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.

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.

 

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.