Change of date.

Last night, Dr. Futran called with the results of the biopsy and follow-up from the tumor board meeting. There were no surprises: the tissue is malignant, and everyone agrees that surgery is the way to go.

The surprise came when we talked about the surgery date, which we’d scheduled for December 3. It turns out that Dr. Futran is leaving the country on December 4 to speak at a conference in Davos. Yes, Switzerland. He wasn’t comfortable with leaving the day after Paul’s surgery. (Didn’t sound like a good idea to us, either.) He said that he’d talk with Barbara, the patient care coordinator, and she’d get back to us with a new date.

(A little googling after that phone call revealed that Dr. Futran is on the board of the AO Foundation, and will be speaking there. It doesn’t bother me a bit that Paul’s surgeon has an international reputation.)

Today, Paul got a call from Barbara. We have a new surgery date: Monday, November 25. (Our Thanksgiving plans just changed, too.) And Paul has pre-op appointments scheduled with otolaryngology nurse practicioner Carol Stimson and the anesthesiology folks on November 20. (Looking back at the post I wrote about Paul’s pre-op appointments the first time around, I’m reminded me that we also had a pre-op with the medical consult team. We’ll have to check about that, too, as we had some issues with their management of Paul’s heart condition and overhydration last time.)

We’re glad that the surgery’s sooner rather than later. (OMG, it’s sooner! Yikes!) And Paul will have 8 days to recuperate before Dr. Futran flies off to Europe.

Deja vu all over again.

Given the situation, it was an OK way to start the day. There was enough time to wake up, snuggle a bit, drink our coffee and get dressed before we were on our way to our appointment with Dr. Futran. No time to spend worrying or brooding – just straight into acting on the next step in the process.

As I said when he walked into the exam room, I was both happy and sad to see Dr. Futran. I like him a lot. He is both an extraordinarily talented, skilled surgeon and a warm-hearted, caring doctor.

On the other hand, well, we were there to talk about him cutting my head open to get the cancer out.

To get a sense of what that means for us emotionally, you really need to understand what our year was like in 2004. For those who didn’t know us then, or have forgotten the details, the long story is detailed on our first blog. On February 27 that year, Dr. Futran performed major surgery to remove a tumor at the base of my tongue, as described in this post. I was in the hospital for 10 days, recovering at home for weeks, and it was 9 months before I could swallow well enough to have my PEG tube removed.

So while part of me was able to feel warm and cared for as Dr. Futran examined me, and did a quick biopsy, another part of me was overwhelmed by what we were there to talk about. In that post I wrote about the previous surgery, I referred to my animal brain jumping up and down on the “flight” button of the fight-or-flight controller. I think today that part of my brain is still in shock, not able to fully process what’s going on. Sitting stunned, staring blankly at the fight-or-flight controller seems a better description.

Dr. Futran showed us the PET scan, and carefully explained what we were seeing and what it meant. There’s a clear bright spot. The good news is that it is clear of any vital structures, like the carotid artery, and it is localized. It’s pretty much right where my tonsil would be if it were still there, not up into the palate, not down into the tongue. It is operable.

We are looking at a procedure very similar to the one in 2004. I think of it as the little brother of that surgery. 7-10 days in the hospital. Splitting the jaw open. Trach. “Free flap” of skin and muscle tissue used to reconstruct what gets cut out, though this time from my thigh, not my forearm, and no skin graft required (phew). Swelling. Unable to talk. Oozing. Healing. Tube feedings. Probably not as long as last time, since this area isn’t directly involved in swallowing, but there’s no certainty.

We’ve scheduled it for December 3.

We have some advantages this time. We have a good idea what we are getting into, which helps. I already have a PEG tube in. We know enough to get a PICC line back in early, before I’m lying impaired in a hospital bed, so there will be no repeat of the “droid with needles” story. We have a better handle on how to coordinate and use our strong support network of family and friends. And we know lots more about mundane but important things like tube feeding formulas and managing intestinal processes. We are more prepared to get through this.

But still, we are talking about literally cutting my head open in four weeks. And it may be the ‘little brother’, but it ain’t that little. It’s serious surgery, and serious healing time. My Christmas plans just got changed, and that’s the least of it.

Oof.

I wish.

I wish I could tell you that the news from Paul’s PET scan this morning was good. I wish I could tell you that the radiation zapped the tumor into oblivion. Oh, how I wish I could tell you that we’re now into the periodic scan phase of this go-round with cancer.

But I can’t.

The news is not good. The PET scan lit up.

It didn’t light up “like a Christmas tree,” as you sometimes hear. The area that lit up was considerably smaller than in Paul’s pre-treatment scan, and the rest of the scan looked the same as before.

While the diagnostic radiologist’s report on the scan wasn’t done in time for Paul’s noon doctor appointment, Dr. Liao is fairly certain that the bright spot on the scan is cancer. It’s been long enough since the end of radiation that the glow isn’t likely to be from tissue that’s still healing. And there’s a sore spot in the back of Paul’s mouth that hasn’t healed, right about where the scan lit up, that Dr. Liao said looks a bit worse than at Paul’s last appointment.

Still, the news could be worse. The cancer is localized, and there’s less of it.

So what now? At this point, surgery appears to be the only option for getting rid of the tumor, as Paul has had the maximum radiation dose they can give him (for the next few years, anyway), and chemotherapy alone is not curative for this cancer.

Dr. Liao thinks that, with the reduction in size of the tumor, it will be more easily resectable, but we’re still looking at major surgery in an area that has already been subjected to both radiation and previous major surgery.

After we got home this afternoon, and had a long cry and a way-too-late lunch, the scheduler from the UW Otolaryngology department called. Paul has an appointment with Dr. Futran, the surgeon who performed his cancer surgery in 2004, at 8:15 tomorrow morning.

More to come. Please keep sending your good thoughts, love, prayers and well wishes our way.

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.

Foo.

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.

The phone finally rings.

If you don’t get a call back from your doctor’s office by 5pm on a Thursday afternoon, you probably assume that you’re not going to hear from anyone that day. That’s certainly what we thought after Paul left two messages at Dr. Futran’s office this afternoon.

So when the phone range at 8pm, I figured it was a political/survey/some-other-variety-of-annoying call. Instead, it was Dr. Futran. And he was calling from Florida, where he’s attending a big meeting of otolaryngologists, so it was 11pm for him. (Have we mentioned that we like him?)

Here’s what he told us:

The pathology report confirmed that this is a squamous cell carcinoma. As there’s no sign of cancer in the area of Paul’s previous surgery, this is a new primary tumor. While it’s probably been developing slowly for a while, the tumor is relatively small and seems to be localized.

Having reviewed Paul’s previous radiation history, they aren’t sure it’s possible to give him a high enough dose of radiation (with or without chemo chaser) to be curative. And, if they were to reach his maximum dosage and the tumor wasn’t gone, we’d still be looking at surgery… after Paul’s mouth had been irradiated.

So, surgery it is.

Here’s the big question: can Dr. Futran perform the surgery orally, or is the Full Awesome Power of Mechanistic Western Medicine procedure he used last time a better bet? Oral surgery means a smaller surgical area, simpler reconstruction (perhaps just a skin graft, rather than a muscle flap), and quicker recovery. However, he’d be going in from the front of the tumor, and he has some concerns about getting clear margins, and protecting Paul’s carotid artery (yes, please!), both of which would be easier to do with the more complicated surgery.

He told us that he needs to do some more research before deciding which approach is likely to be best for Paul. Since he’s spending the weekend meeting with a bunch of the best head and neck surgeons in the country, he’s taking the opportunity to review Paul’s case and the surgical options with some of them. (I’ve been a bit unhappy that Dr. Futran was going to be out of town this week, as I wanted him to be Doing Something to Fix This, but it turns out he’s doing that in Florida. Paul will be getting opinions from some of the best minds in the field, and we don’t have to fly anywhere for them.)

Dr. Futran will be back in Seattle Sunday night, and will be in touch early next week to discuss plans and schedule a date (sometime in the next few weeks) for the surgery. As Paul told him tonight, we respect and trust him, and we’ll go with his recommendations.

We can fix this.

While Paul was waking up after his biopsy, Dr. Futran came to the surgical waiting room to talk with me. One of the things that Paul and I liked so much about him during the last go-round was that he always took time to talk with us, to go over details and answer questions until we were comfortable. Friday was no different.

Paul’s already told you some of what Dr. Futran told me/us, but I figured I’d provide a little more medical detail. I always want as much information as possible, and these details made me feel a little better:

  • The tumor is at the top-back-right of Paul’s mouth/throat, about where his right tonsil would be if he still had it. Because of its location (i.e. not in the base of the tongue, where Paul’s earlier tumor was), surgery to remove it (if that’s the route we go) should not have as much effect on Paul’s speech and swallowing as the first surgery did. Obviously, this is good.
  • The tumor feels like it’s surrounded by soft tissue, rather than being attached to bone. This is also good. Paul’s previous tumor had attached to his jawbone, and removing that portion of the bone severed the nerve within it, leaving part of his face and mouth numb.

While we were talking, I told Dr. Futran that I’d read about Roger Ebert’s death the previous day. He allowed as how this was the sort of case – due to Ebert’s celebrity and the complications that plagued his treatment for thyroid cancer – that he and his colleagues discuss when they get together. But he also heard the fear behind my words: I’m afraid that my husband might die. And, in response to that unspoken fear, he said to me, “We can fix this.”

I’m holding on to those words.