Fk being an interesting patient.

We spoke with Dr. Futran tonight. I’ve been anxiously awaiting this phone call for days, first expecting it sometime Monday, and then, after calling his office on Tuesday, expecting it tonight. I’d been expecting that, after this phone call, we’d know something, and we’d be able to make some plans, and it would feel like we were on a path.

Yeah. But. I’m an interesting patient. My case isn’t simple. Dr. Futran has been using the time to talk to other doctors and get opinions and consider things. And there has been a lot to discuss.

So, now, instead of feeling like we had a decision made and we know the plan and we’re starting it, I feel like we have a whole new set of decisions to make, and more investigation to do, and we’re nowhere near having a plan.


One interesting bit – On the CT they did of me a few weeks ago there appears to be a slight thickening at the top of one of my lungs that isn’t there on my scans from years ago. Maybe it’s just an artifact of the CT technique, or maybe not. We should get a PET scan to find out. (Stick a pin in the question of what that might mean and what dealing with that might be. PET scan, then next steps if any.)

Another interesting bit – Either surgical approach, either through the mouth or opening up my jaw, includes a risk of impairing the function of the repaired tissue. And I’ve already got some impairment following our previous adventure, so I don’t have a lot of room there. Potentially adding importance to …

Yet another interesting bit – Radiation and chemotherapy for this disease have apparently made progress in the last 9 years. Enough that we should discuss my case with radiation and medical oncologists, because we may be able to avoid surgery.

Which would be awesome, maybe, if it meant I didn’t have to get cut open, (but maybe not so awesome depending on what their side effects would be. Because I still get sick and twitchy just thinking about how bad the treatments I got in the 80s were.) And if we weren’t sure they’d be curative, having surgery after all that? Eeesh.

But I get ahead of things. We don’t know any of that. We can’t yet. It’s all out there in the big new pile labelled “stuff we will need to learn about and consider carefully before we get to a plan” that just got dropped in front of us. A big pile we now must wade into and process our way through, instead of just belting in and getting launched out of the surgery cannon in a week or two and recovering on the other side.

Tomorrow, instead of waiting to hear from Futran’s office about when my pre-surgical appointment will be, and what day to expect to have my surgery, I’ll be waiting to hear when my PET scan is scheduled, and when I’ll be having my ‘med-onc’ and ‘rad-onc’ appointments. And then I’ll have to go to those, and there may be other things after that. And suddenly April and May feel infinitely more complicated and unpredictable than I had imagined them to be a few days ago.

That wasn’t my plan, dammit. But then, I’d forgotten what it really means to be an interesting patient.

11 thoughts on “Fk being an interesting patient.

  1. *sigh* Gack. The good news: your doctor is up to the challenge. The better news: if there’s anyone who can get himself in the mindset for it, it’s you. The waiting seems worse than the actual treatment…and that will come in time.

    Look at it this way: if you weren’t such an interesting person, would you be such an interesting patient? It may be just me, but I don’t think so. I’m willing to bet that much of why Dr. Futran finds you “interesting,” more so than other people, is your thoughtfulness and self-awareness. He probably appreciates that you’re not being passive in this event, and that you’re probably pushing him to be the best doctor he can be in part because of who you are. Who you are makes people want to do their best for you…and I suspect that includes the whole team of health professionals you’re working with. Who you are as a person is what makes you interesting, not just what you’re dealing with in your soft palate.

  2. did I miss something???

    When did you think you changed your middle name to “Normal”?


  3. Ugh! Sorry you are incapable of being boring – it would obviously be a huge asset in this situation. Lots of good wishes, thoughts of strength and patience, and prayers that being interesting means there are more, better paths open to you in the end despite the stupid, frustrating uncertainty up front.

  4. Wall-climbing anxiety began when the calendar pages turned from first symptoms just after the 1980 fall semester began, tissue samples went to specialists producing 5 different diagnoses and damn! it was 1981 and no treatment had begun. This time it would seem better to do the “woulda-coulda-shoulda” before not after.

  5. Well thank god you’re just interesting. I hate to think what would happen if you were fascinating. Oh, wait . . .

    Sending best wishes for healing, strength, and some easy choices. In the best possible way.

  6. Sigh… At least it sounds like are are options, and that you’re not in a race against time, needing to DO SOMETHING RIGHT NOW.

    Gack! Hang in there. We’re all rooting for you as you face your challenges with the American medical “system.”

  7. Paul … Well … the really, REALLY positive viewpoint is to latch onto the idea that you have multiple options — plural — several possible ways of dealing with the situation, and that it’s a matter of identifying the best solution … or combination of treatments/solutions … to attack the problem. Your doctor sounds like a good guy … and how about that timing, Sports Fans? … Having him in the company of the best minds in the business … just when he might need to consult with others to get some additional perspectives on the latest challenge presented by you, his Most Interesting Patient. I’d say, “Hang in there,” also … but you and Kimberly have already proven, long ago, that you’re already the Master and Mistress of that particular coping and survival technique! J. D. Stephenson e-mailed me tonight and told me about Kim’s Dad. My profound & sincere prayers go out to you … and Kim … and her Father … and on your behalf. The three of you are in our thoughts and in our hearts.

  8. Others have said it better than I can. Good news is that the state of treatment keeps improving. We all know what an odds defyer you are. Handling uncertainty with grace is one of your many virtues.

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