Category Archives: Side effects

An unplanned detour.

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Kimberly and I have been slow to get updates out, but, after being home for a week, I have spent most of the last week back in a bed at the UWMC. We’ve been working to understand and treat some problems I’ve had in recovering from my surgery on the 25th.

(According to Dr. Futran, the surgery went very smoothly, and everything from the neck up has been healing right on schedule. More on that later.)

We had a follow-up appointment with nurse practicioner Carol Stimson at the otolaryngology clinic last Tuesday afternoon. The original plan for that appointment was to check how the reconstruction in my mouth was healing, remove the stitches from my face and neck, and pull the staples from the incision on my leg. But, as we were getting ready to leave for the hospital, it was clear to both of us that I was in no condition to just get a few stitches clipped and turn right around for home. We know enough to know that we needed the resources of medical professionals and probably a hospital stay to get me straightened out.

When I went home from the hospital a week after surgery, my weight was up ~25 pounds from the fluids I’d been given during surgery and after. Despite multiple doses of Lasix at home, I wasn’t losing the water weight. In fact, I seemed to be worse, and in alarming ways. (When fluid starts weeping through the skin on your swollen feet, something has gone badly wrong.) And, oddly, while my left arm and hand had returned to normal, my right arm was still swollen.

As it turned out, Carol agreed that going back into the hospital was the right thing to do. After clipping stitches and pulling staples (ouch!), she made arrangements to admit me, and rolled me in a wheelchair from the oto clinic up to a room just down the hall from where I was after surgery.

One advantage of being admitted to the hospital is ready access to the tests that we needed to help understand what was going on. Within hours, I had a wide array of blood chemistry tests, and an echocardiogram and a chest x-ray and a scan of my right arm. Another advantage is ready access to whatever specialists I might need to address what we found. In my case, the appropriate “specialists” turned out to be the “medical team” – internists who, in a hospital setting, deal with non-surgical, non-emergent issues like mine.

I had the echo because of my history of cardiomyopathy. Fluid retention is a common side effect (though not usually for me), so they wanted to check my heart function. There is some suggestion that my heart is not pumping as well as before – an ejection fraction of 25-30% as opposed to my longstanding 35-40%. (Normal is 50%.) What we don’t know is whether that is a cause or effect of all the fluid – maybe a little of both. Personally, I am inclined to think that when I’m not trying to pump 25 pounds of extra fluid around my body, my heart function will improve.

To get rid of all the fluid, my internist, Dr. Narayanan, has given me increasingly large doses of IV Lasix; it took 80ml 3 times a day to get me to the desired net fluid loss of 1.5 liters per day. (Yesterday I hit 1.9 liters! That’s 4 pounds… and a lot of peeing!) Pushing that much urine out of one’s body can mess up kidneys and blood chemistry, so they’ve been carefully monitoring both. So far I’ve only needed a little potassium each day.

The ultrasound of my arm showed a small blood clot at the site where I had a PICC line following surgery. This is highly unlikely to have life-threatening implications, since small arm clots don’t tend to break off and go to hearts or lungs. Treatment involves twice-daily subcutaneous injections of Lovenox for 1-3 months. I’m not amused, but it is what it is.

This morning, I weighed 71.8 kg (158 pounds), down from about 80 kg (177 pounds) when I was admitted. Today they switched me to oral Lasix, to be sure it would keep things moving. It seems to be doing the trick, which means I’ll probably be discharged tomorrow, and can finish getting back to my pre-surgery “dry weight” of 152 pounds at home.

False Summit.

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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.

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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.

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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.

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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.

Countdown: Day 10.

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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.

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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.