The penultimate long Wednesday.

paul front 2013-07-07

OK, so it’s Sunday evening, four days after the penultimate long Wednesday, and I’m just finishing writing about it. Good thing I’m not on deadline. But, by way of apology for making you wait, this post includes a couple of photos of Paul, taken on our front porch earlier this afternoon. His poor face is really taking a beating. Now on to the Wednesday update.

You, dear readers, probably know the drill by now, but just in case, it goes like this: morning radiation, rad-onc team appointments, lunch break, med-onc appointment, cetuximab infusion, and afternoon radiation.

When Sid checked Paul’s vitals before the rad-onc appointments, his blood pressure was low: 85/55. Paul’s heart meds lower his blood pressure, but it’s usually about 100/60. Still, Paul didn’t feel lightheaded, as he sometimes does when his heart meds kick in. He hadn’t had much to drink that morning, so he might have been dehydrated. More fluids, the rad-onc team suggested, either orally, or via IV along with his cetuximab infusion.

Paul’s weight has remained stable for weeks, which continues to impress the rad-onc team. They were also impressed that he’s still eating anything by mouth; he attributed this to a combination of magic mouthwash and Yankee stubbornness. (Since Wednesday, his oral intake of food has decreased further, but he’s still eating something every day.)

In the past week, the skin on Paul’s cheeks and neck has become more red and irritated. When he has Aquaphor ointment on his face, there’s relatively little pain and itching, but he can’t have anything on his skin during his radiation treatments. (Apparently ointments or creams on the skin can create what’s called a bolus effect, intensifying the dosage that the skin receives. Not Good.) So he puts Aquaphor on after morning radiation, washes it off before afternoon radiation, and then puts more on again after the second dose. Paul asked if there was anything else that he could or should be doing for his skin. Dr. Dhami, the new resident this week, asked if Paul’s beard was still growing. It is, and he’s switched to an electric razor. She suggested that at this point he could stop shaving, or shave less frequently, without affecting the fit of his radiation mask. OK.

Since next Wednesday is Paul’s last day of radiation, Paul asked whether he would have a cetuximab infusion that day as well. Dr. Liao confirmed what the med-onc PA had told us last week, that they usually give a dose of cetuximab even if it falls on the last day of radiation.

We asked Dr. Liao what to expect after treatment ends. He explained that the maximum effect of the radiation will be 1 – 1 1/2 weeks after the last dose, so Paul’s symptoms will continue to worsen for a few days before they start to improve. (Paul is Not Happy about this, as his mouth and skin are increasingly painful.)  He should notice his skin and oral mucosa starting to heal in 2-3 weeks. Full healing can take up to 6 months, but given how well Paul’s been tolerating the treatment, Dr. Liao expects that his healing may be quicker than the norm.

Following the end of treatment, Paul will see Dr. Liao’s PA, Barbara, after a month, and will see Dr. Liao after two months, at which point he’ll also get his first follow-up scan. If Paul has concerns or needs help dealing with symptoms during the first month, he can see Barbara sooner. After that first scan, Paul will go back to Dr. Futran for long-term follow-up appointments. He will also see the med-onc team until the cetuximab side effects have cleared up. The PICC line will probably come out shortly after he finishes treatment; the PEG tube will stay in until he’s healed enough to eat regularly again.

At the end of the appointment, Dr. Liao did his usual looking at and poking around in Paul’s mouth. He reiterated that there’s been no visible sign of the tumor for several weeks now. Last week, he said that the area felt firm to the touch; this week, he said it was soft. We didn’t ask whether that was a good thing, but assumed that it was. (I just poked the back of my mouth with my finger, and it’s soft, so I think we got that right.)

Next, we went upstairs to the infusion room for Paul’s blood draw. That’s where we met up with our friend Chris, who was in WA from the Bay Area to spend the 4th of July weekend with her family. (Chris wrote this guest post on Paul vs. the Squamous Monster right after Paul’s surgery.) Her first comment to Paul was, “Wow. You look GOOD.” And she’s right; except for the shiny red face, Paul looks like himself.

It was a beautiful, sunny day, so we sat outside to eat lunch. Chris had brought a picnic lunch for the two of us, and Paul had his lunch via tube.

This week, the med-onc PA Paul usually sees was on vacation, so instead we saw Dr. Renato Martins and his PA, Leslie. (Had Paul’s blood pressure not been low, we might have just seen Leslie, but I was impressed by Dr. Martins when we first met him a couple of weeks ago, so I was glad he was there, too.)

After Dr. Martins confirmed that all of Paul’s blood pressure readings that day had been done by machines, he got out his stethoscope and did an old-fashioned reading (twice). 80/50. While doing so, he noted that low blood pressure isn’t a disease, that he’d be happy to have a pressure that low. The issue was this was unusual for Paul. Paul’s blood sodium level was also low this week (128, with normal being 135-145 milliequivalents per liter), so Dr. Martins suggested that Paul might raise his salt intake slightly, especially as he’s being told to force fluids, which can result in low sodium levels. (Because of his CHF, Paul is always careful about his salt intake, and he’s getting more sodium than usual in the tube feeding formulas, but still likely less than the average bear.)

Dr. Martins and Leslie also looked carefully at Paul’s cheeks. Their concern was that the skin on his right cheek, in particular, might be nearing the point when it will “open up” and weep. (The medical term is “moist desquamation.”) Dr. Martins said that, in some patients, they might opt not to give the cetuximab this week, but that “as we’re going for a cure” (damn straight!) he’d recommend proceeding with the infusion. However, depending on the condition of Paul’s skin next Wednesday, they might hold the final infusion. We’ll see.

While Paul napped through his infusion, and a liter of fluids, Chris and I went out for a walk along the water. At the end of the infusion, Paul’s blood pressure was back up to 95/58. We went back to radiation oncology for Paul’s second zap, and then home.

That was countdown day 6. Since then, Paul’s had radiation on Thursday (radiation doesn’t stop for national holidays) and Friday, and two days off to rest.

Tomorrow is countdown day 3. The end of the final long Wednesday can’t come too soon.

paul side 2013-07-07

The halfway point.

Wednesday was Day 15 of Paul’s radiation treatments, which means that he’s now more than halfway through. But being halfway done means that there’s still halfway to go, and from here, that second half looks really long. Before we left for UWMC Wednesday morning, Paul complained to me, “I’m bored with this game. I want to play a different one.” If only it were that simple.

Instead, we played the usual long Wednesday game again, starting at 9:30am and finishing up around 4:30pm.

DetourThe radiation oncology department has started a remodel of their reception area. Instead of patients following fish, we all now follow detour signs, down a corridor lined with labs and offices, to a makeshift check-in at the small waiting area next to the vaults. A makeshift waiting room has been set up in what was once some sort of pediatric treatment room. (Along with the usual medical stuff on the walls, and curtain tracks on the ceiling, the walls are painted with cartoon sea creatures, as well as a deep-sea diver holding a small sign that reads “Get well soon.” Sweet.) Paul will be done with radiation by the time the remodel is complete, but we’ll see the new reception area when we return for follow-up appointments.

After Paul’s morning radiation, we hung out in an exam room while the rad-onc team of RN Shannon, nutritionist Sarah, resident Dr. Amarnath, and Dr. Liao took turns coming to us. At this point, we’re mostly discussing side effects and how to manage them. Here are the highlights (or lowlights, depending):

Paul’s weight was stable again, which made everyone happy. He had some nausea over the weekend, somewhat controlled by zofran and ativan, but none early in the week. The combo of senna and colace seems to have the constipation situation under control for now. Shannon asked how much exercise he’s getting, and suggested that taking a walk can help with both digestive issues and the fatigue he’s starting to feel. The skin on his face is redder, drier and more irritated. Also, the skin on his fingertips and heels has been splitting, and the corners of his lips, too. (Ouch!) Shannon suggested more moisturizing, which he can do as often as he wants anywhere but his face, and more fluids.

With Sarah, we went into Paul’s food and fluid intake in more depth. She takes careful notes each week, and reviews them with us for any changes the next week. Since last week, Paul has increased his tube feeding as the mucositis in his mouth has increased. He’s still trying to eat as much as he can by mouth; the magic mouthwash helps a lot (and also makes it easier for him to put in the oral stent for his radiation treatments). Swallowing isn’t painful; it’s having food touch the sores in his mouth that hurts.

Dr. Amarnath told Paul that he’s an easy patient, in that we’re not making them do a lot of work to get him through this. Seems that our medical knowledge, the research we do when we have questions, and our ability to figure things out for ourselves are outside of the norm. Sadly, last week was the end of Dr. Amarnath’s residency at UWMC, so we won’t see her again.

Dr. Liao looked at Paul’s face and neck, and told us that most of the blotchy redness we’re seeing is due to the radiation. However, he pointed out a few areas on Paul’s forehead and cheeks that he said are cetuximab rash, though very mild. He still thought that Paul’s skin was holding up quite well to the radiation. When he looked in Paul’s mouth, he commented, “it looks really angry in there,” but he said that there are no longer any clinical signs of the tumor at the back of Paul’s mouth.

Each one of the team asked Paul how much oxycodone he’s taking for pain; when told that he took a total of 15mg the previous day, they all said something to the effect of, “THAT’S ALL?” Paul has been unwilling to take more opiates until he figured out how to mitigate the resultant constipation, which was even more painful than the sores in his mouth. He seems to have gotten that mostly worked out, and as his medical team has reminded him that pain is not his friend, he’s been increasing his oxy intake so that he’s not playing catch-up with the pain.

Paul had chills and achiness the night after his last dose of cetuximab, so when we met with PA Yelena for Paul’s pre-dose lab check, he asked whether he might be developing an allergy. While allergic reactions are rare after the first dose, Yelena added an order for benadryl and steroid pre-meds just in case. She also told us that they don’t stop giving cetuximab due to mild allergies; that only happens when someone has anaphylactic or cardiac reactions.

Aside from taking a little longer because of the pre-meds, the cetuximab infusion went smoothly. Paul got in a good nap while I started to write this post. Then we were off to afternoon radiation, and home for the day.

Yes, I started this post last Wednesday, and it’s taken me so long to write it that we’re now only a day away from another long Wednesday. Paul’s not the only one who’s tired of this game.

By the way, if you have questions about anything we’ve written (or haven’t written), feel free to ask. I, for one, could use the writing prompts.

The first long Wednesday.


As Paul mentioned in his last post, Wednesdays are big treatment days: the morning and afternoon radiation doses bookend appointments with his radiation oncologist, Dr. Liao, his nutritionist, Sarah, his boy, Elroy (not really, just making sure you’re paying attention), and one of the med-onc folks (PA Yelena, or Dr. Baik), plus a blood draw, a PICC dressing change, and a cetuximab infusion.

So, yesterday would have been a long day even had Paul not spent most of the previous night dealing with unpleasant side effects of opiates (constipation) and antibiotics (diarrhea) dueling in his gut. Paul was definitely the loser in that battle. He didn’t sleep much, and when we left for UWMC at 9am, he was dehydrated and feeling nauseated.

After a blood draw at the chemotherapy infusion suite, we went to Paul’s morning radiation. In the waiting room, the white board showed Machine B as “on time”, and Paul’s pager went off right at 10am. After he came out from dosing, we had just a short wait before the doctor appointment.

We talked first with Dr. Liao’s resident, Dr. Amarnath, and Shannon, one of the radiation nurses. They got the story of the previous night’s gut wars. While they were concerned, they felt – as did we – that these weren’t radiation side effects, and suggested discussing with the med-onc team. They verified that he’s following protocol for oral and skin care, and asked if we had questions.

One question we had concerned the overall schedule for Paul’s radiation. When we first met with the rad-onc team, Dr. Amarnath told us that the typical treatment is five days a week for seven weeks, but Paul has appointments for only six weeks of radiation. Dr. Amarnath explained that, as Paul is getting a lower dosage of radiation twice daily, there might be fewer days to reach the total dosage. To confirm that, she took us to to look at Paul’s treatment plan.

At a computer monitor, she pulled up a set of multi-colored images, CT scans on which the team had colored in the important structures in Paul’s head, and mapped the radiation dosage to the tumor and the surrounding tissues. She explained that, while Paul’s PET scan showed no spread of the cancer, they are delivering some radiation to adjacent areas that they know from experience are the locations where this tumor would spread, were it to do so. The intensity-modulated radiation therapy (IMRT) they’re using allows them to control dosages much better than they could even a decade ago.


As Paul noticed, and Dr. Amaranth confirmed, the horizontal “slices” are taken looking UP from the ground, so the right side of Paul’s head is on the left side of the image. (After years of reading floor plans, I have a hard time making the mental shift to looking “up” at the image, so I mentally flip Paul into a headstand, and then look “down” at his chin. Works for me.)


In the corner of an image, Dr. Amarnath found a notation that the total radiation dosage was fractionated into 60 units; at two units a day, that’s 30 days, or six weeks. That means Paul will be done on July 10.  (It occurs to me as I write this that Paul has no radiation appointments on July 4, so he’s currently scheduled for only 29 days. We’ll have to check on that.)

When Dr. Liao came in to talk with us, he reviewed what we’d discussed with Dr. Amarnath and Shannon. He mentioned that, when devising Paul’s treatment plan, they’d also considered using proton therapy rather than IMRT, and had developed a treatment plan for that as well. While there were pros and cons to each, they decided that the cons (including skin toxicity) associated with proton therapy outweighed the pros in Paul’s case.

Dr. Liao asked Paul how his pain was, and Paul said that the pain at the back of his mouth had decreased since treatment started, so he’d been tapering his dosage of oxycodone, and hadn’t taken any pain meds (oxy or tylenol) for 10 or 11 hours (down from every 4-5 hours).

When Dr. Liao looked in Paul’s mouth, he got excited. He said that there is a visible change in the part of the tumor that’s on the surface at the back of Paul’s mouth, that it has decreased in size by at least 30%, and is much flatter. And this is after only two doses of cetuximab and four days of radiation; they usually get this sort of response halfway through treatment! Not only is Paul’s tumor responding to treatment; it’s responding quickly and dramatically. (When Dr. Liao left the room, we both got a little teary about that.)

We also asked Dr. Liao what type Paul’s tumor is. (I’d heard a couple of other patients discussing theirs in the radiation waiting room, and wasn’t sure what they were referring to.) He said that it used to be that most oral cancers were attributed to smoking and alcohol use, and were diagnosed in people in their 50s and older. Within the past couple of decades, however, oral cancers have become much more common among non-smokers and people under 50. These cancers have been linked to the human papilloma virus (HPV), the same virus responsible for most cervical cancer in women. (Just this week, actor Michael Douglas made the news for talking about HPV, his throat cancer, and oral sex. How timely.) HPV-related tumors tend to respond to radiation treatment better than tobacco-related tumors, so if you’re going to get oral cancer, this is the better type to have. As Paul is neither a smoker nor a heavy drinker, and was first diagnosed with oral cancer at 44, it may be that his cancer is HPV-related. Dr. Liao has requested that the tissue from Paul’s biopsy be tested for HPV, but hasn’t received the report yet.

(I remember finding something on the internet about the HPV connection to oral cancer back in 2004, and asking Dr. Futran about it, but there was little data available at the time.)

Next we met with the nutritionist. Paul has lost 7 pounds since the first of May, which ordinarily wouldn’t be a bad thing, but in the world of head and neck radiation treatment, that’s not good, especially so early in treatment. Paul’s appetite has decreased, and his mouth is becoming sensitive to acidic foods, so he’s been eating less. But, as Sarah reminded us, he’ll burn more calories while he’s in treatment, so he really needs more calories now than he was before treatment. While Paul has been using the feeding tube to supplement fluids, he hasn’t used it for food, but we agreed that it was time to get that going, so Sarah called in the order for the supplies, which were delivered last night.

And that was our morning. In the 90 minutes between morning and afternoon appointments, we found a nice spot to sit outside and enjoy the unusually lovely weather we’re having. I ate lunch. Paul ate one cracker, felt worse, and put his head down on the table for a rest. That’s when I took the photo at the top of this post.

The only items of note from the afternoon appointments were: Yelena told us that Paul’s white cell count is up a bit (what’s up with that? we don’t know); Paul got a big bag of IV fluids, half an Ativan (for nausea), and a good nap along with his dose of cetuximab; and his radiation date with Machine B was less than (the already usual) 45 minutes late.

So, did you get the takeaway for this post? I know I buried the lead, so here it is again: Paul’s tumor is responding quickly and dramatically to treatment.

p.s. I realize there’s some radiation background we haven’t given you yet, but the way-back machine was out of service today. Later.

At the SCCA.

Last Thursday, Paul and I spent most of our 15th wedding anniversary at the Seattle Cancer Care Alliance (SCCA). The plan was for Paul’s treatment to take place at the UW Medical Center (UWMC), so what were we doing at SCCA?

Before I answer that question, let’s take the way-back machine about a month into the past for a little catch-up…

The Monday after we got back from Houston (April 29), we met with a medical (chemo) oncologist, Dr. Christina Baik, at UWMC. She confirmed what Paul had learned through some web searches, that the two drugs used to treat oral squamous cell carcinoma are cisplatin and cetuximab.

Cisplatin is a long-time stalwart of the chemotherapeutic armamentarium. Paul’s uncle was treated with it in the 80s for a brain tumor, so Paul knows that it’s, as he puts it, one of the most “puke-tastic” drugs ever developed. It has a variety of debilitating – and sometimes permanent – side effects, including neuropathy, kidney damage, hearing loss, and bone marrow suppression. Paul already has some peripheral neuropathy from the CHOP chemo cocktail he got in the 80s, and losing any more finger sensitivity and dexterity would not be good.

The other option, Cetuximab, was just a dream back when Paul was getting chemo in the 80s. He remembers reading about the marvelous research starting into what were called ‘monoclonal antibodies’, and thinking how cool it would be to get one of those. Now here we are, living in the future: cetuximab is a monoclonal antibody drug, approved for treating Paul’s type of cancer in 2006.

Cetuximab (the ‘-mab’ ending indicating that it’s a monoclonal antibody) is not really chemotherapy, in that it’s not a poison. However, it does have side effects, the most common of which are an acne-like rash, and flu-like and lower GI symptoms that suggest you wouldn’t want to use it for fun. However, a small percentage of people have severe allergic reactions, especially to the first dose, so benadryl is typically administered before the drug.

But, we learned from Dr. Baik, the role of chemo for treating Paul’s cancer is secondary. The drugs are used to “soften up” the tumor, improving the effectiveness of the radiation treatment, but are not curative on their own. So the real question was whether Paul could be given enough radiation to zap the tumor without damaging all the important stuff around it too badly. The radiation oncologist decided that he could (more about that later), and the tumor board decided radiation with cetuximab was the best treatment option for Paul.

Now let’s skip forward two weeks, as preparations for Paul’s treatment were beginning…

On Wednesday, May 15, Paul had his radiation mask fitting at UW. After the fitting, it takes about two weeks for the radiation folks to get everything ready for the first treatment. And, since the protocol is to give the first dose of cetuximab one week prior to starting radiation, the rad-onc folks coordinate with the med-onc folks, and med-onc sets up the appointments for the drugs, and in Paul’s case, for the insertion of the PICC line that will be used to administer the drugs. So when Paul and I flew east to New York City on Thursday, we were expecting a phone call to confirm scheduling for the PICC and the first dose of drugs. The call didn’t come while we were in NYC. There was no voice mail when we returned home. Monday passed with no call.

So Monday evening, I searched the internets until I found a phone number on the UW website for Dr. Baik’s assistant, whose voice mail message revealed him to be an academic department assistant, not a medical assistant. But on his message, he reeled off the names and numbers of nurses to call if one was, in fact, the patient of one of physicians for whom he works. I called and left a long, tense voice message for Karen, Dr. Baik’s nurse, detailing Paul’s name and his patient number and the start date for his radiation treatments and what we needed from medical oncology this week in order not to delay his first radiation treatment next week and all of our phone numbers and please to call first thing tomorrow morning. (And I got through it without crying, which is what I tend to do when I’m angry that people are not taking care of Paul the way that they should.)

Karen called back the next morning, and told Paul that my message was the first she’d heard about this, but that they could schedule him to get his drugs at UWMC on Wednesday. He reminded her that he needed a PICC inserted before he could get his first infusion, and that he’d been waiting for almost a week to hear from them about scheduling it. She apologized, saying that someone had obviously dropped the ball. And she got to work, and called back shortly with a PICC appointment for Wednesday, and a whole slew of appointments for Thursday, but scheduled at SCCA, because they only do cetuximab infusions at UWMC on Mondays and Wednesdays.

Paul’s six (!) appointments at SCCA – patient registration (because he has never been to SCCA), blood draw, doctor visit, pharmacy tech, PICC dressing change, and infusion – were scheduled with plenty of time in between, apparently to allow for each one to run late without affecting his ability to show up for the next one on time.

After the blood draw, made easy by the new PICC, we headed upstairs for Paul’s noon doctor appointment. First in was Nurse Karen, who apologized again for the ball-dropping, and gave Paul his 3/4-inch-thick SCCA Patient Care Manual. Directly below the title are the words Knowledge is Power. Indeed. On the first page of the manual are the phone numbers and email addresses of important med-onc people. The rest of the manual appears to be undergraduate level reading, less useful for us than for newcomers either to Seattle or to cancerland.

Next Dr. Baik came in, and let Paul know that his bloodwork looked fine for the infusion. She told him that his first infusion would be a loading dose, double the usual dosage, and that future infusions would be half as much. As Dr. Baik left, she told us that the pharmacy tech would be in shortly for the “patient education” session on side effects and their management.

When pharmacy tech Kathy showed up, her first question was, “What do you know about the drug you’re getting?” Really? What kind of question is that? Paul responded, “A lot.” And things got worse from there. We already knew most of what she told us, but she presented the information in a way that didn’t allow her to gauge that. Also, she downplayed the rare cardiac side-effects in a way that led Paul to comment that those 1% are real people, not just numbers. The kicker was when she pulled out a prescription for meds to combat possible side effects: Zofran, in case of nausea; minocycline, an oral antibiotic to treat the rash; and Cleogel, a topical treatment for the rash. She explained that Cleogel is clindamycin… and Paul snapped, “I’m allergic to clindamycin.” Ironically, it gives him a rash. And, yes, the allergy was in his chart. She left the exam room to verify that Cleogel really is clindamycin; when she returned, she apologized, and handed me the scrip form with the Cleogel scratched out. (Dr. Baik also apologized via email the next day.)

Next, we stopped to visit with the scheduler, Keegan, who was trying valiantly to arrange Paul’s future infusions and associated appointments so that they played nicely with his radiation appointments at UWMC. This was more difficult than one might imagine; in the end, no two infusion days are scheduled the same. Might the scheduling have been simpler had it been done a week earlier? We’ll never know.

After getting his PICC dressing changed, Paul checked in for his cetuximab infusion. The receptionist gave him a pager, which buzzed a few minutes later. A nurse took us to one of the infusion “suites”, a small room with a hospital bed and recliner. Paul chose the recliner. I took the rolling doctor’s stool and table. The nurse hooked up the infusion pump to Paul’s PICC, dosed him with benadryl and steriods, and then started the cetuximab. Paul watched a movie on his laptop and dozed a bit. (The benadryl made him sleepy.) I did some work, wrote a bit, read a little. And two hours later, he was done.

paul infusion 1a

And he felt fine. No nausea, no difficulty breathing, no heart attack. Whew. It was, as we’d hoped, a non-event.

By the time Paul was unhooked and released, it was almost 7:00 pm, too late to catch the movie that we’d planned to see. So we went home, snuggled with each other and the cats, and had a quiet, uneventful evening.

We’ve had happier anniversaries, but we’ve had much worse days in cancerland. The day could have been worse, and we’re thankful it wasn’t.

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.

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.