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.

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.

 

 

Wally the Whale & A Second Opinion

Southern California has a problem. The rotting corpse of Wally the whale keeps washing ashore up and down the coast.  Wally first landed in Playa del Rey on July 1 and after coming ashore five times in Orange County, made her (yes, Wally is a female whale) debut in San Diego County on Grandview Beach in Encinitas on July 16.

So what does this have to do with thyroid cancer? Oh so much.

Over the last six years, I have tried to tow my cancer and all related experiences far enough out to sea that it would drift away and become part of the past. But that has never happened. Every six months or every three months it comes back around when I have those labs done and I see those tumor markers numbers I should not have…and nothing happens. It never goes away and I need it to go away. That’s why I put all that work into obtaining a second opinion.

The medical portion of the second opinion is not all that different than what’s been happening. This endocrinologist says he would not have done anything differently, however, he believes the three months follow up is not all that necessary for someone with such a favorable pathology report. He also performed his own ultrasound, an aspect of my follow-up that has been missing from my care since I moved away from Dr. Overinvolved. I did not realize how comforting it was to have the physician looking at and interpreting those images in front of me until it no longer happened.

There has simply been too much for me to question over the years.

The non-medical portion of the second opinion illustrated exactly why I needed one in the first place. None of the three endocrinologists I have consulted with since I moved have talked to me like an intelligent person. They have not explained anything. I read all the literature on my cancer; I can get in the weeds and that’s by design because I like to partner with my physicians. The only dictator over this body is me. My current endocrinologist, with her world-class education at the world-class medical center is a phony. She barely makes eye contact and has done nothing to establish trust with me. She does not explain anything or initiate any discussions with me. I am two-dimensional, just words on a piece of paper to her and that was never so obvious as it was when I met with the second opinion endocrinologist, who talked to me like he knew me and exactly how I operate. We waded into the weeds. It was like talking with Dr. Overinvolved, minus the sexual tension.  I felt completely reassured and I think I know what I need to do. I also really liked this endocrinologist and if I lived closer, I would absolutely hire him. He was genuine and invested, as was his staff, and no one is that way where I live now. He offered to do my care from afar but I don’t know how that will work with my HMO.

It seems a bit ridiculous that I ran away from my hometown and the only people who know how to take care of me the way I need to be taken care of are in…my hometown.  I keep washing ashore like Wally but not because of ocean currents; but because home seems to be where my heart is. How else can I explain going back there for a second opinion and being transported right back into the good part of what was an essential and healing relationship, but with someone completely new?  Perhaps it is not my world-class doctors at the world-class medical centers that are the problem, but me.

 

Am I Going to Let This Number Run My Life?

This morning was my six month follow up for thyroid cancer.  I go every six months because I have detectable tumor marker: Tg (thyroglobulin) and TgAB (antithyroglobulin antibodies). Because I am TgAb positive, the Tg is not a reliable indicator, so the TgAB is used as a surrogate tumor marker.  Mine had been on the decline and then steadied itself around 2.1  Until now. It’s more than doubled so now I am on a three-month follow up schedule.

I have known that the number doubled for a couple of weeks and I have been trying to live my life as “an indeterminate responder” for nearly six years. It’s wrecked me because that very brief time where I had cancer and was in treatment was so traumatic I am in fear of living it again. Everything from not being supported by family and friends, to Dr. Overinvolved and his rapidly cycling moods and actions, my inability to plan or see a future for myself, to the mistreatment I experienced in the hospital, to my loss of feeling safe with doctors and in this world; and that sense of knowing, to quote Virginia Woolf, “It is possible to die.”  This little number continues to wreck me and leave me unsteady every hour of every day. It is at the center of my depression, that I know for a fact.

How can I plan a future with this hanging over my head?  I am watching myself crash into the wall in slow motion and this could go on for YEARS before anything shows up on imaging and something can be done about it.

From an educated patient’s point of view, I fail to see how knowing I have this little number is contributing positively to my care. They won’t explore it further; I haven’t been scanned since I had RAI in 2009 and the ultrasound has not shown anything suspicious in six years. I cannot come up a medical reason as to why knowing this number and using it to continue to declare me NOT free of disease is doing anything but lining the pockets of my medical center. This means more appointments, more blood work, and more payments from my HMO.

Is it all just a money grab that has nothing to do with treating cancer?  I tend to think so at my most rational, thoughtful moments. But I cannot get out from under the anxiety and the fear of going through what I already went through even though the losses already happened and are permanent.

I am not sure what to do.  I will go back in three months. But after that…all bets are off. Just test my TSH and leave me alone. That’s the road I would prefer to take.