Outing Myself

My department is going through a period of expansion, so every couple of weeks I have a new colleague. I am long past the point in my recovery/survival where I need to talk about cancer all of the time, thankfully.  So I go through introductory meetings, pretending like I am just a normal aging career woman without a husband or children to tend to, talking about the work that I am more and more burnt out on with each passing day, pretending like it’s really great and I love it.

There’s lots of pretending going on, overall.

A couple of weeks ago, one of my new colleagues said she was going to San Diego to be with her mom who was being treated for cancer where I was treated.  I thought I did very well, grinding my teeth, clenching my jaw and nodding and wishing her mom the best while chanting in my head, “Don’t say anything don’t say anything don’t say anything don’t say anything.”  But even hearing about That Place had a trigger effect. Cancer and the anesthesia incident were all I thought about the rest of the day.

Then it came up again today, when someone asked how her mom was doing. She said they are unhappy with the care she received, that first they said there was nothing they could do and then they miraculously had a chemotherapy to try. She mentioned a resident was running the show.

Cue the teeth grinding, but for slightly different reasons this time. My colleagues dispersed and I put on my best social worker hat, asking her if she had obtained a second opinion. She said they hadn’t and I said going across town might be an option  (memories of Dr. Second Opinion), especially since it sounded like there were reservations about the care her mom is getting at That Place.  Then I outed myself. I said that I was treated for a different kind of cancer at the same place and it was not a good experience. My story tumbled out in globs and drips like a Pollock painting. I managed to fit in there the time I pursued a second opinion and how much peace of mind it gave me, after so many years of questions and inconclusive test results.  I wished I had done it sooner. She thought this all sounded like a really good idea and she’d see if her mom was interested.

I’m happy to out myself if it has the potential to help someone else. Our healthcare system is so complex that informal crowdsourcing is the best way to learn about our options. I have few worries about being treated differently as a consequence. Perhaps if I worked in an environment that was more competitive or cutthroat, I wouldn’t say anything.

“You were so young,” she said to me, more than a few times. If I allow myself to think about that for too long, it makes me incredibly sad. There is an endless well of grief in that realization. The timing of it too, where I had started to come at life with openness and zest, only to have it all dashed and then to turn into isolation and intense guardedness during these years of inconclusive tests, is especially cruel.  I feel an overwhelming sense of loss.

Now that I don’t think about it as much anymore, when I do it is all utterly shocking to me. I don’t know what to do with that feeling; I thought I would be immune to it after thinking about virtually nothing but cancer and medical trauma for years. Doing so didn’t cause any of the horror to wear off and I thought it would, that perhaps thinking about it all of the time would mold it into a normal feature of my life.

Trauma just doesn’t work that way.

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.

…and who are you supposed to be?

I am on a rocky road right now, and not the good kind with marshmallows and nuts. Yesterday when I retrieved my mail, I discovered an invitation to a research study on fertility in young female cancer survivors. Since my ovaries have been borked (a very technical term) since my radiation treatment, I read on with interest.  The invitation was from the academic medical center where I saw Dr. Second Opinion last year, but the letter says my information was obtained from the California Cancer Registry. I am aware of the registry, but thought it only contained demographic information that was not linked to my name. I was wrong about that. I went on the website and read that when I was diagnosed with cancer, I should have been given information about the registry. I didn’t exactly get a “Welcome New Cancer Patient!” packet from the folks in endocrinology, with all of the downplaying and psychological gamesmanship that occurred.

I sign up for every research study I am eligible for. This was no exception. I just wasn’t prepared to feel so awful after completing the questionnaire. I think I am 15 years older than the women they used for their stock photos; I am invisible to men and haven’t had sex in three years.  I am also OLD to the reproductive world. My favorite part was when it asked for the name of my oncologist. I looked at the people on staff of this study, and again, it was all very young looking people with MPH degrees from one of the universities that rejected me last year. None of them knew that not all cancer patients have oncologists. Yet, because my GRE math score wasn’t a certain number, I wasn’t good enough to have an opportunity to earn this degree.  I have also applied numerous times to work as a patient navigator at this institution and I cannot even get an interview. I thought the letter was a job rejection when I first saw it in my mailbox.

I cried last night, then again this morning, hunched up on the floor sobbing.  I’m old, no one loves me, and I have done nothing of meaning over the last nine years.  I am an intellectual person; information gathering is how I deal with everything. I never met a problem I didn’t think I could read my way out of.  This has been the sole exception.  There’s no book about what happens to a young women in her late 20s who is already undergoing a shift in who she is and who then has this massive chasm rip her life apart. I’ve tried to close it, build a bridge across it, find a way around it and I am still here, looking out over that chasm.  I had no solid footing in the world to return to. I was trying to figure that out and create it when this happened. I kept trying to create it and failed. My career isn’t it, but it was the closest thing I had to that at the time so I have hung on for dear life. It’s the only constant. The man who left me when I moved to LA wasn’t it, though losing him was a huge loss for me. Earning an MSW or an MPH by embracing the chasm wasn’t it.

I have no idea who I am, but I know cancer is not part of it.

Starting today, I am giving up using my cancer experience as a way to find my footing in the world. I am getting rid of all my books. I will finish my current patient navigator course only because I have already paid for it, but I am not taking anymore. There will be no further applications to MSW or MPH programs. I will not apply to anymore navigator positions, or hospital positions in general. I’ve applied for 15 in the last few months and not had one interview. None of this is working and I am not investing any more time in it.

There are some things that I know are central to me: writing, London, seeing more of Europe, reading, hiking, being active, going to concerts (there are so many shows I want to see this summer).  I always wanted to study in Europe and I am interested in history, cultural heritage, museum studies, and public history. If I am to get more education, that’s where it will go.

No more health, cancer or activism. It’s made me miserable, so I am purging as much of it from my life as I realistically can.

 

Escaping the Pull of the Undertow

Parts of me are shifting again. Last week, I was up for my usual 4:30am gym wake up call and thought about how when I was 13, my goal in life was to go to London. I have gone twice now and it was everything I thought it would be when I was 13. I thought to myself, “that’s one dream you had that you made come true.” For the first time in a recent memory, I felt like I had done something right in my life and I felt relief. I was not a blank slate drifting aimlessly through the years after all.  I had a real, heartfelt, passionate goal and had met it. Goals that were born entirely from me have been in short supply, hence my professional stagnation.

Later that day, I cried. I briefly thought about 28 year old me and how she/I didn’t deserve any of that. It just swelled up out of nowhere and I went along for the ride. I felt relief. As I slept later that night, I had a dream and I remembered having it. Upon waking and recalling this, I came upon the realization that I hadn’t remembered my dreams in years. My recall was fuzzy and not anything revelatory, but it was something important that had gone missing without my knowing it.

Since that morning last week, I have remembered my dreams multiple times now. I also cried again, but for no reason. I find this so encouraging, as if I have scaled a psychological wall and can feel again. I did some reading to find out if this is a PTSD “side effect” and found only anecdotal reports of people who remembered their dreams very well before the trauma and then lost that ability in the wake of their diagnosis. I know this was more a more recent phenomena for me. I had explicit recall of my PTSD nightmares as well as the happier dreams from that time.

Prompted to remember other types of dreams I had for myself, pre-cancer, I looked around at graduate programs in fun topics, like public history and museum studies. One program I was admitted to twice and I didn’t go, which was a blessing because that was when I became ill from Hashimoto’s Disease. This was 12-13 years ago now. I am perpetually disappointed in myself and how my professional life has turned out, but I took two major hits to my health in a short period of time, during the time in a healthy woman’s life cycle when she figures out what she wants, both career and personal life. I was too busy trying to feel and be a healthy person.  I read some old journal entries last night- cancer recorded in real time- and I talked about getting out of my career. Not coincidentally, today was my biopsy, nine years ago. It’s a state holiday, ensuring I will never forget it.

I thought space and time would help me get over this. I traded on the only thing I had- my career- to get away. To run. I don’t regret leaving everyone who didn’t support me, nor do I regret leaving Dr. Overinvolved, though I miss him so, but it truly WAS a self-preservation move. I didn’t trust him to hold the frame anymore even though I really wanted to because I needed him in my corner. In my old journals, the magic of being heard and seen and felt was positively blazing out of my words. I was so high off of the experience. But I didn’t trust the magic, either. It had to be an illusion, a shaky bond built on a rotting foundation. I’m not sure that it was. Perhaps I was wrong to run, simply due to the magic, because there’s been none since. Everyone, especially the train wreck PTSD cancer girl, needs magic in their lives.

My writing was so musical in those old journal entries; I recalled the letter I wrote to him about the trauma situation, a full two pages single spaced. I let myself fly on those pages. It was cathartic and authentically me, all by design. I let him see me, something I rarely do. I have always been someone to keep hidden (because of my fatness, because I was The Other Woman) and I know that there is an extremely short list of people who know me absolutely. He’s one of them. The man I met a year later who was one of the reasons I moved- he knew me. After that, no one knows me anymore.  Not even BFF Melinda. Recently, I’ve made it a point not to be known because being known resulted in my doctor being weird and sent a man who said he adored me running for the hills of Thousand Oaks as soon as it dawned on him I was real.

In my old journals, I saw a me who had no choice but to pick up weapons she scarcely knew how to use and fight.  And fight I did, often with success. Many of the events I wrote about I had simply forgotten. I miss having that kind of fire, and those kinds of battles to engage in. It’s no wonder I am so bored. My world was on fire and it was all up to me to fight it. The fight was not cancer itself, but against an inefficient, unsafe, paternalistic system I knew very little about at that time. Now I know how to shoot that arrow and drive that armored car, skills I would argue I make very little use of these days. Perhaps this is where my future lies.  I want to be in the ring with my gloves on (or off, for you hockey fans out there), not handing out the refreshments.

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.