The future is murky

PET-CT scans, a fourth ophthalmologist… and still no firm diagnosis for my eye. The future is murky.

Medicine is a science of uncertainty and an art of probability.

William Osler

This post is a brief update on what’s been going on in my little bubble since my medical oncologist expressed doubt about the raised retina being a metastasis of my breast cancer that was near stage 0. That was three weeks ago.

To rule out that there is another primary cancer site in my body, two weeks ago I underwent a PET-CT scan with contrast. From start to finish, that took me three, mostly uneventful, hours.

My first appointment to get the scan a week earlier was delayed after my lab report showed my creatinine level slightly elevated out of the normal range. While my horse sense said that the level posed no problem (confirmed by my oncologist), the hospital insisted I get clearance from a nephrologist—an unfamiliar word for me, aka kidney doctor. Another useless expense; more time lost.

PET stands for positron emission tomography; also called a nuclear scan. It involved injecting a low level radioactive substance (radionuclides) into my veins to highlight increased cell activity that the scanner reads and converts into 3D images. CT stands for computed tomography and is used to identify a tumor’s shape, size, and location. My scan was done with contrast dye pumped into my veins to get a clearer picture. From head to toe. Sounds delicious and safe, doesn’t it? Not.

I talk a lot about taking risks, and then I follow that up very quickly by saying, ‘Take prudent risks.’

Irene Rosenfeld

It seems to me that there is no way to avoid risks, if one is to live at all. Throughout my life, I’ve leaned into risk, choosing to take it over safety, and had a richer life for it, even with a handful of failures. Yet I like to think that I’m a sensible risk taker, not an impulsive one.

Many of the medical treatments and tests I’ve undergone in this cancer journey seem utterly monstrous and barbarian to me. Including these nuclear scans. One day science will advance enough for us to look back and be horrified at how cancer is being treated this day and age. But for me, today, it is what it is, and the risk of having the scans is without doubt lower than not having them.

The hospital staff were kind and professional, fully briefing me on every step in the procedure in advance. Including how my body might feel. They carefully watched me for any adverse physical reactions to the tracer and the dye. There were none; not immediately nor in the following days.

One observation I made was that they asked me at least a dozen times, “do you feel pain?” I did not. But I can’t help wondering whether that’s what we in the legal field call a leading question.

Where they expecting me to feel pain? And for people less calm, less stoic, than me, wouldn’t asking that question over and over be suggestive? It brings to mind the parent who freaks out when their child falls and scrapes a knee; it signals to the child to bawl. While the parent who stays unruffled gives space for their child to regulate their response. Don’t get me wrong, I’m pleased the staff were empathic, but perhaps the question could be more neutral: how does this feel?

The most serious mistakes are not being made as a result of wrong answers. The true dangerous thing is asking the wrong question.

Peter Drucker

The good news, or rather fantastic news, received five days later, was almost a clean bill of health! The report described some minor body defects, but no new cancer site!

The bad news, or rather troublesome news, was that the report put me back to square one, without clues to what was going on in my eye. Meanwhile, my world is getting blurrier.

My medical oncologist asked me to see another ocular oncologist, so yesterday I did. But that got me no closer to a resolution or a definitive treatment plan. He wants to do another sonogram, but I’m failing to see how that will resolve anything. And I’m test-weary. Not to mention the financial strain.

Without going into technical detail, the options given (at this point) put me between a rock and a hard place, pardon the cliché. Risking irreversible eye damage by doing a biopsy, or, assuming metastasis and risking irreversible eye damage by undergoing radiation to the eye, or, doing nothing and risking further tumor growth and/or further metastasis to another part of my body. Ugh. Nothing to like there.

That’s enough for today. I wanted to write about emotional complexities, how despite these uncertainties, mysteries, murkiness, I had a satisfying day today. My inner peace has not been ruffled. The sun will rise soon.

If uncertainty is unacceptable to you, it turns into fear. If it is perfectly acceptable, it turns into increased aliveness, alertness, and creativity.

Eckhart Tolle

And that is how we hop into the Lunar New Year! I wish all of us a gentler, kinder, wiser year of the yin water rabbit. Add to that wellness and abundance.

12 comments

  • Glad to hear you have a clean bill of health ! Test weary is a great phrase and so true. We are always looking for what is wrong rather than what is right. I say this from my own experience of working with someone. It reminds me of what I used to do when a younger clinician. Now i see ‘pain’ simply out of balance with the natural laws of regeneration and healing. Medicine is a business.

    Science is a way of thinking much more than a body of knowledge.
    carl Sagan

    • I’m just pleased that my medical oncologist is being doubtful and not jumping to prescribe more chemo, as one of the ophthalmologists had suggested. And I agree with the Sagan quote, Alison. Thanks for caring. 🌸💜🌸

  • Keep it up, Cisca. You is doing good!!! Keep gathering info, keep pondering, keep positive – as you have been doing…for your whole life 🙂

    XOX
    Jenniekins

  • So sorry you are having to deal with this. I enjoyed how you wrote about your circus of circumstances around your eye health. May your new year move you toward good health
    Toni

    • Thanks, Toni. I like to joke that were it not for these rogue cancer cells, I’m healthy as the proverbial horse! 🌸🙏🌸

  • “I can’t help wondering whether that’s what we in the legal field call a leading question.” Indeed, and the kind of observation I love to observe you making!

    I’m sorry those next step options sound perfectly yucky – but again, you are so pragmatic about it. Dear you, this was a perfect update – exactly from where you are. I am hoping to hear nothing but good if not great news ultimately – but always know you can navigate where that lands us – no matter what!

    XO

  • So happy to hear about the result that that there is no new cancer. Still sending supportive energy for the eye.

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