No News is not Bad News.

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

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

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

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

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

False Summit.

In my past endeavors as a long-distance runner and cyclist, one of the challenges I encountered was climbing hills that had a “false summit”. Every so often, you come upon a long, difficult, steep climb, where you work really hard to get to the crest, only to discover that what you thought was the top is only a change in the slope, and the climb continues for some distance after. There you are, reaching the point you’ve set your sights on, and you discover that it’s only partway to the actual finish, and there’s a lot more work ahead.

The time since the end of treatment has felt a lot like that.

For one thing, no matter how often and how earnestly they tell you that effects continue to worsen for up to two weeks past the end of treatment (oh, and by the way, thanks so much for burying that information in week 5 of treatment, guys), the real meaning doesn’t actually get across. What they mean is that they are giving your body so much punishment, it doesn’t all actually fit in to the treatment period. There’s a backlog. Just when you’re “done,” you really get worse.

(I will admit to wondering, in my darker moments, whether the intention is that the patient experience this part of the process when they aren’t scheduled to be in close proximity to those responsible for it, out of concern for the providers’ safety, or whether they figured that making patients also have to deal with going to appointments is just too much.)

Tissues that were already inflamed became more so. Areas that had not previously felt dry or painful started to. Problem spots in my mouth got more numerous and painful, to the point that eating anything by mouth became impossible. Saliva and phlegm got disgustingly thick and ropy. Everything bad turned up to 11.

So we’ve turned up our response as well. More applications of Aquaphor. A humidifier for the bedroom. In an effort to control the phlegm and get control of my fluid balance, I stopped using the relatively high-sodium, milk-based prepared formulas in the PEG, and switched to juice-and-protein-powder mixes of our own devising. Kimberly found a rice protein powder that mixes smoothly, and delivers a lot of body-rebuilding goodness.

I’ve even upped my dosage of painkillers, though I expect to still surprise the medicos.

All of which seems to have worked. I’ve now made it almost two weeks, day by day, night by night. I think I’m at a point where nothing is getting noticeably worse, and several things have started to get better, slowly, from their worst points. I think.

Or maybe I’ve just hit the worst kind of false summit. Sometimes, due to optical illusions and local effects, the road appears to have gone flat, but in reality is just slightly uphill. You find yourself struggling more than you think you should, and you’re unable to understand why it’s so hard to keep going. Aren’t we on the flat now? What’s going on? I thought that was the top. Did the climb take THAT much out of me? It’s really demoralizing.

Overall, I’m clearly getting better, but I’m still in a place where some things seem to be worse, or just different, each day, so I don’t have as strong a sense of “Yay! I’m getting better!” as I would like. The recovery is hard work, and slower than I’d anticipated. Maintaining morale is tricky.

I know I’ll get through this; it’ll just take time and continued “turning the crank”. But if my life were on Tivo, I’d be hitting the button to jump forward through this section.

Live blogging the last long Wednesday.

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

Over the handlebars.

Those familiar with the Tour de France know it holds surprises, and can be transformed completely in a moment.

All it takes is a moment of inattention after days of fatiguing racing, or the slightest bad timing on an aggressive move by an ambitious rider, or some other random twist in a peleton moving at high speed, and in the blink of an eye the race leader finds himself upended in the ditch and a pile of riders and broken bicycles appears where just a moment before all was smoothness and speed.

Last night was one of those surprises.

How did it happen? Well, it was kind of late in the day. When I thought about whether to try pumping another can of formula through the stomach tube, I probably should have passed on the idea. But I didn’t eat well over the weekend, and I felt like I was “behind” on my calories.

And, despite the fact that my gut had been very well behaved all day, I probably should have followed my usual rule of thumb, and selected a slower feed rate since it was late in the day. But, as I said, it was late, and if I went slower, I’d have to stay up later, and so I didn’t turn the rate down until later, and it was getting pretty late.

Which is how I suddenly found myself upside down in the ditch.

Pumping formula through a stomach tube is NOT a natural way to get nutrition. As a result, there are some ways in which the body doesn’t handle it well – the body has some very fine and long-evolved autonomic responses for normal eating, and it can get quite bewildered by tube feeding.

They tell you that it’s important to remain vertical, or at least with your upper body inclined, during tube feedings and for some time afterward. This helps move the formula down the gut, and helps prevent it from burbling up through the top of the stomach and trying to come UP the pipe food normally goes down. This is particularly important when the stomach is full, because, say, you’ve just rapidly pumped a bottle of food, even if it is 11:30 at night and you are feeling very sleepy.

I fell asleep. I rolled over onto my side. I woke as food was not creeping, but shooting up the wrong way, and managed to rush to the sink before it came out. But at just the wrong moment, I unconsciously breathed in, and aspirated a bit of formula, ending up coughing over and over and over. (On the slow-motion race video, this is where you see the rider flying head first over the handlebars.)

The rest of the night was a long, semi-sleepless process of sitting up and trying to let my body sort itself out. What made it worse was that, after a couple of hours, I started experiencing chills and shaking. That was when I woke up Kimberly, and we called the on-call resident for advice.

The good news is that a trip to the ER was not required, and eventually everything worked itself out. By dawn, I was mostly back to normal, (except of course for the fact that I hadn’t slept very much, what sleep I’d gotten was sitting up, and I’d spent a lot of those “extra” calories on shivering.)

So I took it slow and easy today. I did make it to my morning and afternoon radiation, and following the second dose, got Dr. Liao’s new resident, Dr. Dhami, to check my lung sounds and vitals so that Kimberly won’t worry tonight. So now I only have two sessions (one day!) left. But last night was a lesson in not getting cocky, and remembering that it isn’t over ’til it’s over.

How I’m Feeling.

It’s a complicated mix.

I have two more days of treatment remaining. I’m confident that I can handle that, and get through it with energy and determination. On the other hand, if on Wednesday evening, I’m not asked to go up on the podium to don the ceremonial jersey for winning the “King of the Radiation” competition, I’m going to feel disappointed. (No, I don’t know what color that maillot would be… glow-in-the-dark green? Bright red to match my face?) In case the race officials have fallen down on the job, I am planning on wearing suitable gear Wednesday, shown below. Bloo

(If you want your own shirt, or hoodie, or a pin like the one Kimberly’s been wearing, go to stupidcancer.org, an organization for young adults with cancer.)

It’s not like I’m coasting to the finish, either. Part of me is starting to worry that my face will actually fall off before Wednesday. I’m amazed by the changes in my skin. The rad-onc folks gave me tubes of Aquaphor Healing Ointment as moisturizer; it’s this wonderful stuff that’s almost half petroleum jelly, with glycerin and several other gooey, waxy, emollient substances. It’s THICK. For weeks now, I’ve been coping with the minor annoyance of reaching up to scratch a momentary itch on my face and coming away with my hand covered in goo. It goes on, and it sits there, and doesn’t evaporate. So it is really amazing to me that I’ve gotten to a state where it seems my skin absorbs it all, and I need to apply another coat regularly. How is that possible?

I suspect it has something to do with the elves. When I look at my face in the mirror to reapply the Aquaphor, I see that the skin on my cheeks has been cunningly replaced with leather from an old suitcase. Where the elves are taking the old skin and the Aquaphor I don’t know, but the ways of elves are mysterious. I just wish they’d leave it alone, because all that mischief leaves my face feeling itchy, and hot, and quite uncomfortable.

It’s the doctors I blame for my nasal passages. Despite frequent applications of saline spray, and delicate applications of Aquaphor-laden Q-tips, the linings of my nostrils are dry, cracking and gently bleeding. No, it is not pleasant. It ranks up there with the rapidly increasing chapping of my lips for most-annoying trivial side-effect.

Fatigue has also bumped up another few notches. I want to sleep all the time. Granted, a fair portion of that is due to the anti-queasiness meds, and the painkillers, and the pain that evades the painklillers, and the daily caloric intake challenge. But deep down my body is working very hard to withstand some very powerful assaults, and I’m feeling it. I’ve started taking advantage of the fact that, with the stomach tube, I can be eating and sleeping at the same time, and have had a couple good naps while pumping food in.

Emotionally, though, I think I’m in pretty good shape. I will admit to being pretty cranky about this whole “effects continue to build after the end of treatments” scam, though. While I understand the process intellectually, it hardly seems fair that my face will still be trying to fall off next week. I’m really eager to be in the “I’m feeling better today” phase. I spend a far amount of my awake time thinking about the projects I want to get to, and meals I’m looking forward to enjoying once I’m again in a condition to do that. (I am, however, also reminding myself that it’s going to take longer to get there than I would like.)

That is where I anticipate the next big challenge. When I’m healing, but it isn’t going fast enough, or is unpredictable, or spotty. That will take some work.

But first, I have to ‘make it to the podium’ on Wednesday without my face falling off. With my weight stable and my systems all functioning, and all my meds in the proper dosages and plenty of sleep, and fluids, and everything else.

So that’s what I am focused on now.

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