The Patient With PTSD Tries Again to Schedule a Colonoscopy

In light of the major press coverage about the rising rate of colorectal cancer in people under 50, as well as shudder-inducing recollections of what passed as “food” in my childhood home, my sense of self-preservation prevailed and I called yet again to try to have a colonoscopy scheduled. I was mentally prepared this time. I did not expect the wait time to improve. In fact, the wait has lengthened considerably. My GI is now scheduling after Independence Day. I asked if another GI could do it or if I could be added to a cancellation list.  The lovely person who assisted me said she would send a message about it to my GI, but not before she chided me for calling to schedule a procedure in March that was approved in December. I had my reasons. I needed to wait for all the other test results to come back. I added that I tried to schedule it previously, but was so shocked and frustrated by the obscene wait time that I had simply ended the call.

The next day, I received a call from my GI’s office asking me if I could do it in four days. I had 30 minutes to figure it out. I could not find someone to drive me on such short notice, so no, I could not. She also said it might be possible on another date and I managed to find a ride for that date- a man I hardly know at all- but then they couldn’t make it work. So I remain on the cancellation list and am officially scheduled for July- four months from now.

What prompted the GI’s office to call me, I don’t know. Maybe she looked me up and remembered which train wreck I was, exactly. “Oh yes, the anesthesia awareness PTSD person with a cancer history and a cousin with stage III colorectal cancer.”

My PTSD isn’t as severe as many cases are. I can get in the door, thanks to Dr. Overinvolved, but I usually unravel after I walk in, my undoing the result of hyperawareness and irritability. This is different. There’s a part of me that wants to overcome this, that wants to have another experience with anesthesia, but a good one this time, and the result of that will help. I do not react well to having an IV, as I learned from December’s CT scan. I will tolerate severe pain if I have to, but it will trigger me and result in nightmares and sleep disturbance, as I learned from a saline ultrasound I had of my uterus two years.  I want to defeat this. I want to win.  

The fact I feel this way at all is a good sign that I still have some resiliency left in me after all. I often feel so resigned to the status quo, not just with the current effects of my PTSD, but all the elements of my life. I lost my sparkle and my drive to become someone who is at the heart of it all, intensely angry and frightened of life.

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.

A Perfect Cancer Television Moment

I am in the midst of a re-watch of Rescue Me, a show I have struggled with since my initial diagnosis and treatment, no thanks to PTSD. But I have been able to watch this time, and I am in the middle of season six. Kelly, a one time romantic interest of Tommy’s, has resurfaced with breast cancer and she has just received the good word from her doctor. She is baking brownies.

Tommy: Do I say congratulations?

Kelly: Yeah, ‘you won’ that’s what my doctor told me.

Tommy: That’s great

Kelly: Yeah I’m really…happy.  I dunno happy is a dumb word. But I am happy…I don’t know what I am.

Tommy: Relieved.

Kelly: Yes, I’m relieved.

Kelly then burns the brownies and and starts shouting expletives and throwing things and breaking things in the kitchen.

Kelly: It’s not about the brownies!

Tommy: But your doctor…

Kelly: The doctor said I won, but I don’t feel like I won anything!  I was going to be this kickass cancer patient, and I was, and I did everything they told me to do, everyday. And then this guy, this doctor says, ‘Alright you’re good to go. You’re all set!’  What am I supposed to do?! Find the secret in life?!  Go to India?! Find Jesus?!

*Lies down on the floor, Tommy is perplexed*

Kelly:  …I wish I had a real boyfriend to do this with. (RIGHT?!)

Then, the cherry on top of a this sundae that has my name on it:

Kelly: I don’t want to spend the next 10 years just twisting in the wind trying to figure out all of this anger, grief…

What Kelly doesn’t want is exactly what I have been doing for the last 8 years 11 months and 18 days. Little progress has been made. I’ve just had the good sense to not drag too many other people (husband/boyfriend/hypothetical children) into it.  There is no answer. There is no resolution. It just is. All of it and everyone involved. It is the unsolvable puzzle that is taking up all the space on my dining room table. The years are going by while I stare at this incomplete puzzle, knowing that I don’t have all the pieces in the box anyway, and they were never mine to have, expecting them to just materialize if I stare at it long enough. The lines on my face and my grey hairs are all that is materializing while I stare at this unsolvable puzzle.

 

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