Category Archives: Doctors

Change of date.

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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.

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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.

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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.

Door #3.

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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.

Hunh.

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.

The Scan.

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This Friday, I have my first post-treatment CT scan. The appointment with Dr. Liao to go over the results will be Monday morning.

The purpose of the scan is to see what’s currently happening at the tumor site. We’ve had to wait two months since the end of treatment to allow my mouth to heal up enough that the scan wouldn’t just show the tissue damage from the treatment itself. We’re now at a point where what shows up on the scan should be meaningful. This is really our first chance (beyond Dr. Liao’s observations early on) to see whether the treatment worked.

Am I nervous about this?

Hell, yes.

My coping mechanism for dealing with the anxiety mostly involves focusing on other things. I’ve gone back to work, which helps by giving me a big list of complicated things to get wrapped up in. There are all sort of household chores and mini-improvement projects I can throw myself into, and I’ve been doing that with increasing intensity. And I’m still recuperating, so making sure I’m getting enough calories and rest still takes conscious effort, and keeps me from obsessing (much).

At other times, I try to calmly consider how the site feels. There’s some pain when I open my mouth wide, but that’s quite likely due to expected muscle tightness from the radiation. There is some other lingering soreness at the site, but most of the healed tissues in my mouth are still sensitive, and you’d expect that spot to be the worst.

Still, as the date of the scan gets nearer, I find myself feeling increasingly anxious. And this coming weekend, between the scan and hearing the results, will be pretty tense.

What I want to hear, obviously, is that the scan shows no sign of disease, so the treatment definitely worked, and I can go forth to continue recuperating and begin a series of regular monitoring appointments. Yippee!

What I’m afraid of hearing is that the scan shows some sign of disease, so the treatment was not completely successful, and we’ll need to plan the next steps. I haven’t spent much time thinking about where this might lead, because there are too many unknowns, but it keeps popping into my thoughts. Surgery? Probably. Not good stuff? Definitely.

I’m also worried about the third option: ambiguous results. I’ve looked at enough scans to know they are hard to interpret and don’t come with special color coding on abnormal tissue that clearly indicates “radiation scarring” or “cancer.” I really hope that we don’t end up with this. I really want to know something on Monday.

Good wishes, prayers, visualizations, crossed fingers, etc. are hereby shamelessly requested.

No News is not Bad News.

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We’ve been a bit slow about getting new posts up on the blog, which I am sure may have worried some of you, particularly after the tone of the last post. Don’t worry; the lack of posting is not a sign that we’ve been overwhelmed or that things have gang agley. Instead, it’s a sign that things are proceeding as expected, and we are actually getting some time for other activities.

Since the end of treatment, I’ve had two follow-up appointments at UWMC. A week after the end, we met with the rad-onc department’s nurse practioner, Barbara Fristoe. She looked me over, said I was doing very well, and maintained the general consensus of the medicos that I was taking a surprisingly small amount of painkillers. The most exciting part of that appointment was getting the agreement to remove my PICC line, since my blood pressure and fluids seemed to be stable. We got the PICC line pulled that afternoon by the friendly folks in the infusion center, which was great.

The second follow-up was a week and two days later, with Dr. Liao. According to him, side effects should have peaked during that week, which certainly jibes with the impressions I had, captured in the last post. Overall, I appeared to Dr. Liao pretty much as expected. He did notice that I’ve lost 5 pounds since the end of treatment, which is more than I lost during the entire 6 weeks I was in treatment. He wasn’t overly concerned, but was glad to hear that I’ve been monitoring it, and taking steps to control that. He instructed us to pay attention and make sure I was getting enough nutrition.  (Which, I have to grumpily comment, is easy for people without mucositis to say.)

My next appointment with Dr. Liao is in mid-September, by which time I should have healed up enough for a CT scan to be useful to tell us how I’m doing, and review the effects of the treatment. I also have a follow-up on the med-onc side with Dr. Baik in August, but aside from that, my calendar is remarkably free of medical appointments. It makes a nice change from June.

So now I’m working on recovery. I think I’ve passed the summit, but there’s still a lot of road ahead. We did manage to fit in some non-recovery related activity this weekend, with a fair amount of socializing and some home-improvement activity, which I hope to detail in another post. Today I just wanted to catch us up, and let people know that all is going about as well as we could expect, even though we’ve been quiet.

Live blogging the last long Wednesday.

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Today is was Paul’s final day of treatment, which coincidentally is also the last long Wednesday. I going to keep updating updated this post throughout the day; latest information is at the top.

AND HE’S DONE.

Now we’re going home for a celebratory nap… or cry… or something…

*****

Afternoon radiation: We’re back in the radiation oncology waiting room. Paul has washed the Aquaphor off his face and numbed up the sores in his mouth with viscous lidocaine, in preparation for his last dose of radiation.

Before we left the infusion room to come down here, Rose checked his blood pressure again. It was up to 80/60, so the liter of IV fluids plus the liter of water he drank over the course of the day have definitely helped.

Unfortunately, this last dose isn’t quite the end of our day here at UWMC. When Paul had his PICC dressing changed on Monday, the PICC nurse used a special dressing that they don’t stock in the infusion room. They wanted to use it again today, and had to ask the PICC team to send it up. When we had to leave infusion to come down to radiation, the dressing had not yet arrived. So we have to go back to the infusion room again. How anticlimatic.

The radiation tech has come to take Paul back to Vault B for his last dose. More later.

*****

Medical oncology appointment: Paul takes his IV fluids with him when we go down the hall for his med-onc appointment. His pressure is 69/33, so systolic has come up a bit.

PA Yelena is back from vacation, so Paul sees her today. She says that Paul’s blood work came back with bilirubin levels higher than they like to see. His total bilirubin is 1.9 mg/dL (normal 0.3 – 1.9); direct 0.4 (normal 0 – 0.3 mg/dL). Because increased bilirubin can be an indication of liver problems, they recommend that Paul not get the final dose of cetuximab. She asks how Paul feels about that. He responds that they’re the experts, and if that’s what they recommend, it’s fine with him. I ask whether, as the radiation reaches maximum effect in the week after treatment ends, there would be any downside to skipping this dose. Yelena says that, while eight doses of cetuximab is the usual prescription, most patients end up getting only seven, because of one toxicity or another.

Also, Paul’s blood sodium is still a bit low (129, with normal being 135-145 milliequivalents per liter), though higher than last week, which may be contributing to the low blood pressure.

Because of the blood pressure issues, rad-onc wanted to schedule Paul for IV fluids next Tuesday; Yelena thinks this was a good idea, too. Paul wants the PICC out as soon as possible, but I prevail upon him to keep it for one more week.

We’ll follow up with the med-onc team in a couple of weeks; that and future appointments with them will be at SCCA.

Since Paul’s not getting cetuximab, but will be keeping the PICC, we go back in the infusion room until his fluids are done and his PICC dressing changed.

*****

Blood draw, take 2: The TPA worked! Rose successfully draws blood from Paul’s PICC, and sends it off to the lab. Then she checks his blood pressure, using her stethoscope. It’s even lower than this morning. She brings over a machine, which tries three times, assuming each time that his pressure must be higher, before agreeing with Rose that Paul’s pressure is very low. 60/33. (His blood oxygen, on the other hand, is 98%, which is  higher than the a.m. reading.) She reviews Paul’s current medications with him (the list they have is finally complete and accurate!), and comments that there are patients on CHF meds who have this sort of blood pressure all the time and are still walking around.

She hooks Paul up to a liter of IV saline, which we hope will help bring his pressure up.

Now we wait ’til time for his med-onc appointment.

*****

TPA, then wait an hour: It takes all of 5 minutes for Rose (who is wearing rose-colored jeans and scarf) to inject the TPA (tissue plasminogen activator, for those who want to know) into Paul’s PICC. Then she releases us for an hour to let it work. We go to our usual lunchtime retreat, an out-of-the-way space on the first floor of the surgical pavilion. Paul hooks up to a liquid lunch, and I pick up a sandwich from the adjacent little cafe. (They are out of diet Coke. *sigh*)

*****

Radiation oncology appointments: Paul’s blood pressure is low again: 78/50. His weight is 163, which is down a little from last week. And his blood ox level is running between 92 and 94%, which is a bit lower than yesterday.

We talk with Shannon, the nurse, and resident Dr. Dhami. First up: review his meds and check his skin. He’s taking 5-6 oxycodone tabs per day for pain, which makes it tolerable most of the time, but not when he’s eating. Also, one to two ativan per day for nausea, which at this point isn’t completely taking care of the nausea. And, whereas he was feeling nauseated only a couple of days a week early on, at this point it’s pretty constant.

Dr. Dhami checks Paul’s skin and mouth, which are still “holding up well.” This is a definition of “well” that only a medical professional would use. There’s no visible bleeding in his mouth, and only one tiny spot on his right cheek that looks like it’s peeling.

Sarah stops by to check in on Paul’s nutritional status. He’s struggling at this point with getting enough calories and sufficient hydration. Sarah congratulates Paul on keeping his weight so stable throughout treatment, but reminds him how important a high calorie, high protein diet is to his healing. Paul knows this, and I hear in his tone of voice that it’s hard for him to hear again.

Dr. Liao comes in with Dr. Dhami. He congratulates Paul on making it through treatment. (Of course, Paul points out that he’s not quite through.) He checks Paul’s mouth and skin, and reiterates that Paul is doing “well”. He asks about pain, and offers Paul long-acting narcotics. Paul declines. We discuss antiemitic meds, and get a scrip for promethazine, to try along with the ativan. He writes an order for a liter of fluids to go along with Paul’s cetuximab infusion.

Next, we head back to 8SE for TPA.

*****

Morning radiation: Jen checks Paul in, and they’re ready for him before we can even get to the waiting room. I wait, sitting next to Paul’s friend the puffer fish, while he gets zapped.

*****
Morning blood draw: We’re a little late getting to 8SE for Paul’s morning blood draw. Rose, one of the nurses, introduces herself, saying, “I’ll be your vampire.” She takes us to treatment bay 8, and gathers all of the supplies for drawing blood from Paul’s PICC. She flushes the PICC with saline (“Mmmm… saline,” Paul comments, as he can taste it.), then pulls back on the syringe plunger to see how well the PICC is drawing. And… nothing. Rose does another flush. Still no blood. So, now the plan is that we’ll come back as soon as Paul’s finished with his doctor’s appointments, and they’ll give him a dose of TPA, which is a “clot buster”, and try again an hour later. On to morning radiation…
2013-07-10 blood draw