Thursday, September 8, 2016

Whipsaw!

I hardly slept last night. K and I had read up on squamous cell carcinoma (SCC), and it's just not appetizing literature. Today was the day I was to meet with oncologist Dr. Famous Squamous and see what was on the menu.

At 5:45, after about 2 hours of sleep, I got up with K, and we drove to Wicked Famous Cancer Hospital. We walked in, and the x-ray tech started an IV in my arm and injected me with that radioactive sugar I was talking about last night. Then, took a nap for maybe an hour. When I woke, my tumor had had time to suck up this delicious stuff, and I lay down for the scan. I don't remember that part, because I fell asleep again.

Then, K and I went home, and I slept. Shortly after noon, we drove back to Wicked Famous. In the car, I went over the notes I had taken on the treatment of SCC, guessing on what Dr. Squamous would probably have in store for me and what questions or objections I might have.

At the hospital, we were quickly put in an exam room. There, we sat for a almost an hour. (I'm not complaining. That would make me a hypocrite.) I actually got some work done, but, I mostly worried about what the next few months or years were going to bring. Those were not happy thoughts. Meanwhile, Dr. Otto La Ringologo, who had given me that distasteful diagnosis last week, kept poking his head in nervously, saying, "hi," and looking around.

Then, Dr. Squamous' very pleasant oncology fellow came in to take a history and examine me. I always enjoy sharing my medical history with oncology people for the first time. It makes their eyes bug out.

At long last, the eminent Dr. Squamous came in. I could barely restrain myself from peppering him with questions as we shook hands. I hadn't seen my him since my last cancer in 2005. He looked a little older.

His head was a slightly bowed, and he seemed almost rueful. He had a little smile on his face. Quietly, with one eyebrow raised, he spoke. "Before we go too far into treatment questions, we need to clarify some things. Did you see the pathology report?" I had. I have inside access. "Did you notice that there was a lot of description in it, but no definitive statement of diagnosis?"

I had noticed that. There were a lot of scary words like "dysplastic" and "invasive," but nowhere did it actually say, "squamous cell carcinoma."

He shook his head a little. "I'm not sure it is squamous cell carcinoma."

K's and my jaws dropped, and, suddenly, the Earth shifted.

"There are other things that could look like this, and when I talked to the pathologist, he refused to be pinned down. It could be squamous cell carcinoma, but it could be a fungal infection, or it could be osteoradionecrosis.* It's also odd that you are having no symptoms. I would expect you to be in a lot of pain with SCC at this stage. And, I looked at the films from the last few years, and there has been the same enhancement in the same place all this time. This year, it's a little bigger, but, if it's SCC, it's moving a lot slower than SCC usually does."

He told us that the PET scan showed enhancement only in the nasopharynx. That means, if this is malignant, there is no invasion of local lymph nodes, and there are no metastasis. That was kind of nice to hear, but I was barely listening by then.

The rest of the visit seemed like one long exhalation of relief as we planned next steps. I will head down to F'in Famous Cancer Hospital in NYC (a.k.a. The Big Fruit) and show my pathology slides to their experts. I will meet with a surgeon (yet to be pseudonymmed) down there to discuss whether she can do a procedure to get more tissue if the pathologists need it for diagnosis or if she is willing to go in and scoop up the dead tissue and let The Fixer patch it up with another piece of my thigh or something. That might prevent me from getting any more of those cheesy infections or from rupturing my brain lining when I laugh too hard.

Of course, we did go over the worst case scenario. If it is SCC, the only proven chance at a cure would be a big surgery and more radiation, neither of which are necessarily possible with me. Otherwise, there are some very harsh old chemo agents and some newer meds that are probably not worth trying unless I am in a lot of pain (which I definitely am not!) or having other symptoms. There are some clinical trials for newer medicines, but that would be a 'hail Mary' shot. That's what I have been sweating about for days, but, suddenly, it seems a bit less immediate now.

So, this cauliflower may yet turn sour, but it's very possible that it's only burnt. This adventure is not over, but it's starting to look like it will have one of those dumb plot twists where the protagonist wakes up only to find they dreamed the whole thing. Thank you all for coming along with me this far. Even if there is no SCC, I may end up having a big, nasty surgery in The Big Fruit, but everything just got a quite bit less terrifying.

Be well,

Tom


P.S. You would think I would have learned by now. This is the third time I have been whipsawed by Wicked Famous. The first time was in 2005, when, from the radiology, they thought my small, contained cancer from 2004 had returned and was going to kill me. It just turned out to be a silly old osteosarcoma that got all better after a giant surgery, tons of radiation, and a year of chemo. The second time was 2012, when they thought they saw a big tumor on my clivus, and it was just an infection that only required a month-and-a-half of IV antibiotics. This time, though, La Ringologo told me the pathology showed SCC. It may still be that, but wow. "Fool me once, shame on you; fool me twice, shame on me;" fool me three times, and I'm going to New York.



* a.k.a. supercalifragilisticradionecrosis! Osteoradionecrosis is death of bone due to radiation treatments. The entire irradiated area does not all die at once. More and more of the tissue in the radiation field can progressively die off.




How I Feel Right Now:

3 comments:

  1. Love the photo of how you feel. Can it get any happier than a dog bounding through a field? What would the photo be if you were just like plain healthy?

    ReplyDelete
  2. Can you hear the cheering coming from across the pond?! Sending lots of love from Devon! xo mj&j

    ReplyDelete