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.

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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.

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.

 

Outing Myself

My department is going through a period of expansion, so every couple of weeks I have a new colleague. I am long past the point in my recovery/survival where I need to talk about cancer all of the time, thankfully.  So I go through introductory meetings, pretending like I am just a normal aging career woman without a husband or children to tend to, talking about the work that I am more and more burnt out on with each passing day, pretending like it’s really great and I love it.

There’s lots of pretending going on, overall.

A couple of weeks ago, one of my new colleagues said she was going to San Diego to be with her mom who was being treated for cancer where I was treated.  I thought I did very well, grinding my teeth, clenching my jaw and nodding and wishing her mom the best while chanting in my head, “Don’t say anything don’t say anything don’t say anything don’t say anything.”  But even hearing about That Place had a trigger effect. Cancer and the anesthesia incident were all I thought about the rest of the day.

Then it came up again today, when someone asked how her mom was doing. She said they are unhappy with the care she received, that first they said there was nothing they could do and then they miraculously had a chemotherapy to try. She mentioned a resident was running the show.

Cue the teeth grinding, but for slightly different reasons this time. My colleagues dispersed and I put on my best social worker hat, asking her if she had obtained a second opinion. She said they hadn’t and I said going across town might be an option  (memories of Dr. Second Opinion), especially since it sounded like there were reservations about the care her mom is getting at That Place.  Then I outed myself. I said that I was treated for a different kind of cancer at the same place and it was not a good experience. My story tumbled out in globs and drips like a Pollock painting. I managed to fit in there the time I pursued a second opinion and how much peace of mind it gave me, after so many years of questions and inconclusive test results.  I wished I had done it sooner. She thought this all sounded like a really good idea and she’d see if her mom was interested.

I’m happy to out myself if it has the potential to help someone else. Our healthcare system is so complex that informal crowdsourcing is the best way to learn about our options. I have few worries about being treated differently as a consequence. Perhaps if I worked in an environment that was more competitive or cutthroat, I wouldn’t say anything.

“You were so young,” she said to me, more than a few times. If I allow myself to think about that for too long, it makes me incredibly sad. There is an endless well of grief in that realization. The timing of it too, where I had started to come at life with openness and zest, only to have it all dashed and then to turn into isolation and intense guardedness during these years of inconclusive tests, is especially cruel.  I feel an overwhelming sense of loss.

Now that I don’t think about it as much anymore, when I do it is all utterly shocking to me. I don’t know what to do with that feeling; I thought I would be immune to it after thinking about virtually nothing but cancer and medical trauma for years. Doing so didn’t cause any of the horror to wear off and I thought it would, that perhaps thinking about it all of the time would mold it into a normal feature of my life.

Trauma just doesn’t work that way.

Inside, I Am Finally Still

In one of the dozens of books I have read about cancer, illness, and post-traumatic stress disorder over the last nine years, one of them said, to paraphrase,  “You will know when you have moved on because you will be tired of telling your own story.”

A couple of weeks ago, I was participating in the online discussion in the patient navigator course I was taking. We were discussing a time you perceived your doctor as good or bad, and why.  Everyone (I am not exaggerating) had beautiful stories about good physicians filled with care and humanity who took care of their parents or were trusted colleagues.  I threw a grenade into the waxing poetics and painted a portrait of ambivalence and mediocrity, using my current endocrinologist as my subject. It was met with the usual avalanche of careful “I’m sorrys” and all I could do was roll my eyes in response.

This. This was the moment I was promised would someday come to pass, by that sentence from a book I cannot remember, by Dr. Overinvolved when he said, “It will fade with time.”

Maybe Dr. meant a year, or three, or five.  But it took nine. NINE.

Let that sink in.

Nine years of seeking a resolution in books, in other people, in careers, in classes, through writing, in graduate degree applications, in fluid definitions of myself.  Each one of those pursuits counts as a layer, a connector, a marrying force in a quest for answers to questions I never fully defined.  I wasn’t looking to answer “Why me?”  I have very sound theories for that one. I was trying to unpack everything I have been carrying around: medical trauma; transference/counter-transference; the fine line between being friendly and being a creeper; the meaning behind serious life events; our obligation, or lack thereof, to share what was learned through our own experiences to help others; and cancer. Oh yeah, this discounted, yet life-changing disease we call thyroid cancer that promises we will be over tested for every other form of cancer for the rest of our lives; that guarantees we will be condescended to by physicians and others who do not understand how goddamn tired we are. Are you tired?  Because I am.

Now, as I write this, there is an unusual May thunderstorm descending on coastal Los Angeles where I have made my home for the last four years. The rain is perfect in its force, in its cause, and in its effect. A mile away the 405 has come to a complete stop.  No one asks, why does the rain make that noise when it hits the pavement, or why does that rain saturate my curls?  It’s rain. It’s water.  And we accept that without question and go about our day.

Escaping the Pull of the Undertow

Parts of me are shifting again. Last week, I was up for my usual 4:30am gym wake up call and thought about how when I was 13, my goal in life was to go to London. I have gone twice now and it was everything I thought it would be when I was 13. I thought to myself, “that’s one dream you had that you made come true.” For the first time in a recent memory, I felt like I had done something right in my life and I felt relief. I was not a blank slate drifting aimlessly through the years after all.  I had a real, heartfelt, passionate goal and had met it. Goals that were born entirely from me have been in short supply, hence my professional stagnation.

Later that day, I cried. I briefly thought about 28 year old me and how she/I didn’t deserve any of that. It just swelled up out of nowhere and I went along for the ride. I felt relief. As I slept later that night, I had a dream and I remembered having it. Upon waking and recalling this, I came upon the realization that I hadn’t remembered my dreams in years. My recall was fuzzy and not anything revelatory, but it was something important that had gone missing without my knowing it.

Since that morning last week, I have remembered my dreams multiple times now. I also cried again, but for no reason. I find this so encouraging, as if I have scaled a psychological wall and can feel again. I did some reading to find out if this is a PTSD “side effect” and found only anecdotal reports of people who remembered their dreams very well before the trauma and then lost that ability in the wake of their diagnosis. I know this was more a more recent phenomena for me. I had explicit recall of my PTSD nightmares as well as the happier dreams from that time.

Prompted to remember other types of dreams I had for myself, pre-cancer, I looked around at graduate programs in fun topics, like public history and museum studies. One program I was admitted to twice and I didn’t go, which was a blessing because that was when I became ill from Hashimoto’s Disease. This was 12-13 years ago now. I am perpetually disappointed in myself and how my professional life has turned out, but I took two major hits to my health in a short period of time, during the time in a healthy woman’s life cycle when she figures out what she wants, both career and personal life. I was too busy trying to feel and be a healthy person.  I read some old journal entries last night- cancer recorded in real time- and I talked about getting out of my career. Not coincidentally, today was my biopsy, nine years ago. It’s a state holiday, ensuring I will never forget it.

I thought space and time would help me get over this. I traded on the only thing I had- my career- to get away. To run. I don’t regret leaving everyone who didn’t support me, nor do I regret leaving Dr. Overinvolved, though I miss him so, but it truly WAS a self-preservation move. I didn’t trust him to hold the frame anymore even though I really wanted to because I needed him in my corner. In my old journals, the magic of being heard and seen and felt was positively blazing out of my words. I was so high off of the experience. But I didn’t trust the magic, either. It had to be an illusion, a shaky bond built on a rotting foundation. I’m not sure that it was. Perhaps I was wrong to run, simply due to the magic, because there’s been none since. Everyone, especially the train wreck PTSD cancer girl, needs magic in their lives.

My writing was so musical in those old journal entries; I recalled the letter I wrote to him about the trauma situation, a full two pages single spaced. I let myself fly on those pages. It was cathartic and authentically me, all by design. I let him see me, something I rarely do. I have always been someone to keep hidden (because of my fatness, because I was The Other Woman) and I know that there is an extremely short list of people who know me absolutely. He’s one of them. The man I met a year later who was one of the reasons I moved- he knew me. After that, no one knows me anymore.  Not even BFF Melinda. Recently, I’ve made it a point not to be known because being known resulted in my doctor being weird and sent a man who said he adored me running for the hills of Thousand Oaks as soon as it dawned on him I was real.

In my old journals, I saw a me who had no choice but to pick up weapons she scarcely knew how to use and fight.  And fight I did, often with success. Many of the events I wrote about I had simply forgotten. I miss having that kind of fire, and those kinds of battles to engage in. It’s no wonder I am so bored. My world was on fire and it was all up to me to fight it. The fight was not cancer itself, but against an inefficient, unsafe, paternalistic system I knew very little about at that time. Now I know how to shoot that arrow and drive that armored car, skills I would argue I make very little use of these days. Perhaps this is where my future lies.  I want to be in the ring with my gloves on (or off, for you hockey fans out there), not handing out the refreshments.

Skin & Nerves

Saturday I went running through town, down along the bike path, out to the pier and back.  When I returned, there was an angry red line on the edges of the nubby, knotty tissue that makes up my thyroidectomy scar, usually hidden in plain sight from all but the most adept and studious observers. It felt raw to the touch, like it had been rubbed and whittled down to lose all texture so as to match the surrounding smooth, pale skin once again.  I had lathered on the SPF 50 Sport all over my face and neck, plus I donned my wide-brim blue hat for insurance. So it couldn’t have been sunburn.

When I arrived at the pier, sweaty and famished, I stopped for iced coffee and a snack. Once inside the cafe, I removed my hat and let it hang down my back, the cord tight across the front of my neck. It was busier than usual, owing to a beach volleyball tournament going on below, and I must have spent 15 or 20 minutes inside, which combined with my intra-run sweat, must have rubbed the scar and created the burn. I never felt it. Instead, when I arrived home, I looked in the mirror and saw my private scar go public yet again, announcing itself with anger on the edges of my strap muscles.

I always see my scar when I look in the mirror. It does not matter if I am in a fitting room, at home, the gym, or in the bathroom. It is the first thing I see when I look at myself. My scar hurts. If I touch it and push on it, I physically recoil. I want to jump out of my skin and scream! I pat it dry, no rubbing, ever. The interventional radiologist wanted to put his biopsy needle through it seven years ago to gain access to a lymph node, and I refused to allow it.

When I initially acquired the scar, I put Mederma on it everyday,with the wish and the hope that it would disappear. The first time I saw my therapist after the surgery, she claimed to not be able to see it. She had been away in Australia for so long that I was biopsied, diagnosed, and operated on while she was away- nothing about me physically seemed amiss. Perhaps she was being polite, or was just clueless. Six months after my surgery, I was introduced to my new boss; she looked right at my scar and was not at all covert about it. I was taken aback but appreciated her honesty.

Owing to the excellent placement of the incision in the ring of my neck, my keeping it out of the sun, and perhaps my copious, daily use of Mederma, my scar all but disappeared from public sight. This was what I wanted. It was what I thought I wanted. To move on, “to get back to what you were doing before,” as Dr. Overinvolved said at the post-op, to make it fade so light and so far it would be just like it none of it ever happened at all.

I wish my scar was loud and obvious, announcing itself and my misfortune to the world. Then it would be a fleshy carved billboard that excuses my underachieving, my loneliness, my inertia to the outside word. It was the only physical manifestation of thyroid cancer my body would ever bear and it seemed I couldn’t even do that right.

The edges of my scar are peeling now, little bits of dead skin roll of it when I touch it, and it has faded from red and back to its mottled, nubby, knobby, touchy self. Sometimes I get a sharp pain on the far right edge of it. But it’s just a little kick, as opposed to the bold electric shocks I felt for the first year that would jolt my entire body into attention. This was the sensation of the nerves regenerating, according to my medical textbooks. My nerves, if you will, did not regenerate as everyone else wanted, nor did I “get back to what you were doing before.” Those nerves were tenuously reunited.  Every once in awhile enough electricity flows through them that I seem daring and brave, but inside I know the truth.