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Down the rabbit hole of incidental findings

Posted in Health

London graffitiIt starts innocuously enough.
“Can you come in on Friday for a CAT scan? We need it to map your radiation.”
And off I go, to don one more pale blue hospital gown, black marks painted on my skin to guide the alignment for the radiation machine, chatting with yet another pleasant technician while I would rather be home with my nose in a book.

I have always been positive about the radiation therapy and I was determined to slow down a bit, enjoy the time off and not believe I would get tired or get blisters on my chest. And I didn’t. But a pleasant time off it wasn’t.

A couple of days later, the results of the CAT scan are posted to my virtual chart: everything is fine, until the last sentence, which includes words such as lesion, bone island and metastasis. I reread it carefully, and it appears there is a growth on my spine the radiologist can’t quite explain: possibly a bone island but metastasis cannot be ruled out.

I choose to ignore that last sentence until the following Monday when I mention it to my radiation oncologist. “I know, I saw it and I am planning to look at it with a different radiologist to see what she makes of it. It’s not uncommon to have incidental findings – they are mostly benign.”

And here I am, back to square one, familiarizing myself with medical terms that didn’t feature in my everyday vocabulary 24 hours earlier but on which I am fast becoming an expert: bone islands, hemangioma, the exact definition of a lesion. I am asked to go for an MRI to rule out what could most unlikely be a completely unrelated cancer. I resist the request a little bit but everything hinges on that most, a qualifier that is a bit too undecided for me or my doctors.

Another gown, another technician who wheels me into the MRI tube, a good approximation of what it might feel like to be in a coffin. Good thing I am not claustrophobic and I find some humor in the Hannibal Lecter’s style face covering I am donning. I plan to nap while the machine does what it needs but, despite the ear plugs, the clanking and clonking are still too loud. Not unpleasant though, and vaguely reminiscent of Brian Eno’s Music for Airports, a vinyl record I bought circa 1980. I close my eyes, do some yogic breathing and veer off into a meditative state. Forty minutes later I am wheeled out of the tube, relaxed and ready to tackle my weekend.

I try to put it out of my mind until Monday, when I visit with the radiation oncologist.
“I love your shoes. Where did you get them?”
“Rome” I reply drily.
I know doctors’ demeanors well enough by now to know if they start with shoes they can’t have wonderful news to deliver.
“Your spine is fine, just a couple of benign hemangiomas but..”
No no no, I tell her, I am not interested. Don’t want to know. Whatever it is can stay there unexplored.

It’s a lesion on my liver, the MRI can’t really detect yada yada yada. I refuse to go for an ultrasound.
“I need to get back to living” I tell my (pretty wonderful) doctor.
She nudges me and I relent, now worried that if she is pushing me she must think there is something to it.

tire dinosaursRationally, I know that my chances of having liver cancer are remote. Emotionally, I am still raw from having been told “You have cancer” a few months ago, from still processing what happened, from having to welcome the unexpected. I don’t want to find myself there again. Not now that I am so close to some peace of mind.

This time the gown is pink, the technician is a Brazilian woman called Claudia and I am too sleepy at 7 am to be overly concerned. Unlike other tests, the ultrasound might not be invasive but it is an intimate experience. Claudia sits next to me, in complete silence, sliding a wand over my abdomen methodically, like a lawnmower, intently staring at a screen. I know she is not a doctor and cannot interpret the images but I also know she knows what she is looking at. Would it kill her to tell me, at least, relax, don’t worry about it? Apparently it would.

I wipe off the gel from my tummy and go to work.

Since October, I have received a mammogram, two ultrasounds, two MRIs, two biopsies, and two genomic tests. Two of those diagnostics turned out to be not strictly necessary and one was performed wrong. I wonder if I am pushed to do more tests because the oncologist knows the disaster with one of my genomic tests, or because she is overly cautious, or maybe because I am a patient who asks too many questions and actually reads the minutiae of her test results. Probably a combination of all three. The bottom line is my personal contribution to the out of control costs of American healthcare.

At midnight, my doctor sends me an email. “Nothing to worry about, just another hemangioma, you are done with the tests. Thanks for being such a trooper.” I might be a trooper but I am emotionally exhausted.

I do a happy dance with a startled Ottie and send emails to all the people I plagued with my incidental findings.
“Hopefully you will now stop measuring yourself for a shroud” – leave it to sofagirl to turn my fear into benevolent sarcasm.

On October 10 of last year I entered a tunnel and only now I am starting to notice the exit signs. I am not done. I will never be done, not in the way life was before I stepped over the cancer line but the fears will ease, the beetroot red on my chest will fade and my boob will go back to its A cup size. I have one more week of radiation, of pale blue gowns, after which I am planning to shop for a different kind of gown altogether.

Images: spotted in and around London, courtesy of sissimum

Playing the cancer odds

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10 Comments

    • camparigirl
      camparigirl

      Phew is right….no kidding

      March 3, 2016
      |Reply
  1. Oh Claudia…please know I continue to send positive energy and thoughts your way. I have to admit despite the seriousness of your situation, I smile at your ‘thought bubbles.’ You are a strong, amazing woman who will definitely kick this thing in the teeth while tripping over Ottie only a couple times. Be safe. 😉

    P.S. The shoe reply was more than smirk worthy; I absolutely laughed out loud. <3

    March 1, 2016
    |Reply
    • camparigirl
      camparigirl

      Thank you M! The dogs have been so incredibly helpful, holding all my fears and craziness without judgment. But I am sure you know that.

      March 1, 2016
      |Reply
  2. My goodness – when I read the word “metastasis”, my heart just dropped. And then again at the mention of a lesion on your liver! What a veritable emotional rollercoaster! I’m glad that they turned out to just be benign hemangiomas (a new word for me too!), even though you had to go through all those extra tests. I suppose it’s a fine balance between “better safe than sorry” and “ignorance is bliss”

    March 1, 2016
    |Reply
    • camparigirl
      camparigirl

      There were moments when “ignorance is bliss” felt like the best approach. I would have rather not known, I was so afraid of having to take on something I felt I wasn’t up to. Obviously, in hindsight, I am glad I went through all that testing and was able to put it out of my mind, and not second guess every symptom.

      March 1, 2016
      |Reply
  3. You are an inspiration to us all with your great attitude. One week left!! I am sure you are counting the days.

    March 1, 2016
    |Reply
    • camparigirl
      camparigirl

      I am glad it comes through as great attitude. I feel there were days I was driving everyone crazy, including myself!

      March 1, 2016
      |Reply
    • camparigirl
      camparigirl

      Frankly, it was the only way I could deal with it, feeling like I had a modicum of control (whether it is true or not).

      March 1, 2016
      |Reply

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