Countdown: Day 10.

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.

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.

Welcome to the Working Week.

When the last two posts coincidentally had musical references, I told Kimberly that the next post didn’t need to have a musical link. That said, as I think about writing a post to capture how I’m feeling right now, and sum up the activity this week, I’m recalling the lyric of the Elvis Costello song in the title:

Welcome to the workin’ week.
Oh I know it don’t thrill you, I hope it don’t kill you.
Welcome to the workin’ week.
You gotta do it till you’re through it so you better get to it.

It’s hard to comprehend that just two weeks ago tonight I was in New York City. Since then I’ve had three teeth extracted, a PICC line inserted, my first dose of cetuximab, a PEG tube inserted, final measurements and films taken for radiation, my second dose of cetuximab, and two days of twice-daily radiation treatments, four sessions in the machine, total. (And yes, I do owe you a post describing that particular sci-fi medieval scene.)

I’ve not only started the treatments, I’ve started the treatments FOR the treatments. I’ve started showing the first signs of the cetuximab side-effect rash, so I’m applying hydrocortisone cream and slathering myself with moisturizer. Also to fight the rash, I’ve started taking minocycline, an antibiotic, and tonight I started the omeprazole that we hope will help me tolerate the effect the minocycline has on my stomach. On my way home tonight, I bought a fresh tube of the low-irritation toothpaste I use, which is recommended for dealing with radiation mucositis, and I’ve been regularly swishing my mouth with the buffered saline rinse Kimberly made up using the formula from the radiation clinic.

I’ve also been preparing for the upcoming weeks on the job. After a Costco run, I now have a good supply of nutrients to go down the PEG tube. Since the physician assistant at SCCA suggested it, I grabbed a few liters of coconut water, which she says can be used to flush the PEG tube while providing a good balance of electrolytes. I picked up the mega-box of hydrocortisone ointment, in case this rash gets bad. And I priced the cost (astonishingly cheap) of another computer monitor for the office, in case we needed to augment our ability to have Kimberly working at home sometimes.


I wrote the paragraphs above on Friday night, as I was winding down. Shortly after, I went to bed early and slept for a long time. Today, Saturday, I’m feeling even more like it’s the first weekend after starting a demanding new job – I’m worn out, and feeling really tired. Except for a blissful period early this morning, snuggled in bed with Kimberly and our cat Sergei, when all the various treatments and side-effects were in synchronous balance, I’ve felt pretty crummy today. Today I’m noticing the first problems with my appetite, and I’m rediscovering what it feels like to force yourself to eat. (This led to some adjustments in this afternoon’s list at the supermarket. I was interested to see that Pepperidge Farm has greatly expanded the Milano cookie line since the last time I was forcing calories. Double chocolate seemed like a good start.)

All of which is a long way of saying we’ve really started treatment now. I can feel, in a visceral way I haven’t up until now, just how badly this is going to suck.

Intellectually, I’m sure that if I can get some real food and liquids in me this evening, I’ll start to feel better, and another night of sound sleep will help. Tomorrow I’ll mostly take it easy, and work on recovery. And then Monday we’ll start again.

Next week we’ll start the regular pattern: two radiation sessions a day on Monday and Tuesday, then the big day Wednesday, with both radiation sessions and a cetuximab infusion, plus appointments with the rad-onc doctors and the nutritionist and the med-onc nurse. “Just” radiation twice each day on Thursday and Friday. The working week.

But worrying about that can wait until later. Right now it’s Saturday night! (S-A-T-U-R, D-A-Y, oh, never mind. Not another musical reference.) Time to go see about that ‘real food and liquids’ bit. Kimberly’s cooking dinner, and I’m actually feeling a little bit hungry.

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.

Gettin’ PICC-y wit it.

During what I now think of as my undergraduate thesis work in the Hero’s Journey, I had a lot of toxic stuff injected into my arms. The chemo regime that we used against my lymphoma in the 80s involved regular injections of chemicals that actually came in bags bearing big ‘BIOHAZARD’ stickers. And I had round after round of such injections. As a result, my veins are a mess, a network of vessels that are scarred, or shrunken or blocked, or otherwise hard to deal with. Nowadays, I count myself lucky if I can get even the most routine blood draw with only one or two needle sticks, and lab techs sometimes spend 15-20 minutes prowling my arms, using warming cloths and other tricks to find a usable vein.

Which is why I had an appointment on Wednesday for the insertion of a PICC line. A PICC is basically a long, flexible tube that gets inserted into a big blood vessel in an upper arm, and threaded up until it empties in the chest near the heart. It can be fastened in place for an extended period of time, and the external end has a plastic fitting designed to mate with syringes. It can be used both to inject drugs and to take blood samples. Which means no needle sticks required until the PICC gets removed weeks from now. YAY!!!

Back in the 80s, I had an ancestor of the PICC inserted when my veins ran out before my need for chemotherapy. At that time I had a ‘Hickman catheter’, which served a similar function, but was much more problematic. For one thing, it required a surgical procedure  to place, and for another, it required daily maintenance injections of the anti-clotting agent heparin, which I had to do myself in sterile conditions.

Insertion of the PICC was much simpler. It happened in a regular hospital room on the “Special Procedures” floor. The process was handled by one quiet and competent RN, Claudette. There was much draping of areas, and unfolding/upackaging of sterilized kits, and masking of everyone in the room, and slowly, in calm workmanlike fashion, it was done. No pain, nice and quiet, routine. The way you like to have procedures go.

A short trip to the radiology department for a chest X-ray showed that the end of the tube had taken a short detour the wrong way, so the PICC nurse came down and applied an easy fix, which was confirmed on another x-ray. I was good to go.

I now have a bit of plastic stuck by adhesive to the skin of my upper arm that holds the tube in place, and the outer end protrudes a few inches with a fitting on the end for syringes or IV tubes to screw into. There is a clear plastic bandage like sticky Saran Wrap that covers the plastic bit and the end with the fitting sticks out from that. I get a niffy elasticized cloth sleeve that slides over my arm to cover and also keep the dangly bit from getting in the way or caught on anything.

The best part is that the bandage only needs to be changed once a week, and the tube only flushed once a week. I have infusions once a week. Voila! It all gets taken care of at the same time, by professionals, and all I have to do in between is keep it dry and undamaged. Yippee!

(I have a couple of iPhone photos I took to show you how it looks, but they seem to be lost in some void between mail servers at the moment, and I’m too lazy to chase down the cable to get them off my phone in the ‘old-school’ way right now. They’ll show up eventually.)

The “Just The Facts, Ma’am” Post.

Kimberly and I have been working on well-written and highly informative blog posts to bring you up to date. But they are just not coming together, and given the fact that the weather in Seattle this weekend is amazingly beautiful, they likely won’t be ready soon. But we’ve gone way, way too long without an update, so here’s a quick and dirty summary of the news since the last post.

Kimberly’s father, Tom McKittrick, died. So we’ve both spent time in Houston dealing with that.

When we got back, we had the appointments with med-onc and rad-onc. I also had a PET scan. The PET scan showed that we have three cats and six chickens. (Sorry, couldn’t resist.) Actually, the PET results were that the only active cancer in my body is the stuff we know about in the oral cavity. No need to worry about my lungs and/or any lymph nodes in my neck.

My case was discussed at the UWMC Tumor Board, and the plan is to treat me with a combination of modern, high-tech, computer-guided radiation and chemotherapy, which, while grueling, will have less chance of leaving me with further permanent impairment in speech and swallowing. (I say permanent, because I’ll be getting a feeding tube, because the rads and the chemo will temporarily trash my mucous tissues in my mouth. I did say grueling, right?)

Treatment will last 8 weeks, with a weekly dose of drug and doses of radiation 5 days a week. Before we can begin, there will need to be multiple appointments to do advance dental work including likely extractions, to place the feeding tube, and to get the PICC line that they’ll use for the injections. (The aluminum-foil lining (not quite silver) is that we’ll be able to go on the quick trip to NYC I was hoping to make this month, before I’m too deep into the battle.)

More details and descriptions to follow, but not right away.

Yesterday was such a gorgeous and perfect day in Seattle that it almost made me cry. We have really needed a break, and we were given one. Kimberly and I had lunch outdoors at the Fisherman’s Terminal, and went for a long walk through the neighborhood, and drank delicious limonadas on the patio of our local Cuban-influenced café next to the bookstore. This is the kind of weather that makes me happy to be outside giving the chicken coop its spring cleaning. I am quite consciously and enthusiastically enjoying the gift of these days, storing them up to balance the very crappy ones I know are just a few weeks down the road.