Door #3.

Remember in my post about the scan that I was writing about how they’re hard to interpret and don’t come with special color coding on abnormal tissue that clearly indicates “radiation scarring” or “cancer?”

You may also recall me writing that I really hoped that we don’t end up with that sort of ambiguous CT scan, and how I really wanted to know something definite today.

Yeah. Well.

The radiologist reading the scan pronounced it “stable”, meaning he didn’t see much change between my latest scan and my pre-treatment one. Dr. Liao, with the benefit of having looked at the actual patient, read it as showing some improvement, particularly on the surface of the tissue inside the mouth. But in the deeper tissue there is something that shows up on the scan, though we can’t know exactly what it is. (My untrained eyes looked at the scan and saw that even that abnormality in the deeper tissue seemed narrower, presumably a change for the better, but I have no idea what I was really looking at.)

Before reviewing the scan results with us, Dr. Liao did a thorough physical exam of my head and neck, and said that he saw clear improvement. The surface seems very smooth and looks good, and when probed with his finger seems soft. The rest of my mouth is healing up well from the radiation, and the skin on my face and neck looks good. He said the small puffy pouch below my jaw on the right was probably lymphedema, and we’ll get some training on how to massage that to help it go away. All in all, the clinical signs look good. Nothing looks worse, and all the stuff he can see and touch seems better.

So what do we do about this inconclusive CT? Well, a PET scan would be able to show us if there was metabolic activity as opposed to just scarring. And we could compare it to the one I had before treatment, on which the tumor is a visible bright spot. (It’s so obvious, even to the untrained eye, that Dr. Liao joked it was like “Oncology for Dummies”.) We’ll get a PET scan!

Only it’s too soon to do a PET scan, since I am still healing, which would also light up on the scan. So I’ll get a PET scan in two months, and meet back with Dr. Liao, and Dr. Futran, who’ll be monitoring my long-term care, at that point.

Oh. Umm…OK.


Since we left the appointment, the “calm, rational adult” part of my brain has been reviewing all the good news. First, there is a clear absence of bad news. No sign whatsoever that I am worse. That’s very good. Second, a highly trained professional has examined me physically, and was very pleased by what he saw. The clinical signs are good. Third, CT scans at this point are often inconclusive. Though we and Dr. Liao were hoping for one with clear interpretation, it wasn’t guaranteed, particularly in a patient with my history. (There has been a bunch of messing about and scarring of tissues in that area already.)

All the actual news we got today was good. There just wasn’t enough of it.

Which is why Kimberly and I both left the building feeling badly. Both of us have been so keyed up about this appointment, and while we are both really happy we didn’t get bad news, what we wanted was unadulterated, complete good news. And this doesn’t feel like that.

For months now I’ve been believing this treatment was going to work, and willing myself to sustain that belief while we really clobbered my body in serious ways. I’m really, really ready to go from believing that it WILL work to getting the proof that it DID work. I want to feel like we’re done (modulo the recuperation and the lasting side effects and the small possibility of recurrence, of course). And despite today’s good news, I don’t feel that.

I guess we’ll know more in two months.

8 thoughts on “Door #3.

  1. Oh, man. I’m sorry it’s not the unequivocal good news that you wanted. I’m really glad that Dr. Liao is pleased, though. Big hugs to you both.

  2. Consider both of you hugged…seriously. I know it’s going to be hard, but please do keep convincing yourself that this did work; it’s just that you have to wait a little longer for the proof of it. There’s a part of me that wonders if you’d feel a little better if this had been skipped, and you’d had to wait a few months for the PET scan, but that’s a moot point. I’ll keep offering merit in my daily meditation for you. Let me know if you’d like to have other members of my temple do so, too. Also, I’m here when you need me. Just tell me what I can do. I probably speak for everyone who reads this in saying that.

  3. Thanks for posting, Paul.
    I’m really (really really) glad it’s not bad news, and I empathize with inconclusive -> disappointment. It was a healing milestone, too, today. And I’m glad you’re having success there: working, making bad musical pun jokes, cleaning the coop…

  4. The thing about life is ambiguity. It is everywhere. And certainly we want certainty. One of the things that you have taught me, over and over, is to be ok with ambiguity and with the journey that is life. None of this helps, of course. But really, this is good. You are healing, you are feeling better each day. That is really, really good. You have each other and you have an amazing community of family and friends. And that is really, really good. We love you so much.

  5. when is good news not good news??? TODAY!! while it is not new in the way you wanted, it really is good news. It is not worse, larger or un-healing – it is clearly better. It is just that it is not a version of news you wanted to hear…bummer. But…you still need to keep that positive visualization going….will it to be gone, will it to never come back. I am sending those vibes into the universe to you, don’t let the negative boo-birds block them!

  6. I remember the feeling in the winter of ’80–’81 when your tissue samples were sent out and 5 different diagnoses came back. Turned out not to matter when years of various strong treatment modalities finally prevailed. The intellectual tools you two bring to coping with the false summits and reporting them to family and friends are so superior that I for one must rely on them. Your emotional strengths in dealing with yet another purgatorial torment are what are most extraordinary and exemplary for all of us. We await the next report and the ones after that. We are “with you”.

  7. So the journey continues, and so does the healing. Hang in there and hold on to the good news. Much love to you both.

  8. Life is all about uncertainty so celebrate the good news and absence of bad news. Your attitude has been so positive and very helpful for me in dealing with my small health problems. I’m so happy there was only positive feedback from your doctor. Your courage is amazing and contagious so reach out for all of our positive vibes coming your way. Love you to the moon and back!

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