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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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.

 

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.

When the Patient With PTSD Tries to Schedule a Colonoscopy

This morning I decided it was time to woman up and schedule the colonoscopy I am supposed to have, in light of my family history, my cancer history, and my chronic GI issues.  I call the medical procedures unit and they look me up, locate the order, and repeat the order back to me: “Colonoscopy with Dr. Gastro, attended by anesthesiologist.” That’s right.  The scheduler tells me she does procedures one day a week and there might be a long wait unless she has a cancellation (false hope, that one).

Then he says her next available is early May.

Early. May.

It’s February.

I immediately spun out upon hearing the news and the following went through my mind:

*I get to spend three months wondering if I have cancer or not.

*I get to spend three months wondering if the anesthesia is going to work on me this time.

*I can’t leave my job for three months.

*I can’t make any plans after that date in case I have cancer and need surgery/chemotherapy.

So, after insisting this was much too long and there being no solution forthcoming, I said that if I had to wait this long, I wouldn’t be having a colonoscopy and that I will take my chances. I then ended the call while the scheduler was mid-sentence.

I was prepared to wait a month, six weeks. That’s standard. I don’t expect the sea to part and make way for me (though it would be nice), but May is unreasonable. It also SCREAMS, “You are not a priority and we don’t care,” which led to any sense of trust I forced myself to feel in order to get through the door in the first place (let alone try to schedule this) to completely disappear. Just like I pretend to trust them, they are supposed to pretend to care and that’s clearly just too high a demand for us all.

 

 

I Ran and I Ran. I’m Still Running Away.

Last week was the appointment I have been afraid of for two, almost three years. The specter of my medical trauma, my anesthesia awareness cast a long shadow over every minute, including the drive in, the parking, the check-in and the waiting. The defense of my mortality and humanity was already being deployed by my sub-conscious. I was irritable with everyone and everything I encountered. I slammed the door in the stairwell as hard as I could muster. I tried very hard to not be nasty with the humans who were obligated to interact with me, so I was short instead. It was the best I could do.

I was nicer when the gastroenterologist entered the room, like that matters. I told her about the issue, that it started during my last bout with hypothyroidism, which was caused by the Levoxyl recall, a sub-optimal dose of Synthroid, and an endocrinologist who refused to test my TSH after switching brands (they are not all the same). I told her about my cousin’s cancer. I eventually worked my way up to disclosing why I had put this appointment off for so long and my fear of having a colonoscopy. Dr. Gastro asked me what happened. She seemed alarmed and asked, “What hospital was this?”  Don’t worry, it wasn’t this one!

Dr. Gastro ordered a smorgasbord of tests, including a “recommended” colonoscopy that would be attended by an anesthesiologist, which means a likely drug combination of propofol and fentanyl. I was almost okay with this, until I had the ordered abdominal CT scan that required IV administration of contrast. Now I am less okay with it.

The CT scan took place late that same night during LA’s first major rainstorm of the season. The parking garage was closed for the night, so I was forced to park in the street and walk two blocks, maneuvering  gutters overflowing and overwhelmed by the steadily falling rain. I was so tired. I had already cried in the car, sobbed on the 405, then again at home. All I did all day was cry out of fear and fatigue and loneliness. I checked in and of course, on this night, there was a man in the waiting room lacking social graces. He played music on his cell phone, games, took phone calls, stretched and groaned, burped loudly. I wanted to tell him to shut the fuck up, then I wanted to punch him in his gross, unshaven face. Welcome to the Night Circus, I thought. His name was eventually called after forty-five minutes of grinding my teeth. I finished my barium drink. I wasn’t thinking about an IV as I hadn’t been explicitly told I was getting one. But I knew both types of contrast are used for abdominal CTs. It didn’t occur to me that this might be a trigger.

To bystanders, I handled it wonderfully. But in reality, I hung on to that appearance of normalcy by the tips of my ragged fingernails. The placement of it didn’t bother me. I didn’t look at it. It hurt, as they do. It hurt as the rad tech taped it down. It hurt when I put my arms over my head. Then the panic swooped in and grabbed me by the throat as soon as I felt the contrast hit my veins and that warm feeling swept over my body. Feelings of terrified helplessness reverberated through me. The thought, what if they kill me? went through my head. I felt like I was choking. Tears. I bit my lip. I had heart palpitations. I tried to give myself a pep talk in my head, just hold on. It was over quickly. I felt shaky as the tech had my sit up. He asked if I was okay and I simply said that the contrast caused a choking sensation. He mentioned that happens sometimes and commented on my looking away from my arm with the IV. I mentioned I’d had a bad experience in the past with general anesthesia.  I told my story for the second time that day, watching the shock register on his face, his eyes big.

This reminded me of the moments before my surgery. I had a gut feeling something was wrong when I met the anesthesiologist, but I didn’t act on it. I thought about the sensation of that first wave of benzos hitting my bloodstream, followed by the sensation of my consciousness slipping away, my eyes again filling with tears, and then waking up to horror and this massive rupture that has existed in my world ever since.

As it turns out, the CT didn’t show anything pathological and Dr. Gastro continues to recommend I have the colonoscopy. I have other lab tests to complete and if all that turns up fine, then I will likely schedule it. I guess. I will need to send a message to Dr. Gastro about IV drugs being a trigger so she knows ahead of time. I’m trying to find the balance between protecting myself emotionally and performing due diligence on this body. It would be incredibly reckless for me not to do this, given my history and now the family history. I’m just tired. So tired of trying to keep myself in check all of the time and grappling with this nearly every time I seek medical care.

This also prompts me to question my own story, the plot lines that I tell myself. I do not like my story thus far. I don’t want my health problems and PTSD to be my central storyline. I find myself angry more often than not. I want to leave this place better than I found out, to be loving, to be open. Sometimes I am able to chill, give people the benefit of the doubt, smile at the person who is in my way, but it never lasts before I swing back the other way. I cannot help but think of my upbringing, the coldness of both my parents, the lack of affection, and I see where my frozen core comes from. It’s also why I am alone. I need to start an outline that will change my story.

via Daily Prompt: Moody