Finding My Limits

The worst years of my thyroid symptoms were when I was first diagnosed with Hashimoto’s Disease. I felt fantastic the day I was diagnosed with thyroid cancer, probably the best I had ever felt physically, and that continued until  the period of hypothyroidism I experienced in 2014, a problem that happened because Levoxyl was recalled and my terrible UCLA endocrinologist refused to retest my TSH after putting me on Synthroid because it’s “all the same.” That genius was also testing my TgAb on a lab assay intended for those with a thyroid and it had a lower limit of 20 (!!!!!), so I appeared to be cancer free. Au contraire, mon ami!

But I digress.

I never fully recovered from that period of hypothyroidism. I have experienced severe fatigue, water retention/bloating, darkened moods, and digestive issues.

I recently started a new job. The commute is three times longer than the old one, and it is going to be a lot more pressure-filled. Today was the first challenging day I have had, being new, and I do not think I am up for this anymore. I don’t think I can do it. I am always tired. I have to get up early no matter how I time my workout (am or pm) and the workouts are not-negotiable. I have no patience and cannot tolerate the tedium of office culture. I just want to do something, check it off a list, and move on.

My career pre-dates my thyroid cancer diagnosis by a few years and was always meant to be a stop-gap measure, until I went back to school, having failed out of my graduate program from the ravages of Hashimoto’s Disease. Yet, here we are. My energy levels, both physical and emotional are low. There is no way to recharge them, as this routine is endless. On paper I look like an accomplished professional woman; there is no hint from my resume that I was ever sick. I make more than enough money, but I don’t care. It’s meaningless to me because I can’t buy what I really need, which is time, time to figure it all out, because I have never had that luxury.

As for my limits, they are in sight. I could fake it through a day of feeling rough at the last job if I needed to. I also had twice as much PTO at my disposal, and often used it when I felt I was experiencing a “bad thyroid day.”  That has been cut in half. I try to imagine tolerating even two years of living this way and I can’t imagine getting past next week.

My ambition, like my physical and emotional energy, seems to have reached its limit as well. Obtaining a graduate degree feels woefully impossible in this state, as it has felt for a long time now. I want to write “I don’t care about it anymore” but I still do, because it is something I want to do for me, not for a job, which has turned into a boulder that is in my way.  The job is the obstacle, and so my only ambition now is to not have one at all.


Donning the Fuchsia Smock

I had just returned from Europe, was severely jet lagged and running a fever. The scheduler at UCLA Radiology had been kind enough to find me a timeslot before I started a new job in four days. The consummate multi-tasker, I had also dropped off my aging car for work that morning, and navigated the north 405 in a large loaner vehicle. I parked it awkwardly on the top floor of the parking garage in Santa Monica, hoping no one would try to park next to me.

There was nowhere for me to sit. The waiting room contained six chairs, far fewer than your typical radiology suite. I stood in the corner and filled out the questionnaire, What age was your first period? Have any of your blood relatives had breast cancer? Do you have any symptoms?  I was eleven. My mother’s cousin. I can feel a hard lump in my left breast.

I was called back, and led into a changing room with lockers where I tied a fuchsia smock around my waist. I went into waiting room #2 and again, there was nowhere to sit. The room was filled to bursting with women of all ages, eyes mostly downcast, some carrying distressed expressions on their faces. One talked loudly on her cell phone, revealing that she had done this before and didn’t have health insurance. She let us all know she was waiting for biopsy results. I found this perplexing. In the breast cancer imaging suite you can sit and wait for biopsy results? What land is this?

There was a “serenity” fountain on the wall, made of two rectangular slabs of rock with water cascading down into a small rock pool below. I thought they looked like tombstones in the rain. I began to feel a ball of anger taking shape inside of me, and I fantasized about smashing that fucking serenity fountain with a hammer. Serenity this!  I wondered who the donor was that funded it, and if they had the opportunity to approve of the design.

Despite the waiting crowd, I was called into the mammography suite within ten minutes. The technician asked me where I felt the lump and placed what looked like a piece of scotch tape on the bottom of my left breast. I told her my primary care physician didn’t feel a lump, but that I had thyroid cancer in my 20s and had a pre-cancerous polyp removed from my colon four months prior. Essentially, I was there to perform my due diligence. She praised me for staying on top of my health, and I felt good about my efforts, a rare feeling.

After the mammogram, I was sent back to the waiting room where many of the same besmocked women waited. Because of my age, I was now waiting to have an ultrasound. I quickly gathered, based on comments to the nurse, that most of them were waiting for their turn to be biopsied. I looked around, taking everyone in, their fuchsia smocks topping yoga pants, a pencil skirt, jeans, sweatpants. Most carried expressions that said they expected to be led to slaughter. I also wondered whose money purchased the fuchsia smocks, Komen? They were heavily performative in their femininity, clownish, even. The gendering of the disease made me angrier. Bitches love pink, right? Nevermind men get breast cancer too. I once read that pink is used in hospitals and prisons because it makes patients and prisoners less aggressive. Perhaps that was the idea here all along.

Following the ultrasound, a pregnant radiologist came out to speak with me. Everything was clear, and I have a favorable type of breast tissue that makes it easier for breast cancer to be detected. I was relieved, and then confused, walking into the wrong changing room in my eagerness to shed the fuchsia smock. A calm, collected elderly woman told me the numbers on my locker key would lead me to the right changing room.  I quickly donned my civilian accoutrements and sped out of the breast imaging suite, grateful to be continuing my existence in the same familiar, colorless town in Cancerland.

Tom Petty Died & I Can’t Stop Crying

I waited. I knew I needed to go to bed. As dusk faded into night, my living room lamp turned itself off at the scheduled time. Still, I sat. I had to hold vigil for Tom and this was the only way I could do it: waiting for the official news that I knew was unavoidable.  It hit the wires at 9:10pm.

Tom Petty Dies at 66.

Tom Petty Dead.

Tom Petty 1950-2017.

I burst into tears, and cued up “Southern Accents,” which I played five times in a row while I sobbed loudly. I already sobbed for nearly an hour when he was first reported to be brain dead. I knew what that meant. I sat in my office, nauseous. This one was going to hurt. A lot.

Highway Companion was one of my cancer albums. It’s like taking a road trip to the past while simultaneously getting up off the floor, brushing the dust off, and preparing to carry on with it all. It crystallized the trauma I had suffered, the joy and the magic I felt with Dr. Overinvolved, and the sense that maybe I was already on the shorter side of my lifeline. I was flirting with time, as one of the songs from the album says, a song that has such a joy to it that I often spun around across the linoleum floor of my kitchen during the guitar solo.  Somehow, nothing was all that different. I had crossed the street, that’s all, with my little neck scar slathered in scar lightener and sun block. It made me think, it made me look to the future with a bit of optimism, it stoked my affection for Tom and his talent for writing songs that translate to so many different life situations.

Tom is now gone. He wasn’t an immortal balladeer who would always be here. He did the thing human beings have been doing for awhile now: living then dying. And so, I cry in the car at red lights, leaving Trader Joe’s, when I see more “Tom Petty Dead” headlines, when I read about all of his plans in his last interview, at the gym, when I listen to “The Golden Rose.” I keep checking the headlines as if they will morph into “Tom Petty Alive.” They won’t. Tom Petty will now always be dead.

Most of all, I am crying for me. I am so scared of my mortality, of it all ending, of missing something.  How could death happen to such a good guy like Tom, anyway? That’s the scariest part of it all: it doesn’t matter.

Oh Tom, thank you for being one of my musical cancer co-pilots and for being so damn relatable that I felt like it was all written for me.

The Doom in Song

I applied for a job back home tonight. It’s part time with health insurance and pays me what I was nearly making when I left. I could live on it. I would have the energy to create the life I want to live and have my bottom line covered.

It is with this pot simmering on the back burner that I revisited one of my favorite pieces of music tonight. The Philip Glass compilation, Solo Piano, was my constant companion while I was suffering from acute stress disorder.  The repetitive simpleness was soothing to my brain for reasons unknown to me. It’s serious and grand. The huge claps of doom in the minor notes mixed with a gorgeous complexity that captured the crux of my emotional tornado. I listened to nothing but that for months.  The last time I felt the urge to play it, I didn’t progress past Metamorphosis One as the darkness and wonder of those times was too much for me to sit with. That was not the case tonight. I made it all the way through, viewing my emotions from a safe distance. It was not enjoyable, but it did not elicit such a strong reaction that I had to turn it off. I could describe how I felt and what drew me to it so intensely. I was testing my emotional distance.

One of my favorite people from my current job said to me on her way out the door, “You need to find a way to be okay.”  I have been barely functioning for a long time, I know. I have not been okay in years. I was simply not allowed to grieve my losses and that’s the biggest reason that I am not okay.

As I have done my best minister to the bereaved grief of my two friends, my resentment has blossomed. One expresses her grief in a performative manner and I have little tolerance left for her written hysterics that are smeared all over Facebook each day.  I can’t even leave her a little heart emoji anymore, which signifies I read her post. She was dismissive of me; we lived less than ten miles apart and she made no effort to visit me for the two years between my diagnosis and my moving. She was mad when I called Melinda (BFF, deceased husband) to take me to Trader Joe’s when I was still taking narcotic painkillers and unable to drive. And Melinda herself was always telling me to think positive. She was the person I called after I talked to Dr. Overinvolved and it was “think positive, you’re fine, it’s going to be okay.” I do not go near the family because that well is dry, dry, dry. There’s no empathy there, let alone understanding.

This morning when I was trying to workout in a gym that I really do not like, I kept thinking about how I need me again, and did I leave me behind somewhere, maybe…back home? I know that if the circumstances arise and I am hired for this role, I will certainly see it all through very different eyes; I have grown here in so many ways, but I hope me is somewhere, on a trail in Balboa Park or on the dragon-shaped running path at the Lake. Perhaps me is out in the east county mountains I have never explored. I need to find the place where my life, my journey does not feel like it has been in vain, the place where I can be okay again.

Watching the Years & Waiting

On this, the occasion of my follow up appointment for year 9.5 with thyroid cancer, I am aware that my cancer may be declared a benign condition during my lifetime. The frequent appearance of a research study about benign thyroid cancers is then quickly followed by an avalanche of news articles. Last week it was about “watch and wait” for all papillary tumors under 1.5cm, which are categorized as “low risk.” I have been in the survivor community long enough to be able to tell you this is not a sure thing and that I know of people who had tumors under that threshold who had second and third surgeries and multiple rounds of RAI. My tumor was 1.4cm and was on the verge of growing outside my thyroid. Would I have been called low risk and told to come back in six months? Would that have made any difference to where my life is today? I don’t know.

What I do know is that I continue to be that 37 year old woman who cannot be declared NED. Nothing has changed except my age and I know as I age with an empty uterus, empty left ring finger that I become less and less sympathetic to the patriarchal medical system.  Dr. Overinvolved showed me that I was only worthy of his attention and kindness when I fit the narrative, i.e. I was a reasonably attractive young woman with a “normal” body type. I’m not here for this anymore.

I also know that I continue to struggle with finding my place out in the world. There is the life that I am living, which is often small and limiting. There’s the many lives I dream about living, which are large, loud, and expansive. I continue to search for a new job while also possessing a wandering eye that has not given up on the dream of studying social work and public health, of making jewelry for pay, of being a freelance writer, of learning to weld and make metal art. I want to do and be all of these and my anxiety, anger, and disappointment take up so much room that there is no room for much else.

The wound healed. I can feel it, I can see it, but it is in a very tenuous state, a state that it will likely maintain for the rest of my life.


The Patient With PTSD Finally Has a Colonoscopy

After months of waiting, months of thinking “I could just cancel it,” months of occasional overwhelming anxiety, I finally had the colonoscopy this week.  I was up front with all of the staff about my anesthesia incident and they were excellent. I spoke with the anesthesiologist beforehand as well.  I had no problems at all; they only gave me propofol and it was lights out. When I came out, however, I was crying and gasping for air. Not sure why?  I wasn’t afraid though. Obviously this wasn’t general anesthesia but  it was night and day compared to the absolute terror I felt that day and it underscored the fact that it was terror I felt.  I had no nightmares when I slept after the procedure either.

The downside is that my GI removed a couple of polyps. Now, I am in my 30s. This is Not Normal. They were both small and one so small it is extremely unlikely to be malignant. The other one is a mystery. It may or may not be malignant so now, it’s the waiting (cue Tom Petty). This also makes me really glad I went through with it. I will surely have to do it again well before I am 50 (the age when screening starts for those with normal risk in the United States) based on the discovery of polyps alone, but how soon depends on the pathology report. How urgent my demands for genetic testing will be also depend on this result.

Now I think I have a small base of trust and a good experience to build on for future procedures and/or surgeries, which seem inevitable given that I have a body that seems to be much older at the cellular level than my chronological years betray. I can only hope that maybe it will help with some of my other physician trust issues and propensity to cry and/or become extremely irritable when I have medical encounters.

Trauma Everlasting

If I were to draw my medical trauma, there would be three lines. One representing the cancer diagnosis, another for the medical error, and the last for my relationship with Dr. Overinvolved.  They would only be parallel for a short while before twisting into each other like a strand of DNA, becoming one spiral.  I find myself tangled up in this spiral again as I stare down the eve of my colonoscopy.  I am not hopeful that any of it will go well. I am expecting the sky to fall again and am bracing myself for the crash.

I baked cookies earlier for a friend of mine who is having a cancer scare of her own. I also had a rare flashback while standing in the middle of the kitchen, red spatula in hand. I stopped dead in my tracks. Dr. Overinvolved was standing at the sink and washing his hands, talking to me over his shoulder, looking back at me and saying, “There’s a 10% chance you have thyroid cancer” and it was the first time he had ever said  the word cancer to me and I remember at the time feeling shock and disassociating at its utterance. I was sitting on the table in that exam room, he was to my right. It was like I was right there again. I could hear his voice, feel that shock.  The baking stoppage was very brief as I immediately recognized it for what it was- a flashback -and quickly pulled myself out of it. This wasn’t the first sign of triggering. I had a medical nightmare a few nights ago, also a very rare occurrence these days. It was general- just an examination room and a table with one of those huge OR lights over it. That was enough and I forced myself awake, breathing hard.

I am on a low residue diet now, and as a veteran of the LID, even being on a medically restricted diet is bringing me back to when I had RAI treatment- how hungry I was, another surreal and inappropriate go around with Dr. Overinvolved, leaving radiology sobbing after being scanned multiple times for reasons that they refused to explain to me. Dr. Overinvolved being mean and dismissive when I told him about this and how I subsequently felt crazy.

There’s just so much to avoid that being triggered is a guarantee. None of this surprises me at all. It happens, it briefly takes me down, but then I get up, smooth my skirt, and keep going. There’s no other option.