Beating the Heat.

The Pacific Northwest is facing a string of high-temperature days (due to a high-pressure area hovering overhead, according to local weather expert Cliff Mass.) Temperatures on the eastern side of the Cascades will be in triple digits, but even in Seattle we can expect several days in the 80s and possibly into the 90s.

This is Not Good.

Even when I’m healthy, I don’t endure temperatures above 80 very well, and 90 is just bad. In part this is due to living in Seattle for long enough to have become a weather wimp; in part it’s because I’m on heart meds that interact with the normal physiological responses to high temperatures, like dilating blood vessels and increasing heart rate. In a normal year, when weather like this comes in, I spend a lot of time at my air-conditioned office, and visiting movie theaters, and that works.

This year, though, I’m even less capable of dealing with a week of high temperatures. I need to sleep, and I need to sit at home and pump food, and I already feel like crap. When the temperature in the upstairs of the house climbed up to 83 this afternoon, I realized something had to be done.

Which is why I’m feeling smug right now about having bought a small air conditioning unit at the end of last summer. A short while ago, I rolled it out of the ccoolerloset where it’s been waiting all winter, hooked it up, and now I’m relaxing in a rapidly cooling bedroom. The unit itself looks a little like the aftermath of a wild night between R2-D2 and a hotel room mini-fridge. Instead of getting permanently installed, it’s designed to be portable, and it vents through a hose attached to a fitting slid into a window opening.

This is Good.

I also invoked the special “cancer patient dispensation” rule I just made up for permission to move a TV back into our bedroom. We don’t normally keep one in here, but sometimes, allowances must be made.

Oh, and today was countdown day 9. And it’s Friday, so I have a couple days off before day 8.

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.

ABCD.

There was some good news from my appointments on last week’s Long Day. For one thing, it seems like my disease is still responding well to the treatment, though it’s getting harder to tell from just inspecting my mouth, as the mucositis sores are confusing the terrain. For another, my skin does seem to be holding up pretty well, and I’m not yet showing a really bad ‘sunburn’ effect. My cetuximab rash continues to be mild and not widespread.

Also, my weight was stable, after having been down a number of pounds last week. Stable is good. I was kind of hoping to weigh in a little heavier, but stable is OK.

That’s the good news. From here on, it’s complicated.

I’ve been trying to eat as much as I can, but it’s really hard. Obstacles include not just diminished appetite, but nausea, constipation, and, increasingly, mouth sores.

Tube feeding is helpful, but there’s a limit to how fast I can pump food in before my stomach rebels, so it’s slow going. So with everything, it’s tricky getting enough calories. But it’s critical, which is why I have adopted a new motto, based extremely loosely on a line from Glengarry Glen Ross – ABCD: Always Be Chowing Down. I figure if, whenever I can be taking on food or liquids, I am taking on food or liquids, I should succeed.

Optimus Prime, er, the Vitamix Pro 300

Kimberly has been a superstar, finding and concocting high-calorie and nutritious recipes for me, and doing a lot of shopping to prepare us for getting me fed.

In preparation for the days when I have to give up on mouth feeding entirely, we bought a very nice Vitamix Pro 300 blender, which we’ve already started using to purée soups. (The Vitamix is quite a machine. Standing on the counter, it looks like Optimus Prime compared to our ancient blender, which now looks like the claw from one of those pick-the-toy glass-box machines.)

We also came home from our last Wednesday appointments with a prescription bottle of “magic mouthwash” (yes, that’s the actual name on the scrip) to help deal with mouth sores. It’s equal parts benadryl, lidocaine, and maalox, which I swish in my mouth to calm things down. The benadryl is supposed to ease the inflammation, the lidocaine numbs everything up, and the maalox is there to make sure the mixture coats the surfaces well enough for it to work. Let’s just say I have no fear that it will become a popular street drug, but if sure helps when the growing sores along the inside of my lips are acting up.

So, we are well-prepared. Now I just need to perfect the technique.

Always. Be. Chowing. Down.

The Neutron Dance.

Whoa I’m just burning doin’ the neutron dance
I’m just burning doin’ the neutron dance

(OK. First thing, a physics lesson for technical accuracy. Despite my inability to resist the Pointer Sisters reference, I’m being treated with high-energy electrons, not neutrons. The University of Washington does happen to be one of three centers in the country that has a neutron therapy machine, and one of a dozen with a proton therapy machine, but I’m not using either. Please let’s keep our atomic particles straight.)

So, what is technically the electron dance goes like this: Monday through Friday, around 10am, I deliver myself to the Radiation Therapy department, which is deep in the basement of the UWMC. I check in with someone at the front desk. At this point, 14 sessions in, I no longer have to bother giving my name, and we just have a pleasant little chat while they enter me in the computer and hand me a little pager device, just like the ones you sometimes get at large restaurants. Then I go to sit in the cluster of chairs in the waiting area. Because we are in the basement, there is no cell signal in the waiting room, but there is usually enough time for me to connect to the patient wi-fi with my iPhone.

The pager goes off with a rather excessive combination of vibrating, beeping AND flashing red lights. That’s my signal to get up, deposit the pager back at the front desk, and begin the long walk back to the treatment area. The treatment machines are in rooms dug back into the hillside, at the end of a turning hallway. To keep patients from getting lost, they have artwork of salmon mounted on the walls along the way, and they tell you to ‘just keep following the fish’ until you get to the small waiting area right outside the treatment area.

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IMG_0263At which point, just in case you had missed the subtext, you notice that the rooms with the machines in them are referred to as “vaults”.

And they are behind foot-thick doors. Yeah, this is serious stuff, boys and girls.

When it’s my turn, I’m walked past a bank of control monitors and into the space with the actual machine, which looks not much different from a modern CT machine. That resemblance makes sense, because this is actually “image-guided radiation therapy”; the machine does a scan of my head each time so that it can adjust for small movements of my tissues.

Before I lie down on the table, I take off my shirt, and then have to insert my dental mouthpiece, called a “stent”, which was custom shaped for me during a visit to the specialist dentist weeks ago. It holds my teeth in a fixed position, and has a flap that holds my tongue out of the main path of the beams. It’s quite awkward, and getting it in and out requires opening my jaw wide, which hurts a bit. I can already tell that this will get harder as my mouth gets more sore.

Then I lie back on the table, making sure that the back of my head rests on the plastic cradle. The technicians (Ashley and Keith, usually) drop hand-hold pegs into a set position on the table for me to grab, so that my shoulders are in a particular location. Then they slide my mask on, and bolt it down.

IMG_0215 Oh, yeah, the mask. During treatment, my head is held stationary by a form-fitted mask, custom shaped to my head during my preliminary appointments. A flat panel of a plastic mesh was heated to malleability, then pushed down and molded to my face. As it cooled, it became rigid again. The blue border visible in this picture allows it to be fastened to the table, holding it, and me, in place. (Since I took this photo, they’ve cut eye and mouth holes for me, for what that’s worth.) I did say there was a medieval quality to this process, right? Foot-thick doors, bolted-on masks? Right.

The technicians make some final adjustments to my body’s position, using laser levels and the small spot they’ve marked on my chest, and then leave the room. After the door swings shut, the machine’s armatures do the first scanning loop around my head. There is a pause of about 30 seconds. Then the machine begins a series of movements and noises as the beam head moves to different positions and fires from different angles at my tumor. I normally just keep my eyes shut and wait for it to be over. The zapping process takes about 5 minutes. The effect of the beam can’t be felt, so I’m mostly just trying to stay motionless and to not think about the high-energy particles moving at relativistic speeds through my flesh.

The techs come back in, move the table back to the base position, and remove my mask. Then I can take out my stent, stand up, and I’m done. I put my shirt back on and head back down the hallway past all the fish, and it’s time to go home.

Then, about 4:30 in the afternoon, I go back and do it all over again. In between, I eat, and sleep, and take the drugs that help me get through all of this.

The treatment plan is a total of 60 sessions. I’ve now done 14 sessions; 46 more to go.

And that’s how my current ‘day job’ works.

I don’t want to take it anymore
I’ll just stay here locked behind the door
Just no time to stop and get away
‘Cause I work so hard to make it everyday
Whoo oooh, whoo oooh

This is where it happens.

Note: I wrote this piece on Thursday, and I wasn’t sure I wanted to share it. I think it may be hard for some to read. But I do want to capture the feeling and insights of that day, so I’m publishing it now. You should understand the setting is two days ago. Also, on Friday I was feeling better – still not great, but better.

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This. This place. This is the place where all that chatter about the “hero’s journey” shifts out of clever metaphor and into something gritty and real. This is where that ‘survivor’ thing really happens.

I feel like crap. Not death’s-door, can’t-lift-my-head-off-the-bed crap, but pretty bad. I was up essentially all night the night before last, often in pain, closeted in the bathroom trying to hang on as my intestinal tract moved from severe constipation to diarrhea through a number of awful phases, including one I described as “the uncontrollable urge to pass a brick.” Not only had the constipating and laxative side effects of my various medications not balanced themselves, they had teamed up to provide some truly awful experiences.

After 16 hours of that, exhausted, sleep-deprived, somewhat dehydrated, we began this week’s Long Day (rads, infusion and doctors appointments all day). The intestinal warfare had mostly ceased, leaving me only with a new feeling of nausea, which my anti-nausea drug wasn’t really helping. At least at the hospital, along with my cetuximab infusion, I was able to get some IV fluids, a dose of another anti-emetic and a nap, all of which helped. I was able to stomach a bit of rich soup for dinner and sleep a hard, deep sleep.

Still, today I am Not Good.

My intestines are still not back to normal, and I’m tired in that way you can get when your body below your sternum has been misbehaving for days. My appetite is off, so while I was finally able to eat something last night, it wasn’t nearly enough, and I wasn’t able to finish my breakfast this morning. I’m feeling more soreness in my mouth as the radiation adds up. My gut is playing a completely audible punk-rock-inspired art assemblage of gurgles and burbles.

I’m tired. I’m sad. I’m in pain.  I’d really like to just curl up in bed and retreat into a safe cocoon. I’d like to nap all day, and cry, and have a day off where I didn’t have to work hard at everything. I just want to quit playing this stupid game that isn’t any fun anyway, and be left alone.

But – this is The Place. This place – I recognize it. This is the place where what I do makes a difference. This is the place where little choices matter, and can have big effects. Here is where you could do one thing, which is what you really feel like doing, and which would be easy and comforting and you have every right in the world to do. Or you can do another thing that will be more difficult and not so clearly rewarding and probably not enjoyable in itself at all. (But, there’s that voice in your head saying it’s important.  (And maybe even Important.) And you get to choose.

And I have chosen. I’m not, much as I sincerely long to, going to curl up in a ball in bed. I drove myself to my damn radiation appointment, and on the way home stopped to buy some bread, in hopes that maybe I’ll be able to get down a piece of toast, and maybe that will help my gut even out. And I’m diligently chewing that toast down right now as I type, even though it hurts way more than it should, because I need the nutrition, and I’m hoping I can maybe get my guts to calm down before I start asking them to cope with PEG feedings.

And instead of going to take a nap, I’m going to be unpacking the boxes of PEG supplies that we had delivered last night, and getting them set up and organized so that maybe I can even try a first run later today, gut or not, because I really, really do need the nutrition, and I need to catch up after the last 24 hours.

And instead of taking time to freak out about how fast it feels like things are changing, and how rapidly I’ve landed in a place where I need IV fluids and supplemental nutrition, I’ll be mixing up some lysine powder in water to flush through my PEG, because that’s supposed to help with mouth sores. And I’ll be logging the toast I just finished (yes!) and the glass of whole-fat milk I had with it (yes!) into my food and fluid log, so we can keep track.

And, because I have the strength, I’m even going to do a load of laundry, because god-dammit I’m still a normal grown-up person who needs to have clean clothes to wear.

This is how we do it. Because even though I feel like crap, the little voice in my head has a good track record. Because maybe after I’ve done all I need to do, there will be time to do something more fun, like a nap. And if I’m lucky, my gut will calm down today, and I’ll get more fuel into the system, and I’ll feel better, in general, and if not, well, … then I’ll keep trying.

Because this is where it happens.

The first long Wednesday.

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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.

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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.)

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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.