Guitars and Broken Hearts

Note: In hindsight, I did not tell this story very well because as I wrote it, I became enormously sensitive about anonymizing the identities of the musicians. This will be rewritten. I also don’t believe the story is over. 

I’ve been quiet.  But I haven’t been invisible.

This was my 10th April since Dr. Overinvolved sexually assaulted me and diagnosed me with cancer, since I survived medical error and anesthesia awareness to find the only person to not blink in the face of my trauma and to offer me a modicum of comfort was also my assailant.

I knew something had changed when I went home six weeks ago. I walked five miles to sit outside the clinic where these things all happened and I felt nothing. I knew the ghosts were there. They didn’t move, pester, poke or whisper a word in my ear. They sat quietly with me on the white brick planter outside the sliding glass doors of what is now an urgent care clinic.  Could this be what peace feels like?

The number 28 has had repeated significance in my life. I was 28 when this happened, I was biopsied on the 28th, and my surgery happened on the 28th.  On this year’s April 28, I went to a concert. All day long I thought about what happened 3,649 days before and how poorly I had lived those days. I wasn’t going to live day number 3,650 the same way. In order to function, I had to push down all that loss: the loss of my trust in health professionals to take care of me when I can’t take care of myself, the loss of trust in male physicians, the loss of trust of any logical order in the world, the looming sense of my own mortality, this feeling of being profoundly and irreparably damaged, the shame at what happened to me, for catching him, for staying, for thinking his good deeds outweighed the violation, for needing someone to be the “good one” at all, for keeping his secret, for never telling the entire story to my therapist because I knew she would report him, for not reporting him for so many years, for reporting him in a cowardly way, for the loss of opportunity and the slamming shut of so many doors.  For who I could have been had this never happened. That’s the biggest one. I remember that girl. She still had dreams and believed they were possible.

The concert I went to that night took place at a small theater in West Hollywood. I made the conscious decision to take off my armor, put my weapons down, and let the music take me where it may. No one sees me anyway so it seemed to be a perfectly safe place to put aside my defenses.  I was assigned to a seat in the front row and lost myself in the music, closing my eyes frequently and even openly weeping.  I remembered being that girl who had dreams when they played “Over the Rainbow” and for a fleeting moment, I felt like a young girl who still believed they could come true.  I’m pretty sure adult me didn’t have any dreams anymore, as my “dreams” boiled down to “make money and keep my health insurance.” I gave up on the dream of more schooling, the dream of meeting someone who could love me that I could love back, the dream of living an exciting and adventurous life, and so much more. It was all just gone.

I thought about that night I was alone in the hospital. It was too easy to close my eyes and see the dark room, the shadows slanted on the wall, the tray in front of me with a cup and a pitcher of water, the television on the wall, now dark, had once been alive with muted Sex and the City re-runs on TBS. A nurse turned it off when I managed to nod off for a few minutes. I wasn’t asleep and heard her hit the button. I opened my eyes when she left and I knew there was no way I would sleep that night, lest something else terrible happen to me.

I also smiled. A lot. It was a magical, wonderful night of music played by people that played in a rock band I LOVED. It was an amazing night, truly. I was also keenly aware of the other grief in the room with all of us; it was so utterly present that I could feel the guitarist’s energy when he was on the stage just feet from me, as if we were on the same frequency.  I found this sense of connection so distracting that I had to instruct myself to turn away from him. But I know he felt me too, as he frequently looked down or looked in my direction. It was cosmic and a little spooky. Without my armor, I think or I hope, I was able to project the love, the light, and the deep empathy I have for him and what he’s going through.  I know a little bit about what it’s like to have the sun rise on what seems like a regular day and by the time it goes down, your life as you know it has been blown to bits, never to recover.

As the concert came to a close, I was in the midst of a standing ovation when said guitarist was suddenly face to face with me. I was perplexed and then he held up his guitar pick. He wanted to give me his guitar pick! I lifted my hand and he pressed it into the palm of my hand with all of his might, then he gripped my hand for a period of time before slowly letting go and walking away. I’ve never been so pleasantly shocked and surprised and I felt this massive surge of electricity through me.

That did it. That broke the spell. All sorts of new portals have opened to me, but most importantly, my heart and my soul are open again. I think my armor and weapons are scattered about La Cienega Blvd as I haven’t worn them since. I’ve had numerous strangers tell me what a beautiful smile I have, how gorgeous I am, etc. That hasn’t happened to me in years. I don’t feel old anymore. I don’t feel anything for Dr. Overinvolved anymore and have zero desire to talk to or see him ever again. That is all just gone, over and done with. I am relieved to have something I want to be gone, finally disappear.

I’m coming back to life. After ten years of all this trauma just imploding inside of me. I saw so many therapists and none of them helped. I took anti-depressants that didn’t help. I starved myself.

I was also reminded of how much I love live music.  I thought it was just one band, but it’s not. It’s all of it. I’ve been to many concerts since and they are just a joy. A couple of times I’ve gone with the hope of seeing this guitarist again because I want to tell him, but I believe he already knows. A bit of a crush now too, but I know he’s just a messenger and not the message himself. I hope I helped him too.

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Silver Anniversary

April 1 marks ten years since my thyroid cancer life began at 12:51pm with a phone call from Dr. Overinvolved.  If he hadn’t been him, if there hadn’t been the anesthesia problems that led to my development of PTSD, this would have been so much easier for me. It would have been like all of the other “easy” accounts of thyroid cancer I have read about. But I was given these people, these events, and this story to tell, something I haven’t done all that well up to this point.

I started to write him but it sounds all wrong. I feel like he’s the one with all the answers, even though I know intellectually he doesn’t have any of them. It’s funny what a little bit of affirmation does to a person when they’ve been treated like they don’t matter for the whole of their lives. It’s utterly hypnotizing.

How does one commemorate a diagnosis you were never going to die from in the first place, but then went completely wrong in surreal and unexpected ways?  I’ve been left with this wreckage to sort through, which was the purpose of this blog, but now I wish it was all in a dumpster waiting for the Wednesday morning pick-up.  The act of sorting through it hasn’t yielded a conclusion to this story, just more questions, more threads, more intrigue.

I need to do something for myself because there’s no one to do something for me. But there’s nothing I want. No thing. I want what I’ve frequently said I want: time. Freedom. A different life that does not consist of drive office gym, drive office gym, drive office gym, ad infinitum until the day I die.  Any thing that I bought would be for that life, the life I just don’t want to live anymore.

So in this tenth year of my thyroid cancer life, all I know is that my life needs to change, something I have known for a very long time. I have tried to change my life and failed again and again. I have reached the end of my resiliency, the end of my strength and as a woman of no faith, there’s nowhere else to turn and nothing else to be done.

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.