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

Beneficence

On days when I am burnt out on the gym and it is too hot for me to hike in the mountains, I walk along the beach near my apartment. Sunday was one such day. As I strode down Main Street to the walking path, down the Strand and back, my mine wandered from work, to foregoing graduate school, to whether I should move again or not, to cancer, to Dr. Overinvolved, what it would be like to not be alone, and other mundane topics.

On my way back home, the waves crashing nearby, I found myself replaying the day I had radiation treatment. It’s been on my mind lately as it became a discussion topic in a health advocacy class I recently took about crisis, communication, and informed consent. I meant to tell a different story that day, but as I started writing, something occurred to me. Dr. Overinvolved never provided an opinion about whether I should have radiation or not. He said he could go either way and it was up to me. I was anxiety-ridden and traumatized, so I was most interested in reducing my long-term risk. Of course I pursued it! My tumor marker was a little jumpy, just as it is now, so I said yes, let’s do it. I knew the risks and I had read all the research. But he never said, “You should have this.” or “You should not have this.”

So what was he being paid for, exactly?

In one of the many books I have read about professional boundaries, one of the precursors of boundary violations is a professional who is uncomfortable with his/her power and authority. The professional is either too distant by denying the importance of the professional relationship or tries to be less in charge by denying his own power and authority (equalizing the relationship). Both are for the comfort level of the professional, not for the good of the client and both destroys boundaries that protects clients like me.

On this day, he and I walked out of the exam room together and out into the crowded lobby to take the elevator down to the basement where he would give me the radiation pill. We were out of context and he felt hugely present to me. I could feel him next to me as we stood in the elevator, even though we weren’t touching at all and I felt safe, protected, bolstered, and strong. We arrived at basement level and he pointed at the chair I was to sit in. As I scurried over, he knocked on a door and a man came out of a little room. He was the radiation tech. He confirmed my identity and what dose I was to receive, then told us to wait. Dr. Overinvolved sat in the chair next to me and pretended to read my file, glasses on his nose. I remember glancing over and thinking, “I hope that’s stimulating reading material.” The tech reappeared with a clipboard and a form that asked questions about pregnancy and breast feeding. Dr. Overinvolved sprang into action.

“Why does she have to fill that out?” asked Dr. Overinvolved

“All women of childbearing age have to fill it out,” replied the tech.

“It’s unnecessary,” said Dr. Overinvolved, becoming clearly agitated.

“She has to,” replied the tech.

“Her pregnancy test was negative, you know!” yelled Dr. Overinvolved.

“She has to fill it out!” And with that, the tech went back into his little room, slamming the door behind him. I sat there, bewildered, clipboard in hand and said quietly, “Ooookay, guess I better…fill…this…out.” It took five seconds for me to check off every single “no” box on the form. He didn’t say anything.

That’s not weird at all. Nope. Not one bit.

We finally went into the little room with the tech where he handed me a cup with a dust-filled capsule in it. I swallowed it. We all stood there for a few minutes to make sure I didn’t throw it up, then we got in the elevator. When we arrived at the first floor and the door opened, he said something about when I would have a scan and that someone would call me. I was walking away from him with my back turned as he spoke, since I was going to be emitting gamma rays very shortly. I looked back over my shoulder at him and smiled to let him know I heard him. He was walking backwards very slowly, watching me walk away, and his face just lit up with the brightest, most sincere smile I had ever seen from him. I thought to myself, “Wow.”

I didn’t know it at the time, but that was the last time I would see him.

I felt that everything was finally finished. That was one of my reasons for choosing radiation. It was common for all thyroid cancer patients to have radiation and since I did not, I felt that my treatment was incomplete somehow, that the possibility of something lurking was strong. A lot of my fears that were at play when I chose radiation came true anyway. My tumor marker never went away and it is not stable, making my follow up difficult, which means I have worried about something lurking, though not so much since the second opinion.

As for him, I find it very hard to believe he has acted like this before and it has gone unnoticed. This wasn’t the first time I witnessed him yell at the staff, either. Once he yelled at a nurse for giving him the wrong file and he used patient names in front of me too, like he was giving me a glimpse behind the curtain. At some level I must have given him some relief from the stress and responsibility of his job, or he saw me as someone who could do that for him. I always made a point to tell him that he helped me because I don’t think many of his patients ever got better. But me, I am the former fat girl cancer survivor success story! I was on track to become one of his diabetes patients and instead, I became once of his cancer patients and lost nearly 100 pounds, all at once, and while doing that, I taught myself all of the terminology and standard treatment protocol for my disease. He once said to me, “You know more about this than any of my other thyroid cancer patients!” He sounded impressed and I beamed at him.

As for me, I know that I am “guilty” of trying to equalize the relationship by doing this as well as care taking him to some extent. I had spent a lifetime playing up to authority figures and ministering to their needs in order to garner their approval. I was nobody’s daughter, just a lens that others used to see their own reflection. I was abused, not valued, and I internalized all of it.  If I were just “good” enough, maybe I could get that approval and treatment I deserved.  I attached to him like a barnacle because he validated me, he saw me and I am ashamed of that, of the thrill it gave me.

When I presented a portion of this scenario to my class (me taking the full responsibility for choosing radiation or not), they responded by saying I did not give informed consent and that he was trying to further his own agenda at the expense of my medical care. The word “neglect” was used more than once, a word I would never have imagined using, yet it fits. I can chalk it up to another instance when “the only good one involved in my care” did not demonstrate beneficence. My ambivalence persists.

The Shadow

His fingerprints were everywhere, his presence palpable. His name was the second thing Dr. Second Opinion said to me, and that was when I knew how I had been squeezed into his schedule so soon. When he spoke to me, he already knew I was well-versed in the jargon and technical details of my cancer. There was nothing in the 100 pages of medical records I sent over that intimated this. I felt his influence again later on, when he walked me to the ultrasound room and he became giddy, “How did you find me or decide to come to me? It’s so random!” Why did Dr. Second Opinion find me any different than any other patient? Isn’t it always random when a patient chooses to see a doctor? I had a gut feeling he had spoken with Dr. Overinvolved.

I left my appointment with Dr. Second Opinion feeling the best I have felt about my thyroid cancer in years. He performed his own ultrasound and he told me the persistent TgAb is due to my previous Hashimoto’s Disease until proven otherwise. None of the medical records I sent over said I had Hashimoto’s Disease, but I did have it.

Dr. Overinvolved’s office was within shouting distance, located at the other big medical center in town. Truth be told, I had to make a pro-con list to keep myself from running to him. He had a lot of cons, one of which is his tendency to wear his emotions on his sleeve. I knew he would be frustrated, if not angry with me, for having such a high level of concern about this after so many years. Ultimately, the deciding factor was the potential for new insight about my cancer that would come from someone totally new. I had a strong sense of what Dr. Overinvolved would say. I also feared all of the emotions it would dredge up, one of which is a deep sense of ambivalence.

Dr. Overinvolved was a major player in my original diagnosis. There are the obvious reasons- he performed my biopsies, he told me I had cancer at 12:51pm on that very bright day in April, then did all the follow-up until I left. But that intense shared history started when I began keeping his secret.

I remember how he set off my warning bells and how I instinctively confronted him with a quizzical look. He looked at me sheepishly.

“I was just, uh, checking the angle.” He walked away, continuing to give me that same sheepish look that said, “I know it’s wrong but I cannot help myself.” The nurse entered the room and he reverted back to his persona as the confident, controlled authority. Then he did the biopsy- shoving a needle into my neck 8 different times. We argued. He became angry with me and by the time he snapped off his latex gloves, his shirt was saturated with sweat.

What did he do. I was laying down on the table. He came over to my left and rubbed his hips against my side and left arm. I never told anyone and I pushed it out of my mind. I had to. Too many terrible things happened to me at once and this was minor amongst all of those other events. When I wrote this sentence, a huge sense of panic arose and I had to walk away from the computer to talk myself down. I really want to type, “Maybe I just misunderstood.” No, no way did I misunderstand. That’s clear. This was not the last of his incursions on me, but it was the most blatant.

I want to scorch the earth and say he’s a terrible monster so desperately, because it seems almost incompatible with a scenario where he could be anyone good. I usually refer to him as a creeper and he clearly abused me, but I cannot ignore that there was goodness there. The goodness that I received from him is all that I have to hold onto from my cancer experience because it was lacking from nearly everyone else. I held onto that for me, not to absolve him. If he’s a terrible monster, than there was no one good involved in my experience. I cannot face that reality. But in that conscious denial, I am stuck. Trying to unpack this with another person leads to frustration. I make therapists uncomfortable and have been victim-blamed. I have read so much about the dynamics that underscores these situations but it has not released me. Dr. Susan Penfold has a great article on TELL, which is a website that talks about sexual abuse in therapy. It definitely applies. http://www.therapyabuse.org/p2-sexually-abusive-psychotherapy.htm

I extracted myself from that situation by leaving, which was a victory. Keeping myself from running to him when I found myself in this situation was another. But he lives on in my head, a puzzle I have not been able to solve or let go of. Some of that is because of me; I was raised in a very cold environment with a serious lack of empathy and any love was conditional. In contrast, he accepted me and all of the tumultuous emotions I felt at that time, never once telling me how I should feel or what to do, in sharp contrast from everyone else. This felt like a blissful revelation. He would be much less important if others had met these basic needs.

To come home and realize very quickly that Dr. Second Opinion had spoken with Dr. Overinvolved about me was a comfort and a terror. He knew exactly how to speak with me in a way that honored my intelligence and knowledge, and thus I received the explanation I needed for years. It’s a terror because it took away my anonymity. It was chilling because Dr. Second Opinion emulated him so well, minus the sexual undertones.

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.

 

Anatomy of a Second Opinion

My HMO authorized a second opinion for my thyroid cancer two and a half months ago.  I went through my copies of my medical records and discovered many gaps, so I went about the business of contacting three different medical centers in an effort to fill them. I was about 90% successful. One of them I had to request twice before they sent me anything and part of what I needed they said they did not have, which I know is wrong. The other said they would respond to my request in five days. It took twenty-eight. My authorization runs out in two weeks. I can’t wait around any longer. Last week I faxed over 110 pages of medical records, per their request, and wait for them to call me, hoping I can still get in.

In the interim, I spent inordinate amounts of time scrutinizing the imaging tests that came to me on white-labeled CDs. I looked at pictures of malignant lymph nodes and compared them to my images. I calculated L/S ratios. I watched my last node biopsy, thinking, incredulously, “That lymph node looks totally benign!”

In June, I saw my primary care physician because my heart palpitations became terrible; I woke up more than a few times gasping for air and I suddenly can’t breath while I am working out. Dr. Overinvolved instructed me to never be afraid to make an appointment if I feel I have become hyperthyroid. That’s what I thought was occurring, so I went, and it was an awful, terrible, no-good appointment for reasons that will get their own blog post. My EKG is normal. My echo is normal. I started having panic attacks at the gym when I climb stairs and I don’t know what to do to make them stop.

Over Memorial Day weekend, my endo’s office called me to reschedule my three-month follow up. She only works one day a week and has decided to switch her one day from Tuesday to Wednesday. So now I am having a four month follow-up. My respect for her and any sense of trust I have in her expertise has dwindled further.

I had my blood drawn at the three-month mark anyway and my numbers are exactly the same. She has no comment in the interim, so I have to wait until late July to hear what she wants to do. I know what I want to do, and hope that the second opinion will agree with me.  There are two choices I find acceptable. Scan me. Or put me on yearly follow-up. I’m taking my life back.

If I fail to make the HMO’s deadline, I will go see Dr. Overinvolved and pay cash. He will tell me to take my life back; I know exactly how he thinks about thyroid cancer and there’s no question he will agree with me…and that’s why I would prefer to see someone else for that unbiased perspective!

I miss him. He is that safe person in my head, despite what he did. I have not yet found a way to reconcile what happened. I’ve read more books on the topic of transference and sexual abuse by health/helping professionals and it’s clear that when these things happen, the patient being wonderful or special has nothing to do with it. We are merely a vehicle and it’s all about them and their unmet needs. I keep trying to tell myself this, but I need the romanticism of the story to keep myself going. There was no one else, nothing else good to come from this and I need it to have a purpose. Without that storyline, I’m not sure how I would cope. Perhaps I would cope better.

In Violation of the Geneva Convention…

The other night, I had a nightmare that I was going to be restrained by my neck and I kept yelling, “You can’t! I had surgery! I had cancer! That’s illegal! It’s in violation of the Geneva Convention!” and I woke up with a start, gasping and quivering in fear.  “The Geneva Convention.” I mumbled to myself.”In violation…”

What’s in violation of the Geneva Convention, dear reader?  Torture.

I have doubts and questions and fears about my follow up, about the ever present tiny Tg and my recently doubled TgAb, the massive reliance on ultrasound. I previously instructed myself to put it on the shelf and not look at it again until June. Pending those results, I would then seek a second opinion if I continued to feel uncomfortable. Some days I can do this, and others I cannot. Seeking that second opinion right now feels premature, and there’s the loaded question of who I would get it from.

Dr. Overinvolved is one of the few people I listen to and believe when he gives me his opinion. Part of the issue is I don’t trust my doctors. Him, I do, and I do because he’s real; his over involvement helped me in a myriad of ways. He was in my corner and I knew it. No one else did that for me. There’s also the dark-ish side of his over involvement and those intense emotions between us. Transference never dies. Not to mention, he is not the most well-qualified specialist I could consult with. But I trust him and he knows the history, including why I find this so upsetting (hint: it’s not depression). That may be more important to me than the actual medical situation.

I also have other less than noble reasons for considering him. I want him to know how this has turned out. He said I was cured and that mets were theoretically impossible. That’s not what the blood work says. None of this hurts him no matter how over involved he may or may not have been. It is still my life being sullied by this and that will not change if he learns of this turn of events.

The alternative is to consult with someone I do not know who is infinitely more qualified. The trust issues could remain, or it might settle them down if this opinion is in agreement with the current one. However, my trust issues go much deeper than my PTSD from the original surgery and treatment. I was at another medical center prior to this one, and it is that medical center that instilled the doubt that has laid out this course I have been on for the last six years. Is it wise, then, to throw another new ingredient into the mix?  I like the idea of seeing Dr. Overinvolved because he’s not a new ingredient.  I like the idea of seeing someone brand new because there is much less bias involved.  I must be clear; I do not believe my treatment by Dr. Overinvolved was compromised.  I think he made some claims he should not have, but everything else he did was right on.

The torture, then, is not knowing what to do, who to turn to, and who to believe in as much as it is being in this position in the first place. I remain partially submerged under layers of questions and doubts about the clinical course not taken with my next move not at all clear.

Discordant Thoughts on Year Eight

Next week I will have my eighth annual neck ultrasound and blood work at UCLA.

Fuck this shit.

It still takes up too much space in my brain and time away from my life.

Can I just stop all of this and decline these tests?

I am what is now being called in the ATA’s new guidelines a patient who is having, an “indeterminant response to therapy.” I have detectable antibodies and additional biopsies have been done, but they were benign, or the sample was too poor for evaluation. So I sit around and wait for something to happen. That’s how I have spent the last eight years, after all. Waiting for something to happen and nothing has happened except I have suddenly become old and exhausted. To the outside, this inertia is not evident, but to me it is heavy and ever-present.

Eight years ago, my thoughts about thyroid cancer and my health was that there was nowhere else to go but down. Because I was rapidly losing weight, others had the opposite expectation. I tried to find the optimism for myself. I moved to Los Angeles for a man who quickly disappeared, as they tend to do. I also moved for a job that did not work out then took another job that is also not working out while taking a toll on my health. I cannot count on my career as a source of satisfaction, yet I have nothing else going for me.

To men, I am as invisible as a size 8 as I was at a size 24. The Myth of Being a Former Fat Girl is dispelled on my ringless fingers. I could blame cancer for that. I was much sunnier before the diagnosis, before my doctor failed to manage his counter-transference and pulled me into his personal darkness, before the man I took a leap of faith for slapped me across the face for no reason and never spoke to me again. But I kept trying. Therapy. More therapy. Failed experiments with anti-depressants. Of course, I am one of those people who gained weight on Wellbutrin. I have kept trying though, and always believed this was to my credit.

Running with a burst of optimism I felt during the four weeks I took Wellbutrin, I summoned all the energy I could find to work through the months-long process of applying to graduate school. After an application season that was essentially a failure, I am now faced with going $120K+ into debt or not going at all. The only school that admitted me is a private university that counts on graduate degree programs for revenue. I am not going as paying that off will be the rest of my life. If I were ten years younger, I think…things could be so different.

I cannot imagine being 36 years old without all of this baggage from having cancer. I have no idea where I would be or what I would be doing without it. I am certain many of my decisions would have been different. I would not have waited to so long to apply to graduate school. I would not have ever met the man I moved to Los Angeles for, or bore the burden of my doctor’s inappropriate behavior. I do not believe that people are basically good. I am still waiting to be proven wrong.

So, here I go: year eight. My endocrinologist will look at me with pity (her empathy face needs some work), tell me I am too fat, my high T4 needs to stay that way, and that I need a support group. She is my 3rd endocrinologist in four years and while she is an improvement over the last two, I find her barely tolerable. But I will play my part of Pliable Patient and hope I do not cry out of anger, frustration, inertia, or fatigue. Maybe this is the year I will finally be told I have no evidence of disease (NED). I can always hope.