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. 

 

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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.

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.

*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

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.