My eye has atypical features

Today, I returned to the eye clinic, and the outcome of all the tests done so far is to do more tests. Getting to that outcome was an interesting process for me.

I arrived at the clinic at the appointed time, 9:15. Within half an hour, I was called in, but not to see the esteemed ocular oncologist I had expected to see. I was first interviewed and examined by a young intern from Australia. After his review of the images taken with a fluorescein angiogram last Friday, his first estimation was that I had a metastatic tumor that had raised my retina.

But he wasn’t sure.

He saw the need for additional cross-sectional images to determine the structure of the tumor. He sent me to the photography section of the clinic, the same place as Friday, and I waited less than an hour before a technician called my name. Quite amazing in a country infamous for its long waits for medical appointments!

The technician operated an OTC (Optical Coherence Tomography) machine, another non-invasive imaging technique that uses light waves to generate detailed images of internal structures—in my case, the back of my eye. Talk about a state-of-the art diagnostic tool!

I didn’t really look at a clock, but I’d say that took about 45 minutes. The procedure involved no pain or discomfort at all. I felt completely calm throughout. And I want to appreciate “out loud” how gentle the technician was; I felt he really cared about my comfort.

No act of kindness, no matter how small, is ever wasted.

― Aesop

So back upstairs to the doctor’s office I traipsed. Again, not an overly long wait before seeing the intern again.

He stuck to his original observations, but showed me that the tumor was in parts wrapping around my optic nerve. Yikes!

Finally, the esteemed ocular oncologist with four decades of experience entered the small room. She had an aura of confidence and no-nonsense about her.

It’s what I expected after reading reviews about her online. Half the reviewers praised her to high heaven, writing that she was the best in the province; the other half whined about wait times and her gruff demeanor. After a few minutes of talking with her, I understood that her frankness could indeed offend others more emotionally vulnerable. I, however, highly valued her candor, and even more after she laid out the course of action.

Your candor is worth everything to your cause. It is refreshing to find a person with a new theory who frankly confesses that he finds difficulties, insurmountable, at least for the present.

― Asa Gray

There was more sharing of my history, images, and test results. She then asked the intern what his conclusions were.

When he repeated what he had told me, she said, “No doctor, we are going to argue.” Of course, they did no such thing, as he completely deferred to her. For a second I held my breath. Now what?

She had a teaching moment with him, and I admit I understood little of it. It didn’t help that we were all wearing masks and they spoke softly, facing the two screens with images of my eye. More than a few times, I had to ask them to repeat their words.

When she turned to me, still sitting in a big black medical chair, she said, in a nutshell, “I’m not convinced it’s metastasis. It could equally be choroidal melanoma. And our first job is to find out what it is, before we discuss treatment options.” Oh yes, please.

You might ask, what difference does it make? Aren’t they both cancer? Well, yes, but you won’t get a medical explanation from me. What I gather is that they are treated differently. And that matters to the outcome.

She went on to explain that my case is quite rare. And the difficulty in diagnosing the tumor was that it was atypical, whatever it is—an aberrant metastasis or an aberrant melanoma. This is not how I’ve ever imagined myself to be “special”! LOL!

So what now? More tests to determine whether there is a cancer site (again).

Tomorrow I can go to the laboratory to draw blood. For the others, I must wait until the clinic/hospital calls me with my schedule. Fingers crossed that this can move forward swiftly.

We did not talk about treatment options at length, but she did mention that these tests were to avoid a biopsy, if possible, which carries its own risks. Treatment will be considered after all the results are in. She also forewarned me that the worst-case scenario was losing my eye, as in the whole thing.

By 3 pm I was done at the clinic.

I continue to feel calm. Losing an eyeball is not the worst thing that can happen to me. Losing my life is, and even that doesn’t scare me.

Wondering whether the Universe is testing my ability to cope with uncertainty? I mean, it just goes on and on. I’m coping fine, thank you. One intentional step, one glorious day, at a time.

The only thing that makes life possible is permanent, intolerable uncertainty; not knowing what comes next.

― Ursula K Le Guin

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22 comments

  • Atypical describes more than your eye, my dear friend. I’m picturing the conversation between the cancer cells that want to take up residence in your body. They must be working especially hard in this atypical land of optimism and hospitality you provide. I’m sure you are familiar with Rumi’s “Guest House”. I shall continue to visualize the struggle of these aliens as overwhelmed by where they find themselves, and continue my prayers for the insight and wisdom of your docs. Thank you for keeping those who love you upadated.

    • That’s so sweet of you to say, Ardis. Now I too will visualize these crazy cells interacting with my exuberant personality… LOL. And yes, I know Rumi’s sage poem. Grateful for your prayers. 🌸🙏🌸

    • For anyone not familiar with The Guest House by Rumi:

      This being human is a guest house.
      Every morning a new arrival.

      A joy, a depression, a meanness,
      some momentary awareness comes
      as an unexpected visitor.

      Welcome and entertain them all!
      Even if they’re a crowd of sorrows,
      who violently sweep your house
      empty of its furniture,
      still, treat each guest honorably.
      He may be clearing you out
      for some new delight.

      The dark thought, the shame, the malice,
      meet them at the door laughing,
      and invite them in.

      Be grateful for whoever comes,
      because each has been sent
      as a guide from beyond.

  • Dear Francisca
    It is not easy ! Metastasis…. Melanoma…..both are ugly things ! You have reached an admirable calm and a degree of acceptance that is impressive.
    Acceptance and your positive attitude are the keys…..
    I am with you in thoughts. Avec toi en pensées.
    Mireille

  • I am happy to read your posts – its like listening to you here beside me – and “hear” you finding bits of humor throughout this arduous process. Thank you for your joy!
    My favorite priest says “focus on the humor, not the tumor!” and you are doing exactly that. ❤️

  • Thank you for the update Francisca. As you say more of the unknown and riding that wave until it reaches the shores. Feels like you are balance is impeccable. With aloha,

  • I just read about the case of an aneurism in an eye that was misdiagnosed as a tumor. One of her doctors wasn’t sure about the tumor diagnosis and sent her to a doctor in California who specialized in this and said that only about 50 cases had been diagnosed and most are improperly diagnosed as tumors. Sounds like your doctor is doing the right thing by being ultra cautious about proceeding. Sounds like its good she is your doctor. Sounds like you are spending a lot of time in med offices…nothing new. Also sounds like waiting there and in Manila are equally time consuming.

    • So right on all counts, Jill. Interesting note about the aneurysm; I plan to mention that to her. Thanks always… 🌸🙏🌸

  • Cisca, every bit of you is special 🥰. I too adore a doctor who is straight talking and “road tested” – bed side manner is less crucial as long as it’s not cruel: and we all can be that sometimes.

  • Fingers crossed for you, Francisca.
    I’m having both eyes operated on for cataracts on Monday 13th November, and my Lady Love will be coming up from her Edinburgh residence to take care of me for the recuperation period.
    I have been 90% “blind” in my left eye for almost 6 months; it has only served to provide some perspective (depth of vision) as that cataract is so dense.
    My oculist told me that I was effectively one-eyed! I don’t know if that will be some comfort to you, or knowing our last-but-four Prime Minister, Gordon Brown was one-eyed since losing an eye in a rugby match whilst in his 20’s.
    Courage.

    • Alan, may you have stunning reversal in your blindness. I have many friends who have had cataract surgery with excellent results. I am not holding my breath that I will have the same result. But as I wrote, I can handle whatever happens. I have been living with 90% blindness in my left eye since last December, so I know that alone (ie being one-eyed) won’t change my quality of life. Thanks for stopping by and your kind words. 🌸🙏🌸

By Francisca

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