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.

 

 

*Shrug*

News vans lined the street as I drove up to the hospital. A major strike was being held by the Teamsters.  A 12.5% immediate raise was not enough, apparently. I was there to undergo annual thyroid cancer follow-up testing: blood and ultrasound.  I have been concerned about my one good vein, as this was my third blood draw in a month and an IV was placed there as well.  My GI problems prompted much investigation and I am still holding out on the Big Kahuna- the colonoscopy. I will probably not do it, as all of my tests came up normal.

My good vein held out just fine and the neck ultrasound was quick and dirty. I don’t think the tech even measured any lymph nodes.  I felt a heavy feeling of indifference as I walked out. This is not going to do anything to my life if it’s bad. It was already ruined when I was young and bright-eyed, with my whole life ahead of me.  A lot less of me is ahead now, and I am not young, nor bright-eyed anymore.

The same indifference accompanied me to the endocrinology appointment. All of my blood work is exactly the same, both USC’s and Beckman-Coulter’s assays show the same low TgAb and barely-there Tg that has been present for the last six and a half years. She told me to come back in six months. Instead of checking out and scheduling the follow-up appointment, I inadvertently slipped out an exit door that put me right in the middle of the head & neck surgery clinic. I only realized my mistake when I was back at work. I told myself I would call later.

It’s been a month.  I have not scheduled the follow up appointment. This is bad because my endocrinologist only sees patients once a week. The longer I wait, the more likely this will turn into a seven, eight, or nine-month follow up appointment. I just don’t care enough to schedule it. Maybe I won’t even be in LA anymore in six, seven, eight, nine months.

It’s accurate to say that I have found peace with my current state of “We can’t say you are NED but it’s probably nothing.”  Now I need to come to terms with all of the time and years I have wasted living from a place of fear,  extract myself from it and try to live from a different place.

Many of my posts end with me trying to tackle this same, essential question of “Who I am and why am I here?” I’m not sure I am any closer to answering those questions, though this was a dilemma pre-cancer as well. I have been led to believe that a person who knows who they are and why they are here while young is fortunate. But I was that person. Unlike Rene Descartes, I didn’t need to spend nights writing by candlelight to dissect my core values and beliefs. They were blown up by circumstances outside of my control and continued to be twisted and scattered as the years plodded on. A lightening strike that fuses it all back together again in an altered, glassy form would be appreciated right about now, would have been appreciated five years ago.

Nine

As 2017 dawned, I started and abandoned multiple writings. I reflected on forgetting my lessons, knowing I have everything I need inside, and vowing to tune back into those lessons to get back to a place where I am honoring myself. In another I touched on the recent estrangement from my family and how they are not, and will never be “my people.”  Most recently, I tried to write about the heavy weight of indifference I felt going in for my year nine follow up testing (results pending). None of them stuck.

Delete. Delete. Delete.

So, what I can tell you tonight is that my life right now is not working for me anymore. Everything feels forced and just slightly off-kilter: where I live, my work life (all of it- the people, the institution, the work itself), the gym.

There are lessons I have forgotten, strands of narrative that fell away.

Dr. Overinvolved, for all his faults, taught me that I am worthy of support, comfort and understanding.  He showed me that my experiences, thoughts, and feelings are all valid. He urged me not to sell myself short.  When I miss him, as I have again the last couple of weeks, it’s because I miss having this all communicated to me.  It never was before. In fact, I was taught the opposite. Having cancer is hard enough. It’s much harder when your family of origin never taught you or modeled a shred of self-worth.

You have often read many thoughts from a person who isn’t sure her thoughts, feelings, or experiences are valid, or that she herself is worthy of…anything. They are.  I am.

The indifference I have towards my follow-up is very real. I went in there and it was old hat, like I was back in the Hashimoto’s era. I keep checking MyChart for the results anyway, just to get that confirmation. So much of my prior anxiety was rooted in superstition; I felt great and had no concerns the day this saga began. I’ve been afraid to feel great, or confident, ever since.

So, what do I want?  I want to explore.  I want to be out in the world, not hidden, bored, unstimulated and rotting away in an office while my intestines freeze up from the stress of being surrounded by stupid.  But…how do I do this in a way that I am (somewhat) comfortable with?  As much as I want to just get up and leave the job and the apartment, I know that is not the answer. Stay tuned.

 

 

 

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

Midwinter Graces

December, such as it is in Southern California, is a minefield of hazy, dreamy, tainted memories and a sense of my hope and potential being lost. It was early in December 2009 when I underwent radioactive iodine treatment. It was the last time I ever saw Dr. Overinvolved. I was so happy. I was barely 30 years old and I had, in my mind, this wonderful doctor at my side who wanted to protect me, was reliable, and thought I was special. I had this other man in my life, though far away, who adored me, who made me feel good, made me laugh, who cared about me. I had colleagues I genuinely liked who genuinely liked me. The future seemed bright. I had completed treatment. I was young, bright, and full of energy.

Tori Amos had just released a seasonal album of reworked standards and hymns , part Christmas, part winter solstice, and I listened non-stop. Candle: Coventry Carol, invoked a dark sense of safety with threat lurking under the surface. The song itself harkens back to the Massacre of the Innocents from the Gospel of Matthew. Traditionally sung by the mothers of the lost male infants, I always felt myself physically entwined in a complicated slow dance, hands clasped, movements deliberate and lingering. Star of Wonder was the soaring of my heart at all of these men bringing me to life. Finally, I had their approval. I was real. I was good enough. As the lyrics go, “Some say we have been in exile. What we need is solar fire.” I was no longer in exile. I was allowed to come home, into the minds and fantasies and lives of these men. Reborn. The Tori version refers to Three Kings, and the third, well, would be the original misogynist at the root of my story: my father, who hated me, abused me and ignored me until I became pretty.

Every December I take out the Midwinter Graces CD and play it nonstop in my car, driving around with a grin, my mind filled with those dreamy, shadowy recollections of that month in 2009. Today, as I repeated the ritual for a sixth year, I realized this was not a happy activity. That the dreamy memories were tainted and that hazy state where I am consumed by memories of being in the basement of the clinic with Dr. Overinvolved was a trauma response, not an enjoyable, fond trip down memory lane.

It was on the back of this revelation that I finally understood the only thing keeping me grounded was my cancer, my permanent reliance on prescription medicine, my non-negotiable need for health insurance. The straight life, as I call it, where I go to work each day in an office and reduce every possible risk to my financial life, has made me so risk adverse and anxiety-ridden, even a day trip to a museum fifteen miles away feels like an overwhelming undertaking. I engage in an endless debate with myself as to whether I should go or not, and I never do, once the debate starts. I did not used to be this way. I fantasize about not being this way; about getting out of here and going everywhere and doing everything. Specifically, writing for a living, making jewelry for a living, baking for a living, being able to go hike or workout whenever I want, living abroad and overall, living a life that doesn’t revolve around what time I have to install myself at a grey metal desk in a grey office with no windows. I feel stifled, held down, and trapped, which I know is something I say over and over again. Nothing will change. I only know how to follow the rules.

via Daily Prompt: Conundrum

The Branch That Broke off the Family Tree

My contact with extended family has been sporadic throughout my lifetime. There was the visit from my cousins that I am too young to remember; my aunt and uncle visiting when I was six, and my grandparents when I was eight. There were the trips to Michigan when I was ten and another when I was eleven.  I know nothing about my paternal grandmother, not even her name.  She left an abusive man and young kids behind to live her own life. I know more about the history of the maternal side. There are no biologically related cousins so as far as the present, it is a genetic dead end for my medical file. My paternal cousins, on the other hand, are female and numerous.

The contact with the family diminished after that last trip to Michigan. I briefly corresponded with a couple of my cousins on MySpace and my father talks to his sisters a couple of times each year.  Other than that, silence.

I am the only one that’s had cancer. It’s never made sense to me that I was an outlier; it seemed it had to have come from somewhere. But given my extensive history as the family black sheep, it shouldn’t be so surprising to me. BRAF testing wasn’t done when I was originally diagnosed with thyroid cancer and there’s been no reason for me to undergo any genetic testing in the years since. So when I had my annual check-up last week, I gave my usual response when asked about family history of cancer, “Just me.”

That night, I logged onto Facebook and snooped on one of my cousin’s profiles. A few months back, there was a mention on a post about her undergoing chemotherapy. Since chemotherapy is often used as a treatment for other diseases, like lupus, and she had all of her hair in the photo, I brushed it off in the absence of any other evidence. This time there was evidence. She has been undergoing treatment for metastatic colorectal cancer, diagnosed nearly a year ago at age 40. As third-degree relatives, we share 1/8 of the same genes. I am a redhead. So is this cousin. We are the only offspring that have red hair. We are also now the only offspring to have cancer. Fantastic.

I am concerned. One of the reasons for my check-up last week was to get a referral to a gastroenterologist. I have chronic issues, some of which show up as symptoms of this cancer, and have been putting this off for two years. I had a referral at least once before and never went. The thought of undergoing a colonoscopy, which I am certain is in my very near future thanks to this new discovery, terrifies me. In order to keep costs low and profits high, Versed is the drug of choice, along with a token dose of painkillers. Versed gives patients amnesia. It’s not a painkiller. I am 100% NOT on board with putting my body into the hands of these people. I do not trust them to do anything right, or humane, when I am not taking copious notes with my eyes. I have an appointment with the gastro in two weeks. I’m going to have to grit my teeth and get through this on my own. My attempts at explaining why I have PTSD have not been met with open arms by the physicians at UCLA. I haven’t told anyone about my cousin. But there’s no way out of this now and I’d rather risk more trauma than not know I have  treatable cancer until it becomes untreatable.

The People You Meet

Fridays now mark another week since Melinda’s husband died. It has been a month. Next weekend she and his family are going to spread his ashes in the Pacific.

I have spent more time with her in the last month than we’ve spent together in the last two or three years combined. It’s been hard for the obvious reasons, though we have also shared many laughs together. She and her husband had lived in that house for nearly six years and the two instances over the last month where I have stayed the night were the only times I did so. This is something I regret. All of my excuses for not doing so, not going out there more, are so stupid. I’m tired, it’s too far, traffic sucks, I’m enjoying stewing in my own misery. Stupid, stupid, stupid. Pointless, not real excuses, just bullshit. We didn’t see eye to eye on a number of things but he loved her; he treated her well and was a genuine, very funny guy. I should have spent more time with the both of them. Should have, should have, should have.

Last weekend was the memorial. It didn’t feel like one and I think that was the point.  I wish it had been a “real” funeral with a eulogy and an electronic organ because I needed the emotional release. We went to a park. She brought his ashes in a wooden box and every time I looked at it, I couldn’t believe he was in there. Melinda asked me, “Should I bring him?”

My counterpart, the other best friend, was so drunk he had to be driven back to the house. I suspect he may have been taking Xanax as well. I returned to the house early myself to lay down as I was completely drained, and found him passed out in the guest room where he had slid halfway off the bed and onto the floor. Prior to his consumption of half a bottle of whiskey, we talked extensively for the first time. We had met before, of course, but this was the only time we had reason to talk at length.

“I think he was tired of being responsible.  All his life, he had been the responsible one in his family.  He sent me that weird text a couple of weeks before he died.”

“He was supposed to go to my funeral. That was what I always imagined.”

“I should not be here. I should have died that night.”

“If you want to do something, do it. Whether that’s writing, making jewelry again, do it.”

“Instead of finding ten reasons not to do something, you should find ten reasons to do something.”

“You worry too much. You should worry less. I should probably worry more.”

The Other Best Friend, who takes photos of hot women for a living, figured me out in about two seconds and called me out. Impressive. He survived a ruptured aorta in a DUI car accident where he was the passenger.  It was a number of years ago now; I remember when it occurred and his survival was a question mark at the time. The more we talked, the more I recognized shades of survivor guilt and PTSD. Every time he stepped into my car, he did not want to put on the seat belt. He was wearing it when he was in the accident and it caused his ruptured aorta. Each time, “This is what nearly killed me!” I felt guilty pushing him to put it on anyway. When he was my passenger I drove very carefully, like he was bad luck.

Melinda did not like it when I drove him two blocks to the market and said that us together, “makes me very nervous.” I thought that perhaps she thinks he’s bad luck too, or, that the cancer survivor and the man who cheated death are just asking for trouble by sharing force fields. But she later told me he may have caused the accident himself by grabbing the steering wheel. That’s what the driver said happened. This exact thought crossed my mind at the time, but I wrote it off as my catastrophizing the situation. Clearly my instinct that he might be someone who would do something like that was accurate.

When I told him I’d had cancer, he didn’t say anything. He stared at me from across the dining room table.

“You had cancer?” he asked, as if he were checking to make sure he heard that correctly. I told him the abridged version of the story; I left out my own trauma and of course, Dr. Overinvolved. I mentioned that Melinda took me to my surgery; she was also the first person I called after I found out. He asked me multiple times if I was okay now, how many years it had been.  I skipped the vagaries of the tumor marker situation and told him that I am okay.  I believed it when I said it.  He asked me if it made me want to seize the day, to do everything, and of course it did not. It made me afraid of everything instead.

Being reckless, as he is, is not about “doing everything.” I need to find ten reasons to do something instead of ten reasons not to, but not because I have the same motivation. The Other Best Friend, because of his behavior, has more reason to think “this day might be my last” than I do, as did Melinda’s husband, who had ridden his bike home drunk before. I do not say that lightly, believe me. My takeaway from this conversation is that he is right; I should worry less.