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.

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This, After All.

IMPRESSION:

Absent thyroid gland. No evidence of recurrent mass in the thyroid bed or abnormal cervical lymph nodes.

That’s what it says after this morning’s neck ultrasound.

After I almost broke down in the ultrasound suite waiting for the tech to come in.

After I snapped at her over the neckline of my dress and the utility of a hospital gown (my apologies, Sue, I get agitated when I feel vulnerable).

After I laid down on that table for over 40 minutes.

After she took nearly 100 still images of my neck.

After I went to work disassociated, the world moving in slow motion.

After I become so angry I threw my phone against the dashboard in my car as hard as I could muster.

After I become so angry I just wanted to plow my car into others and keep driving, waving one hand out the window, displaying the one-finger salute as I sped by.

After eight years, this still rips my guts out.

After six years I still wish it was Dr. Overinvolved performing my neck ultrasound, his dank body odor overtaking me.

After all of this, I am stuck here, living a life that leaves me dead inside.

 

 

 

I Might Be The Asshole Your Mother Warned You About, or, Why I Hate Cancer Fundraising Events

Sunday morning. I’m wearing a bright orange shirt and I am astride a Schwinn indoor cycling bike, surrounded by seventy other people on bikes too, randos jumping around with orange pom-poms, the music bumpin’.  I focus on my ride and my heart rate which tops out at 168 BPM many times. I only get thirty minutes on the bike and I want to make the best of it. One of the instructors is yelling about how we are alive, we are still breathing and let’s imagine a world with no cancer. I feel irrationally angry at him, so I ignore him, pushing on those pedals as hard as I can.

For a number of years, I declined to participate in this event, but this year I thought I would give it a try.  I just cannot get into the celebration. That’s what it is, of course, a celebration of life and survivorship that raises money for cancer research. What kind of person feels anger at an event like this? Feels that it is torture? Me, me , me. I cannot celebrate. Sometimes I feel as if I am no closer to getting over this than I was the day I was diagnosed.

I have always had trouble calling myself a survivor. I feel like a phony, a pretender who had a cancer that is not legitimate. But yet I am lumped in with people who had legitimate, real cancer. My treatment period was so short; it consisted of  a series of one-shot deals: surgery, then radiation. Done. Presto. Go back to whatever it was you were doing before (an actual quote from Dr. Overinvolved). Really. Now that I know nowhere and no one is safe? Sure, no problem.

I do not feel honored or supported by the other participants. I feel alone because they are so happy and celebratory. I cannot get to the other side of my cancer experience, to the side where I can celebrate.  My still being here is not a good enough reason to shake my orange pom-pom.

The Prison of My Own Expectations

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The author: Joshua Tree, CA

The question that has haunted me since my cancer fiasco is the Granddaddy of all existential questions, “Why?”  All of this time, I have carried around the belief that I went through everything for some grand reason. I subsequently tortured myself with the idea that I needed to turn around and use my experiences to help others in a very defined way. I took college classes in chemistry, medical anthropology, and a whole slew of other disciplines trying to strike gold. I imagined myself yelling, “Eureka!” while a clear path laid itself out before me, just begging for me to step foot onto it.

It never happened.

But, oh, how I tried!  Last fall I mustered up the energy to apply to graduate school and it has not gone well.  I have one application still outstanding, to UCLA, and I am not optimistic.  I have received five other rejection letters already.  I have an acceptance to a private school I cannot afford. It will drive me $100k+ into debt and imagining being in such a situation is like visiting my own grave. I have felt upset, depressed and defeated, but today a feeling of freedom came over me.

All of my life, I have coped with challenge through education. Some people drink, I research and read everything I can find. I did the same with cancer and continue to do so. I set up my Twitter (@athycalife) as an information source in order to take advantage of this.

Education, or getting more of it, is no longer the path for me. I always felt I was supposed to be doing something better with my life than my current career, which is good and useful all on its own. I felt that I was supposed to have a graduate degree. I previously attempted to earn one, but was thwarted by Hashimoto’s Disease. That experience has hung over my head for the last ten years, a loose end that must somehow tie in with my desire to use my cancer experiences to help others.

But I was wrong.  My current career could theoretically could be used to help others with cancer. I have this blog, the Twitter account and for those that stumble upon them, I hope they are useful. In short, I think am exactly where I need to be and am no longer dogged by this expectation I have pinned on myself. That’s freedom.

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.