Flight & Farms

I wrote my last post on my phone, which is something I do a lot these days.  I hate typing on my phone. I am trying to instill more discipline in my work life by not logging onto any of my personal sites on my desktop. They told me they don’t care as they know everyone has Gmail and Facebook open in other tabs, but I know that if I do the same, the next time I look up, it will be time for lunch.

Back to year ten…I underwent my annual neck ultrasound last week. My age is wrong in the results, and I realized it’s been that way a number of years now.  I am listed as a year younger than I am, and it always says “thyroid gland absent” as if this is a revelation. There have been years I was indifferent, and years where I have been wound up so tight  I explode at someone, usually myself. I hate myself for this. I am unable to forgive myself for this. Despite everything, I still think I control my fate.  This year I was indifferent, through the different transducers. the color doppler studies that were only performed on my left side, the tumor’s side. And when the results came in that said I am 37 and my thyroid gland was absent, there was nothing else to say.

Clear. Next.

For the last five years of my working life, I’ve been hoping for a recurrence. I want to be pulled out of the limbo of a “biochemically incomplete response.” I also don’t want to go to work and would rather have cancer again then continue on in my current career.

I’m going to say that again.

I would rather have thyroid cancer again than continue in my current career.

I remember how happy I was to go back to work after the first time. I was amongst friends, it felt normal, and very little was asked go me in those days. Since then, none of my workplaces have felt that comforting. It was likely an anomaly. I was a sympathetic figure of course, 28 years old, losing weight (yay women who find a way to meet conventional beauty standards!) and coming into my own. Or so it seemed. In hindsight, I was veering off the road. My life in Los Angeles can be summed up in one word: isolation. In every sense of the word. My only connection is to the mountains and the hiking trails I race up and down on weekends.

I have examined the reasons for my leaving many times; it was an idea I was already trying to put into motion pre-cancer; I needed a change; I needed to leave the place where I had been sick; I needed a new challenge at work (let’s be honest- I can barely work; I spend more than half of the week doing nothing because I can’t focus); and of course, I needed to save myself from the Dr. Overinvolved situation and physically removing myself was the only way,  as my own dysfunction and damage pulled me towards him with a force that felt as strong as gravity itself. I knew I was the one who had the power to change our fate.  But I’ve missed him everyday since. I thought I would meet someone appropriate who looked at me the way he did, who made me feel seen and heard, who was comforting, whom I wanted to know back.  But I’m invisible, back to not being seen, and so lonely.

What do I do? Go home? Go somewhere else?

In 2011, I was accepted to a post-baccalaureate program for pre-med. I didn’t go. Because money and fears about health insurance. And fears in general.

In 2015, I was accepted to a dual degree MSW/MPH program at a top five university. I didn’t go. Because I would have been destitute.

Given the cost, further education is no longer an option. I also believe I have lost the patience to tolerate the grind of such rigid structure. The rhythm and predictability of the professional office life is part of what I am chafing against, after all.  Forced into this, forced into that; it doesn’t feel like something I am doing willingly at all anymore. It never felt this difficult before and that’s how I know I am at the end of this road. I thought it was just my last role, but it’s this entire field. It’s everything.

One of the drawbacks for all the travel I have done is that I want to keep moving, see more, then pick up and see more, rinse and repeat. But that desire doesn’t fit with how I have to live, or how it seems I have to live, in order for all of my other needs (money and health insurance) to be met.  I have enough money to do this on the short-term, to move out, lock it all up and hit the road, but it’s not sustainable of course. When I draw the escape map, it always lacks an ending because the road ends at another cubicle farm.


Ten Year Loneliness

I stayed in bed an hour past the time I should have arisen. What if, I thought, what if I just don’t go, what if I just never go back? I thought about my savings account and how I could live off that money for five or six months. But I eventually kicked back my blankets and made it into the shower, skipping breakfast and throwing lunch together.

I have this conversation with myself nearly every weekday since I started the new job. It’s fine but I don’t want to do it, or this career, anymore. I’m tired of the petty jealousies and criticisms, of being forced to sit here all day, of being so worn out from forcing myself to hold it all together, from hiding my true feelings. I just want to scream.

My ten year follow up testing is this week. I want it to be bad. Because then it could finally be treated, then it would be okay if I just stayed in bed and never went back. I would be allowed to burn it all down and start again.

I’m trying to just get through this before I make any decisions. No one knows. My family doesn’t know, my colleagues have no idea, and BFF Melinda is too busy hanging out with guys and being tattooed to talk to me. I don’t know if anyone knowing would help. Other people are usually not at all comforting. I wish I had a husband.

A deep loneliness is at the heart of my emotional state overall. My prior colleagues were my friends and we were all up in each other’s business. I haven’t heard from them. That’s how it usually goes- rare is the work friendship that becomes a real life friendship once the work association has ended.

A Dream Without Armor

I dreamt about you last night, standing behind the pharmacy counter and handing me my bottle of Levoxyl. But you don’t test my Thyroglobulin anymore, you said.  No, you don’t. You haven’t tested it in eight years and your test was wrong anyway, creating a false sense of relief, of safety.  You were too young in my dream, but your voice, your frame, your gut feeling of presence was all accurate.

I feel inspired to write you a letter, a real one on paper, with details of my travails and my woes, of how my greying hair finally makes me look the age I feel inside, about the grief I sit with everyday over what could have been and now what never will be. It is year ten, so a retrospective feels appropriate, yet I imagine you will be disappointed I didn’t make more of myself.  I could have, with someone like you, but it was all me and one person can only take themselves so far. Despite knowing that, I still believe I can do it all.

In your gaze, I always saw myself without armor. Now my own gaze only reflects my armor and my weapons. I have lost her again, I know, I can tell. Maybe you can help me get her back. The years will always be gone, of course, but the ones ahead would be so much better if I could be the girl without armor again, to feel that wonder, lightness and optimism, instead of being hard and grizzled, with all of that behind me. I believe it is lost forever. I cannot imagine ever feeling that way again.

My #metoo

Yesterday’s statement from Eliza Dushku about being molested by her stunt coordinator when she was twelve really messed me up. Especially, “…my life was literally in his hands…whereas he was supposed to be my protector, he was my abuser…that over-the-top special attention he gave me… ”

What Dr. Overinvolved did to me was so lightweight but he still breached the trust, the boundaries,  he still assaulted me and then continued to groom me. I knew it, I saw it and that’s why I ran, while at the same time basking in the attention. Like the abused child I was, I was desperate for positive attention and support. I wasn’t getting it from my crappy family and my friends were all inept/scared.

My stomach hurts.

Everyday, especially since #metoo has taken the news cycle by storm, I expect physicians to start decorating the headlines with their indiscretions and abuses finally being known to all, and him in particular, because it never happens once. Each day, I think, “Is today the day?” But it isn’t because they literally have our lives in their hands; they have the real power, so much more than a Harvey Weinstein, a Matt Lauer.  When women can speak out about their abusive physicians and how their behavior wasn’t “bad enough” for the medical board to act on, then I know a true reckoning will be upon us.

I want to stand arm-in-arm with all of the others- strength in numbers. I cannot and will not stand on my own with name and face, then medical records and sexual history shortly to be known to all.  My PTSD history, and many other things, will be used against me.  My anonymous complaint is as far as I can take my activism alone; the deep ambivalence written into that complaint is a red flag to anyone who knows how sexual abuse victims act and how abusers ply their trade. But years on from that complaint, he still gets up in the morning and treats patients, some of them just like me- vulnerable young women with thyroid cancer who have no support system.

I know I have done all I can do to draw attention to Dr. Overinvolved’s abuse, so it is now up to someone else to pick up the whistle and blow on it as loud and as hard as possible until his name, and other physicians like him who have been getting away with this for far too long, are all over news headlines.

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.

Catch Up

My silence hasn’t been deliberate, but more the product of too much going on, too much to write about it, too much spinning through my head.

I still cannot believe Tom Petty is gone. That was my last post and his is a cosmic absence that I struggle to comprehend.

I left my job for a new one in health care, non-clinical, pediatrics.

I followed my band to Europe in between jobs, after I said no to everyone- old job wanted me to stay longer, new job wanted me to start sooner- and I had three weeks off.

My immune system swooned from the jet lag and lack of sleep and I have been sick twice, new fevers appearing ten days apart, and I am still not well. My throat is very painful, but it is a deep pain, low in my neck and it is worrying me at present. With the new job, I have no sick time and no vacation time, so it would be a grand time for a cancer recurrence. I took a flu shot in October, but the second sickness was influenza-esque, the first more like a bad cold.  I get sick like this perhaps every two or three years; twice in a month seems excessive. I am around a lot more people in a new environment and perhaps I was immune to everyone’s illnesses at my old workplace!

I underwent a mammogram two days after I came home from Europe, an experience that enraged and upset me in countless ways. It truly was “A Tale of Two Cancers,”  as I compared and contrasted the experiences in my mind. That will be a future post. It all turned out fine, there was nothing to see and now I have a baseline. No regrets about it at all.

Now with the new health care job, I feel like I am hiding in plain sight. No one knows my history and my scar is essentially invisible to strangers. I have a hard time going into the hospital and steel myself each time, yet I can think of no better way to help make the world better, no more worthy cause then helping these children get the healthcare they need. I truly think that’s our purpose; or at the very least, my purpose; in the world- to make it a better place.