Category Archives: Radiation

The Scan.

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This Friday, I have my first post-treatment CT scan. The appointment with Dr. Liao to go over the results will be Monday morning.

The purpose of the scan is to see what’s currently happening at the tumor site. We’ve had to wait two months since the end of treatment to allow my mouth to heal up enough that the scan wouldn’t just show the tissue damage from the treatment itself. We’re now at a point where what shows up on the scan should be meaningful. This is really our first chance (beyond Dr. Liao’s observations early on) to see whether the treatment worked.

Am I nervous about this?

Hell, yes.

My coping mechanism for dealing with the anxiety mostly involves focusing on other things. I’ve gone back to work, which helps by giving me a big list of complicated things to get wrapped up in. There are all sort of household chores and mini-improvement projects I can throw myself into, and I’ve been doing that with increasing intensity. And I’m still recuperating, so making sure I’m getting enough calories and rest still takes conscious effort, and keeps me from obsessing (much).

At other times, I try to calmly consider how the site feels. There’s some pain when I open my mouth wide, but that’s quite likely due to expected muscle tightness from the radiation. There is some other lingering soreness at the site, but most of the healed tissues in my mouth are still sensitive, and you’d expect that spot to be the worst.

Still, as the date of the scan gets nearer, I find myself feeling increasingly anxious. And this coming weekend, between the scan and hearing the results, will be pretty tense.

What I want to hear, obviously, is that the scan shows no sign of disease, so the treatment definitely worked, and I can go forth to continue recuperating and begin a series of regular monitoring appointments. Yippee!

What I’m afraid of hearing is that the scan shows some sign of disease, so the treatment was not completely successful, and we’ll need to plan the next steps. I haven’t spent much time thinking about where this might lead, because there are too many unknowns, but it keeps popping into my thoughts. Surgery? Probably. Not good stuff? Definitely.

I’m also worried about the third option: ambiguous results. I’ve looked at enough scans to know they are hard to interpret and don’t come with special color coding on abnormal tissue that clearly indicates “radiation scarring” or “cancer.” I really hope that we don’t end up with this. I really want to know something on Monday.

Good wishes, prayers, visualizations, crossed fingers, etc. are hereby shamelessly requested.

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

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.

The Neutron Dance.

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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.

IMG_0266IMG_0264

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

The first long Wednesday.

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IMG_1854

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.

IMG_1850

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.)

IMG_1851

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.

Welcome to the Working Week.

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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.