Kobayashi Maru

My latest paincation was intense and it was made more so by the experience of radiation. Now, like most things in this disease I was fortunate: only five consecutive days and maybe twenty minutes of my time each day. But the experience was surreal and it set off emotions and reactions that have left a permanent impression on my psyche.

I was anxious to get radiation to kill that tumor in L4. It was causing me unrelenting and intractable pain. And though the narcotics helped to get me through that pain, the side effects on my bowel health were too burdensome, painful, and frankly embarrassing. I was excited when I went for my first visit to get things set up. And, frankly, the first treatment was unremarkable.

Except for the machine.

On my first day I was escorted to the room and I met Varian, the machine with which I would be acquainted for the week. Right from the beginning this machine had a personality that filled the room. Had it been human, the machine would have made a fine model for a villainous character on Law & Order.

The machine was fat, a dull gray, and possessed no trace of a sense of humor. Its head emerged from the machine and looked down with one big eye. Right away the relationship was one of power–and I didn’t have it. I was escorted to and laid flat on the table. The technicians lined up the tiny dot tattoos on my skin with lasers, got me in perfect position, and then they left the room. Lie perfectly still, I was told. It was just me and the machine.

Without warning the machine came alive. Two arms emerged and expanded from the machine. One arm came out from overhead, its terminal end looked like an industrial street lamp with black coils in its center. Its stare was ominous and I wondered what purpose those black coils filled. Opposite this arm another emerged and expanded, this one ended in a flat panel. Though it was controlled remotely, in this room all alone the machine seemed to move under its own power. My eyes darted from side to side and I strained to take in as much peripheral vision as possible. What was happening? Clicks and the strained sound of machinery in motion were heard and, just as soon as they had emerged from the core of the machine, they retracted. I was not sure what had just happened. But the machine had come alive and this disturbed me.

Once the arms were tucked in, the machine turned and I saw its gold eye staring down at me.varian1 Inside the eye an iris of sorts; a curtain that was tightly closed then precisely parted in the center to create an irregular shape. This must be the shape of the tumor, I thought. It was through this eye that the tumor and the eye would communicate. Only it was a one way communication. A loud industrial drone was heard that lasted 20 seconds.

ERRRRRRRRRRRRRRRRRRRRRRRR. Radiation had just been projected through my body and I didn’t know how to feel. I looked around the room. Quiet. Cold. The eye circled around my body and was just out of my view. I heard the gold eye disc turning and clicking into place. I closed my eyes and saw mushroom clouds, people burned, silhouettes of ash. Wait. Don’t be ridiculous, I thought. This is not the same kind of radiation.

ERRRRRRRRRRRRRRRRRRRRRRRR. Twelve seconds this time. It rotated again, and twice more. Each time the fine tuning of the disc punctuated at the end by the drone of the machine and the radiation that bombarded one area of my body. Then suddenly there were two technicians in the room. “That wasn’t so bad, was it? See you tomorrow!”

No, it was bad. I just had a barrage of radiation launched into my body. Controlled, precise, and planned by experts in their discipline, but radiation nonetheless. Don’t you get it? What was happening to the tumor? Do cells scream? How many had been killed on the first zap? How many others were dying with burns and pain? What exactly was happening inside my body?

The second day was the same. The machine’s arms emerged from its central core and encircled me, the iris assumed its shape, the eye disc turned and clicked into position, and then ERRRRRRRRRRRRRRRRRRRRRRRR. It was like a horn of doom. Over and over. Five times. “You’re doing great! It’s not so bad!” I wanted to smack her. Day three replicated the previous two.

On the following day I could not lift my head from the pillow. It was all I could do to consciously arise and see to the well being of my feline companions. I slept and slept. All day and all night. Exhaustion from the treatment, I surmised. My physician said that this may happen. I tried to call the center to tell them I was unable to keep my appointment and I could not find the number; I called another and asked to have the message relayed to the technicians. One hour after my scheduled appointment the telephone rang: “Hello, Ms. Barrington. Where are you?” I explained that I tried to call and that I was unable to move. Every cell in my body was hit was exhaustion. “Oh, I don’t think so,” said the patronizing voice. “You shouldn’t feel anything like this until after treatment! See you tomorrow!” Click! I couldn’t even respond. What a patronizing bitch.

Day four I started to feel it: anxiety. I didn’t want to go. I didn’t want to sit under that machine again. That machine with the arms and the weird eye with the iris. I didn’t want to listen to that drone of doom or have that bitch tell me that everything I perceived was not real in her condescending sing-song manner.

My radiation oncologist prepared me well for symptoms, even if she thought that the chances were slim that I would experience them. The most obvious was nausea; because of the location it was unlikely that I would experience nausea, but if I did I was to tell the technician. The night before day four I had nausea. I didn’t think it was serious, frankly, but I followed instructions and told the technician before my treatment. “I don’t think you did,” she said. “Patient’s come in all of the time and tell us about symptoms they don’t actually have.”

“Did you ever have radiation,” I asked? “No, I have not,” she answered. “Then how about when a patient tells you what they feel you cut the patronizing know-it-all bullshit, treat them with respect, and consider that what we tell you might actually be true. What do any of us gain by lying about it?” Speechless, the technician passive-aggressively went through the motions. The machine was as imposing as ever and I was even more wary–of both the machine and now that one technician.

Having missed a day, I returned to my last treatment on Monday. I was anxious about it, but I dutifully went. A different technician this time; a kind young man who was professional and empathetic. I met him before and liked him a lot. The machine came alive for the last time. Its arms unfolding and stretching ominously. The eye and its adjusting iris and the rotation and clicks as it determined the precise angle then shot radiation through my body five times.

When I left I had trouble reconciling the two sides of radiation: supervised death of human and animal populations and supervised cell death. Abruptly, I dropped off the grid. My blog and all of its associated social media went quiet. A week or so later I visited family, but the skin on my back was still warm and the thought of radiation in my body obsessed me. I browsed through old photos of me and my friends swimming on Florida’s Gulf Coast. I wondered aloud why we couldn’t all go back thirty years to youth and health. When I boarded the bus to return home, I had no idea what would manifest once I arrived home.

20130914-152121.jpg By the time I arrived in the New York City Port Authority my brain felt like an omellette; I couldn’t separate logic from fear. It felt like the city was closing in on me. During the ride home I grew increasingly convinced that I would die in the taxi before I arrived home. Everything felt alien and uncomfortable–even my home. It made no sense and I wondered what was happening to me. As joyous as I was to see my feline companions–and them me–I didn’t want to be home. Something wasn’t right; I am always happy to be home. On sight of a pile of mail I started crying. I didn’t unpack. I was unable to eat. This wasn’t anything like that panic attack last December that was over in two hours or so. I saw no end to this. Every exhale was accompanied by a pitiful verbalization or manifested as a heavy sigh. I couldn’t get out of bed. Every sound, every smell, and every texture was repulsive to me. I was useless. Paralyzed.

Finally at wits end, I called my psychiatrist in a sobbing hulk of uselessness. Afraid to leave the house and travel, my friend Iris came to hold my hand and accompany me to his office. Face-to-face I cried and wailed, not understanding who this person was. I regretted everything, and for the very first time in the year since I was diagnosed with breast cancer I asked why. Why did this happen to me? I was powerless and felt as if I was falling off the edge of sanity.

Three hours later I experienced medical intervention with Xanax. I never took it before and even with these horrific symptoms I wanted to resist. I had enough of drugs, I said. But a little window of logic opened and I realized that I had no other choice. My friend stayed with me until I could no longer keep my eyes open and I fell into a relieved, quiet, and hopeful sleep.

It took two days to feel completely whole, but a positive change was felt and I once again could think rationally and look forward to the future. Suddenly I couldn’t wait to return to the office, to be with my friends, and to enjoy and embrace life. I was back to my normal self and I only wanted to look forward.

One of our community’s mutual friends, Nancy Schneider, calls cancer a total mind fuck. And, honestly, there is no other way to see it. Over the past year I have seen disease appear, disappear, grow, reduce, and die. I’ve experienced intractable pain, seen my career affected, my finances hit, learned the deep value of friends and family, and I am learning to live in the moment–not just in the present.

This is a test I can’t win on a level playing field. The only thing I can do is cheat with the help of my physicians, learn to bypass crises, and know that regardless of the chaos inside I am a strong and ever-resilient woman who is prepared to stay ahead of this sick game known as breast cancer for as long as it feels right. Were that this was only a fictional game that took place in a fictional classroom and not inside my body and mind. Kobayashi Maru, indeed.

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42 Responses to Kobayashi Maru

  1. Constantine says:

    As a respiratory physician I have to treat patients with similar malignant diseases on a daily basis. Although I tell myself that by now I have a good understanding of my patients’ perspective, it is instances like these that prove me wrong. Although the RT side effects are always on my mind and I do my best to prepare my patients, I never would have imagined the extend of the psychological burden you have described at the time of radiotherapy. Thank you for this. I hope that you are able to escape the KM test as Captain Kirk did.

    • Scorchy says:

      Thank your for your kind response. I think blogs like mine–and others, of course–help to communicate the patient perspective. It’s s delicate balance.

      I won’t pass the Kobayashi Maru, but I am going to do my best to outsmart it as long as I can!

      Thank you for reading and I do hope you come back soon.

  2. nancyspoint says:

    Hi Scorchy,
    I’m late to this post, but reading it sure got me riled up. Being accused of lying about your symptoms is deplorable. That technician should have been reported for being unethical. But, you had too much other crap to deal with. I’m sorry for your miserable experience with radiation. And the image you painted of the machine was really something. I’m always amazed by these machines and how there seems to be such a concern with taking care of them too. I mean it’s almost like the patient sometimes is forced to adapt to the machine. And yes, cancer is one big mind fuck. That sums it up well. I am so glad you started the Xanax and that you’re feeling better. xoxo

    • Scorchy says:

      That machine is nuts. You know, why the technician doesn’t take two minutes to orient the patient to the machine is beyond me. That technician was strange. Thanks for the love, baby! I couldn’t get through without you, Nancy!

  3. well, scorchY – HOLY SHIT!!!!!!!!!!! as luck would have it, i start that same radiation thing tomorrow. for 5 fucking weeks, m-F, then 3 weeks of internal rads, up my hoo-hah, no less. but at least then there’ll be no golden eye or bad ass bladie arms reaching down during that gig – just a massive cylinder (that’s my nice word for the fucker) filled with radioactive shit I have to hold inside for 20 minutes.

    well, it can’t be helped. I am going to approach the experience as well as I am able, and carry a few of my friends along in my pocket – named lorazepam (Ativan). and I am not one bit sorry that I read your account of what you went through – your writing is simply that superb. mostly I am so very sorry for what you went through, but delighted you are doing so well, enjoying your work and seeing your friends. you suffered w-a-a-a-y too long with that miserable pain and I am just so relieved for you to have it gone. I will remember your words, because I think they could apply to me, too: “…I am a strong and ever-resilient woman who is prepared to stay ahead of this sick
    game…for as long as it feels right.” love you, my friend, always with…

    love and light, xoxo

    karen

    • Scorchy says:

      Karen, take that Ativan! I can’t believe we get through this to tell about it another day. We really are strong and ever-resilient. The pain hasn’t gone, but it is getting better.

      Christ, five weeks and then a shot up the hoo-hah. Well, holding that crap in ought to entitle you to become an astronaut or something cool like that.

      You contact me whenever you want to vent. I am here for you.

      • scorch – you made me laugh SO HARD about the astronaut thing – I get a picture in my head of that goddamned, MoFo (HUGE) metal cylinder being inserted, then launching me projecting skywards – better have it tethered and all the freakin’ windows open, eh?! It would make a good image in a porno cartoon. oh, the crap our minds feed on with this shit…our world can often be strange beyond belief,,,thanks for your kind support. xoxo

      • Scorchy says:

        My work here is done. 😉

  4. Jan Hasak says:

    I am so sorry about all this. And to think that one technician had the nerve to tell you you had lied about your symptoms. What the …? She’s in the wrong profession. I hope the radiation really does its job. Your writing is priceless! xo

  5. Marie says:

    So glad you are back – at the blog, at work, at better days. Still laughing out loud at the post-it note in Mars/Venus ….

  6. Amusing how blog readers can understand how not to treat a patient, but a doctor or a tech has no clue and has to be told (or scolded). Push on friend… and push back too. Question for you (because this is very, very important) (that’s two verys — which is clearly very very important) Did you look up the spelling of “Kobayashi Maru” or is that something that you already had in your brain? God bless the cancer fighting nerds! (and all the other ones too). And yeah, I sort of, already knew, exactly what the title was referencing and implying…

  7. Roz Warren says:

    even as your mind is being fucked, you remain such a great writer. if i had the talent to make your battle with this scary machine into a comic book, i would. also, and this is TOTALLY off topic, but I’ve viewed that great little video you recently postedon FB of friday night in the cat house many times. You ought to post it here if you haven’t already.

  8. Renn says:

    Scorchy! One of the great benefits of blogging is that those in the trenches of treatment have an opportunity to be completely honest and tell the world what it’s really like to go through treatment — and side effects of treatments. We can’t talk enough about this! What you described happening to you sounded downright frightening!! I’m glad to hear it resolved itself relatively quickly.

    I can relate on a much smaller scale.Thought I was going crazy this summer. Have felt feverish since July (though my temp is below normal so no actual fever). Headaches daily. Zero energy. Hot flashes every 45 minutes. Could hear my pulse in my ears. Felt rapid heart rate. Woke up one morning with the sudden realization that it was the Tamoxifen. I felt like it was slowly killing me. I know that sounds dramatic. But that’s what it felt like! I had been on the drug for 2 1/2 years and handling the SEs just fine; but something changed. My body had had enough. I stopped immediately. Each day I feel better. Am starting an AI in October so this is a temporary reprieve — but I’ll take it.

    • Scorchy says:

      Tamoxifuck! I am glad I’m off it; I gained a lot of weight on that thing. Since stopping I’ve lost 22 lbs. (in part).

      Blogging helps to empty your head. You can dump a painful experience. And I truly believe that it can help individuals. Not by simmering in your hell, but validating their experience and helping them to dump their own painful experiences.

  9. Acacia says:

    I am so proud of you! I used to get “the chemo doesn’t do that” from my old onco. Funny, it didn’t happen before I started chemo, and now it does…..

  10. helensamia says:

    Why is it that radiation is dismissed as being “easy” when in fact there are all sorts of side effects.. Along with diahorea and tiredness I got shingles… And being in that room felt like a dungeon … Everyone else was well out of the way and that would worry me!!,… So yes we understand you even if those techs do not !!

  11. The Accidental Amazon says:

    Oh, sweetie…

    Honestly, it would not be a stretch for me to declare that getting radiation treatment is what turned me into a blogger. Swear to god, during treatment and in the weeks, months & years that followed, I became a kind of poster child for experiencing practically every kind of immediate, short-term, long-term and late-term side effect of radiation known to humanity. And wrote about them all extensively on the blog. My radiation oncologist was a lying sack of shite with respect to the side effects, but fortunately, my techs were kind, thank god. Still, the rad onc center was pretty useless about helping me deal with the problems it caused. When I wrote this bit shortly after starting the blog, I still had no idea what I was in for in the coming months & years. My emergent snark is in evidence. And would progress to heights then unknown to me. With ample reason… http://accidentalamazon.com/blog/glowing-in-the-dark/

    Needless to say, I am appalled but not at all surprised by your experience, but I am glad that it evidently worked to relieve the symptoms caused by your L4 tumor. I hope the relief lasts. Massive, gentle hugs to you, my friend. Kathi

  12. Susan says:

    Just glad this is behind you. I got terribly nauseous from radiation. I can’t believe they were so dismissive of your telling them how you were feeling. Egads! Most important though is it sounds like you are feeling better. I am so glad for you. I hope this lasts!

  13. Scorchy, this is another wonderful post about events that we all wished had never happened to you. I am so glad that you are back at work and feeling less pain.

  14. Oh, Scorchy! I am so sorry the radiation treatment was so awful. It is very strange to be lying on the table under the eye after the technicians scurry out of the room. Our gold eyes are surrounded by dozens of stickers a four year old would love. They do give you something to focus on other than the fear.

    Glad to hear you are feeling better. I have been thinking of you often and missing your blogs.

    • Scorchy says:

      Hi Kate! Given what others have gone through it is a true wonder that breast cancer patients the world over haven’t cornered the market on anti-anxiety drugs. It’s awful, no matter how you slice it. it’s just very surreal. So good to be back. Just in time to bitch about the pink.

  15. margaret says:

    You so clearly expressed what I thought all through my radiation. I hated every second of it. I hated that eye and the scream of the machine. My protocol was 30 days plus an additional 4 days of higher radiation called “the boost”. Every day I worried about what radiation was doing to my body. I worried about the last time the machine was calibrated. I worried about whether the technicians had programmed the thing correctly. Several years after my radiation, a series of articles appeared in the New York Times describing the number of radiation caused deaths in the USA caused by machines that had not been calibrated in years or by human error. It appears I had cause for concern and your anxiety was well justified. http://www.nytimes.com/2010/01/27/us/27radiation.html?pagewanted=all&_r=0

    • Scorchy says:

      Every single day I was there my thoughts turned to women and men who had to endure week upon week upon week of this madness. My physician wanted to do a one-day one hour session, but the insurance company wouldn’t let her.

  16. I’ve been thinking about you wondering what you’ve been up to, how you were going; your post made me cry, sorry to hear you’ve not been well and have had to deal with inconsiderate people that’s the last thing you need. Unless you’ve been through radiation yourself, I don’t think people really understand what you go through, physically & mentally. Hope you’re feeling better, great to hear from you.

  17. Knot Telling says:

    Oh, sweetie, I am so sorry. I also had horrible experiences with radiation, but I was spared the snotty technician. Talk about salt in wounds! Have you considered writing a letter to her department head, with copies to everyone in the world?

    {{{{{Scorchy}}}}} hugs for you, sweet one.

  18. dglassme says:

    Lovely my dear, as always detailed to the bone. We missed your coveted blog enters while you were out having an affair with Gold Eye. ~D

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