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.

Here we begin.

On Friday, I was at UW Medical Center for a biopsy of some suspect tissue in my mouth and throat. This biopsy was done under general anesthetic by Dr. Neal Futran, the surgeon who was in charge of my squamous cell cancer surgery back in 2004.

Based on the exploration done in the OR, Dr. Futran suspects that it’s a new squamous cell cancer, but because of my history with lymphoma and radiation treatment, the samples have been sent to the lab for further analysis. We’ll have the results of that analysis the middle of next week.

The good news is that we have found this new cancer fairly early, and I am already in the care of one of the nation’s best doctors for treating it. (And he already knows what the inside of my head looks like!) Though it is too soon for us to have a treatment plan, it seems like we have some time to put one together. It’s likely I will need surgery, though we will also explore whether targeted radiation and/or chemotherapy would work. (I hope surgery will not be as complicated as my previous surgery, but it may have to be. Again, we’ll know more about the possible approaches later.)

Also good: I am far healthier, physically, emotionally, and spiritually, than I was in 2004. I also learned a lot of lessons from the experience of the 2004 cancer and the long recovery that have equipped me to better deal with whatever it will take to handle this go-round. I think all that can be said also for Kimberly. We are well-positioned to face this challenge together.

I feel confident that we will get through this. I have a good track record of beating past cancers, and have coped with other health challenges.  I see this as another one. For me, this doesn’t feel like a “Holy Crap, oh my god…” panic moment. It is mostly about figuring out what we need to do, and getting it done. I trust in Dr. Futran and his team, and my own capabilities, and I have Kimberly to help me.

That said, this is obviously a big challenge I did not have on my calendar for 2013.

Compared to past go-rounds, however, I’m not expecting this will require the same sort of “drop everything to focus on simply surviving” effort. I will need to make changes and adjustments to accommodate, but I intend this to be the most important, not the only, thing I’m doing for the next few months. (Details will of course have to wait until we have more information about treatment.) Both Kimberly and I are privileged to have employers and co-workers who will support us in that; I feel good about that as well.

One thing that we know was very important in getting us through before, and that we will want again, is the love and support of our family and friends. We know it’s out there. Consider this your heads-up that we need it in an enhanced way for a while. I have switched the “vibe-o-sphere” receivers to “ON”. Thanks.