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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Home.

I went home last weekend to be with Melinda for the first anniversary of her husband’s death. Those 24 hours turned out to be about so much more than that.

Where I thought there would be tears, there was alcohol. As I lay in Melinda’s former marriage bed, now exiled to the guest room, I listen to her repeatedly throwing up. Later, she tells me she passed out on the bathroom floor. I wondered why the bathroom fan ran for so long. I am stone cold sober.

Meanwhile, her sister in law is audibly moaning in the living room, as she is drunkenly hooking up with a man who claims to have been a friend of her brother’s. I doubt the veracity of his story as any man who really was friends with her brother would not be having sex with her right now. The next morning, she will say she has no recollection of being with him. I recognize the extremely problematic nature of this entire situation, seeing as she was clearly blitzed at the bar and not able to consent. I do not say anything, as she isn’t enlightened about these matters to the extent I am and I don’t believe it’s my place to say anything now.

It’s 7:30am and I am the only one up. I get dressed and get in my car, driving to the nearest Starbucks. I want to return to Los Angeles right now. But Melinda is actually sleeping, and I don’t want to wake her, nor leave without saying good-bye. I am in Carlsbad. It’s cookie cutter gross, the rolling coastal hills packed to the gills with stucco tract housing that surely costs seven figures. My skin crawls. I feel claustrophobic. I take my time returning to the apartment. I decide to leave at 10am if Melinda is awake. She is, but then I feel guilty just running off so we hang out in her room and talk.  I wait until 10:45am, then I make my move.

“Traffic will get even worse if I wait much longer,” I say.  Pulling the traffic card always works when you are an Angeleno. She doesn’t resist. Her sister-in-law is throwing up in the bathroom while we talk. Melinda herself is hungover, her eyes drooping.  She walks me out, we embrace and I cannot get out of there fast enough.

“I was a rebellious asshole! And you were always so nice! I’m sorry I was so mean.” I am in the bar with Tracy, someone I have known since middle school. She bullied me. Now she is a dissatisfied mother of three, holding her beer in one hand while yelling at me about her alcoholic mother and how mean she was Back in the Day. I’m nodding. I’m not really enjoying her mea culpa; this is not something I think about all that much anymore.  What I am thinking about it is a night out in Hillcrest over ten years ago, where I am the designated driver and at the end of the night, my Honda is filled with people from my high school graduating class.

Nothing has changed. It’s like any other night out with Melinda when I lived there. We are older and that’s about it. It’s 12:30am. If my bag were in my car, I would drive the 90 minutes home right now.

Earlier…

“Come home! Come home you cunt!” Jena is yelling at me, her hands on my shoulders. “We’re your family and we’re here! I know you aren’t happy!” She’s not wrong, but I have no desire to go back to the future. That’s been made clear.

Two days later, I am sitting in traffic on the north 110 on my way to a job interview at an academic medical center. I look on the horizon and I see my San Gabriel Mountains, the downtown LA skyline, the faint outline of the Hollywood sign. I relax. I am home. 

 

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.

 

Brush

So many times in this life we stand at a crossroads and years later, can trace the consequences of the direction we chose back to the present day. I had a choice to have a colonoscopy, or to not have one, based on a vague change in bowel habits that persisted for a few years. Despite my fears, I decided to do it. I might have saved my own life by making that choice. Of the two polyps that were found and removed, the largest one,  5mm, was pre-malignant.  Standard screening age is 50. I’m 37.

To say I am spinning out over this would be a massive understatement. I found out the day before I left for a great vacation. The pathology was released to me, at my request, through the EMR. No interpretation or recommendation came with it. The official channel is to send a letter through the U.S. mail two-three weeks after the procedure. I emphasized this because, to be blunt, it’s a thoughtless and outdated practice. I told my GI this, after letting her know it was released to me in this fashion and she implied it was my fault for asking it to be posted to the EMR.  I had to google “sessile serrated adenoma.”

The recommendation is for a colonoscopy every three years. I want genetic testing, and I want it now.  No more surprises.  There are huge holes in the family history. I don’t even know my paternal grandmother’s name, let alone her medical history. My so-called “mother” doesn’t believe in getting medical care, so she’s a useless source of medical history.

Speaking of my “mother,” I never told her I was having this done after she told me not to do it. So I told her after the fact and about the pre-cancer. Then she made a terrible joke about it. I am truly Nobody’s Daughter. I have no one to go to for comfort. It’s a terrible feeling.

Of course my thoughts turn to Dr. Overinvolved at a time like this, but thinking I can go to him for comfort is just a myth my brain likes to run with based on that tiny moment in  time. There are hundreds of me’s and just one of him; he wouldn’t help me in the present, or even remember me.

A few months ago I felt a lump in my left breast. I have not seen a doctor about it. I keep thinking it’s going to go away, but it’s still there and I don’t feel anything like it on the right side.

My vigilance and commitment to my self-preservation is laughable, really.  There’s not a lot of enjoyment in my life. There’s no love, no sense of purpose. No one needs me. In addition to being nobody’s daughter, I am no one’s mom, no one’s wife, no one’s girlfriend, no one’s mistress…  No matter what I do, something will get me, like it does all of us, eventually. Why get in the way of nature? That is honestly how I feel right now. I am invisible and irrelevant.

I was much happier last week when I was on the road. I followed a band I love, and have loved for twenty-five years, to every show they did for a week. It was glorious. Each day, I would find my way to the next city, sometimes I drove, sometimes I wandered airport terminals, then I would check in to my hotel and go to the show. That’s all I had to do. It made me happy. Very little does, which was why I chose to do it.

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.