. We make our best guesses based on risk and reward.
I want to be medically conservative until conservative is unlivable. Aggressive has other consequences.
I should do surgery to cut out the abscess, the specialist says of my labia. If it were going to heal on its own, it would have. Be bold!
I have the history of my breast. It took months.
I am the specialist of myself.
“I’m going to talk to Dr. Macalester. Thank you.” I say. It is important to say thank you.
I still prefer ‘I don’t know’ to a certain lie.
And so, I wait.