Author Archives: Kimberly

The waiting room all over again.

Posted on by

Because we wrote extensively about Paul’s cancer and surgery in 2004, I can go back and read what I was thinking and feeling then. But I don’t have to read the old blog to remember the hours I spent waiting (and worrying and hoping) while Paul was in the operating room. It was – literally and figuratively – one of the longest days of my life. However, the caring and support I felt from family and friends enabled me to get through the day more easily and calmly than I had imagined possible.

In less than twelve hours, I get to do it again. And I would love your company while I wait.

Like the last time, I’ll be at the UW Medical Center tomorrow from 5:15 am (when Paul checks in) until some time in the evening (about 9:30 pm in 2004) that he’s moved from recovery to the ICU and I can see him and hold his hand for a while before going home. For most of those 16+/- hours, I’ll be in the surgical waiting room.

Please drop by, if you have time. Bring a hug, and a good story. (In 2004, I asked for chocolate, and had enough at the end of the day to last for Paul’s entire hospital stay. This time, I’m bringing the Hershey’s kisses that Paul’s sister Vanessa sent us, and the dark chocolate-covered macadamia nuts we brought back from our quick getaway to Hawai’i, so we may have enough.) Meet my mother, if you haven’t before. (Last time around, I wrote, “Meet my parents.” I’m so glad Mom is here… and I am missing my Dad something fierce.) Let me beat you at a game of Qwirkle. If the weather is like today’s (which it’s forecast to be), join me for a brisk walk in the sunshine. Stay as long as you like.

(Because I’ve done this before, I copied the directions to the surgical waiting room from the last time. However, I couldn’t keep myself from editing them. Anyway, the surgical waiting room is on the 2nd floor, off a long passageway that connects the main building and the surgical pavilion. If you come in the main hospital entrance, turn left and go to the Cascade elevators. As sometimes happens in buildings built into hillsides, the main entrance is on the 3rd floor, so take the elevator down to 2. When you get off the elevator, turn left, then turn right at the corridor. You’ll see the waiting room on your right. If you park in the surgical pavilion garage, take the elevator to the 2nd floor. When you get off the elevator; you’ll see the skybridge to the main building. Walk that way; the door will be on your left.)

If you’re far away, or have a full day planned, or just can’t bear hospitals, I understand. (There are days when I can’t bear hospitals, either.) I’ll have my phone, my laptop and a wifi connection, so you can call or text or email me if you want to check in any time during the day.

Whether delivered in person, telephonically, electronically, or through the vibe-o-sphere, I’m counting on your love, good thoughts and well wishes to help me get through the day.

Change of date.

Posted on by

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.

I wish.

Posted on by

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.

Live blogging the last long Wednesday.

Posted on by

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

The penultimate long Wednesday.

Posted on by

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

Countdown: Day 10.

Posted on by

As of yesterday, Paul had received 2/3 of his radiation treatments. You may remember that he’s scheduled for 30 days of radiation treatments; he finished his 20th day yesterday. Only 10 left to go. At this point, I’m counting down ’til he’s done, so this was radiation countdown day 10.

paul and the puffer-sI’d planned to take photos of Paul regularly during his treatment, but it’s been five weeks since I took this photo on our anniversary, and the first long Wednesday shot doesn’t really count.

So today I took his pic while we were waiting for his afternoon radiation in the temporary construction waiting room. (Paul’s the one on the left.) While the color rendering in this iPhone photo is off, Paul’s cheeks are redder than they were even a week ago, both from the radiation and the cetuximab rash.

He’s still awfully cute.