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.

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.

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.

______________________________________________________________________________

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.

PEG. (It will come back to you.)

One of the enduring peculiarities of cancer treatment is the way it combines the most advanced modern science and great intellectual achievement with pre-human barbarity and heartless practical measures. One of the first times I encountered that was back in the 80s, when one of the chemo treatment regimes I had was called “leucovorin rescue.” In that technique, the patient is administered a lethal dose of a drug that chemically masquerades as a vital cell nutrient. Cancer cells, with their higher metabolism, greedily drink in the bogus chemical, and fall over dead when they try to use it, and then, to keep the rest of the patient from falling over dead, they flood the body with another drug which CAN be used as the expected nutrient, literally the antidote, and the good cells go on to live.

Another one of these high-tech barbarisms explains why I spent last night in the hospital.

Tomorrow I begin radiation treatments. Highly educated people have spent the last two weeks designing complex computerized targeting routines to drive an incredibly complex machine and align multiple beams of radiation with millimeter precision to destroy the cancerous cells in my mouth. That said, it is completely expected that this treatment will so trash the mucous membranes of my mouth that I will be unable to eat and perhaps not even drink, and I will have to continue in that state for weeks and weeks as I undergo daily doses of radiation.

But there is a well-established way to keep someone who can’t use their mouth fed and nourished for long periods of time. And, as readers of our previous cancer blog and those who knew us in 2004 know, we have a lot of experience with it. Following my 2004 surgery, it was months before I had learned how to swallow again. I spent most of that year getting my nourishment from a feeding tube placed into my stomach using percutaneous endoscopic gastrostomy, or PEG.

(Yes, Facebook fans, there was a reason I posted a link to a Steely Dan song that was going through my head yesterday. I was in the waiting room of the UWMC Digestive Diseases department trying to prepare emotionally for the process. That was no trivial undertaking.)

My memories of the 2004 procedure to place the PEG, and the adjustment to using it, rank among the most traumatic memories of my life. (Yes, that is saying quite a lot.) It was placed in the days shortly after my major head and neck surgery, when I was barely able to communicate, and I was on a variety of powerful drugs. The team in the Interventional Radiology department misjudged the interaction of the opiate painkillers I was on and the sedatives and anesthetic they were using to place the PEG. I was far, far too conscious, and in too much pain, but not able to effectively communicate that. I was also not thinking clearly enough to do much more than hurt, struggle and fail to be understood, and be afraid, imprinting a horrible memory for a lifetime.

Other bad PEG memories got logged later, when I was back in my hospital room. The summary of that experience is in the old blog. As we would later learn, my body, trained by years of healthy eating and whole foods, reacted badly to having highly synthetic feeding tube formula pumped into my stomach. That pain, combined with my tangled, drugged but painful memories of the placement procedure, and my memory that the death of one of my elderly grandmothers had been hastened by a misplaced feeding tube, started me panicking in the middle of the night. An awful, awful night, that was.

So, despite all my powers of positive thinking, and ability to self-coach and think of all that was different, I was having trouble staying calm while waiting to be called back for my procedure.

The good news is that this time around, the entire process went better, and went according to the plan. I got the tube placed late in the afternoon, then spent the night in a room at the hospital so I could be monitored, and they could check the tube in the morning before releasing me.

Of course it helped that I went into it fit and functioning, not recovering from major surgery. We were able to have a preliminary meeting with the doctors, resident Jarrad Scarlett, MD, PhD (!) and Dr. Kuver, from the Digestive Diseases team — the other team in the hospital that does PEGs. They listened calmly to my story, and showed great care in making sure that I’d have a better experience this time. They asked careful questions about how much pain medication I’d taken, and when, and even suggested that they could reschedule the procedure to have a full anesthesiologist available, if I wanted. I felt like I was in good careful hands. (And, though he appeared to be no relation to the Captain, I did feel that I could count on Dr. Scarlett to protect me from Mysterons.)

In the event, I remember being wheeled into the procedure room, and getting all the monitors hooked up, and not really anything after the nurse said she was starting the drugs. Nice. The other good thing about this time around is that we don’t actually have to start using the PEG tube yet. I’m still able to eat and drink by mouth.

The night in the hospital was also nicely routine. Kimberly left after accompanying me to the room and staying through the “clear liquid” diet I was allowed for dinner. After that I took a nap, and then awoke with a great idea. Normally when we are apart we call each other to say good night. But I had brought my iPad with me, and my great idea was that I could use FaceTime to talk to and SEE Kimberly. (Yeah, this idea would have occurred to my teenage niece in a split-second – I’m old. Sue me.)

Following a nice FaceTime chat, I went back to sleep, lulled to sleep as usual by the sound of the podcast of As It Happens from the CBC radio. I had a quiet night, and in the morning my PEG checked out OK. Dr. Scarlett came by and did some minor adjustments, pronounced it good, and I was able to go home. There is some lingering pain at the entry site, which will fade as it heals up and is no worse than the other parts of me that are hurting in my mouth.

Before we left, we met with the young woman who is the dietician representing the formula supply service, but I’ll skip those details until we start actually using the new tube.

So, the morning went great, and we had enough time to get home and recharge before returning to UWMC in the late afternoon for the “dress rehearsal” of my radiation treatments. Which will be covered in a later post, not tonight.

Meeting the Nutritionist.

Thursday we had an appointment with a nutritionist at the hospital. While it was not bad, and actually, it was kind of good, it still left me feeling grumpy and frustrated.

Part of that was the way it started. We had an example of the downside of getting treated in a big medical center with multiple specialties. The nutritionist I was supposed to see spends some time in the Cancer Center, which is where the radiation treatments happen, in the basement at one end of the hospital. That was where my appointment was supposed to happen. But, when I called the other day to ask where the appointment was supposed to be, they told me I should check in at the Surgical Specialties department, on the 3rd floor of the Surgical Pavilion, an addition at the opposite end of the hospital across a skybridge. After checking in and waiting 20 minutes in the admittedly lovely waiting room there, someone figured out the mistake and came to tell us we needed to go to radiation oncology. Grr.

When we got there and met her, we found the nutritionist herself was a nice young woman, and she escorted us back to a room for our interview. There we quickly learned that she was not, as we had been led to believe, the person who was going to be talking to us about the details of getting my feeding tube and what formulas we were going to be using. That will be someone else, who we’ll meet when I have the tube implanted. (So much for Kimberly’s having prepped and re-read all the posts from the last blog about the myriad problems we had with the feeding tube.)

No, this was the person who has the job of assessing my diet and nutrition skills, and will be monitoring my weight and food intake to make sure I get everything I need during the course of treatment. She was very pleased to hear that it sounds like I have a healthy diet, and pay attention to food and nutrition already, and also that I had experience with the feeding tube years ago.

Of course, it also meant that there wasn’t really anything she could tell us that we didn’t already know. So it seemed kind of pointless for us. I guess it’s probably good that they have a meeting with someone like her built in to the process, for people who aren’t well-to-do organic locavores who make their own bread and cook because they are used to a low-sodium whole food diet. Intellectually, I also understand that it’s good she got to meet the healthy, pre-treatment me, so she’ll have something to measure against in our upcoming weekly appointments, but … eh.

And, as I thought about it, I realized that it’s good they have someone on the treatment team whose job is to monitor me and be responsible for me getting enough nutrition to stay as healthy as possible through the treatment and recovery. That’s great and means I am well supported. On the other hand, that implies that I will need someone to monitor me and be responsible for making sure I get enough nutrition during treatment and recovery. That is scary and ominous.

So, I ended the appointment thinking about how it’s very likely that in a few weeks my mouth will hurt enough that I’ll be happy to be able to barely swallow liquids, and just getting enough calories on-board will be a chore. And, as we learned, it will be an important one, because if I lose weight in my face, the targeting mask for the radiation might not fit quite right anymore. (Gee. Great. Are you kidding me? How much more ridiculous crap do I need to worry about?)

Finally, instead of dwelling on that, I decided I’d just put all that on hold, and delegate the worrying about it to our new nutritionist, and move on to the next thing on the list.

Which was Friday morning. My initial exam at the specialist dentist, who evaluated my teeth and jaws for their ability to cope with the treatment and after-effects. That was … something. More on that later.