Thursday, October 31, 2013

An Inadvisable Plan

Today's image is a graph of my weight for the past year (click on the picture to embiggen). You can see that I've discovered a very effective weight loss technique. But I don't advise that you try it.

My weight was pretty consistent for years, remaining between 174-178 pounds most of the time with an occasional foray to 180 (at which time alarm bells would sound and in a day or two I'd be back below 178). For my height, 175 is the boundary between "normal" and "overweight" body mass index (BMI).

A more ideal weight for me would be in the mid 160's. I got there once by dieting ten years ago but I had to give up too many foods I liked to do it and slowly drifted back up to my "normal" weight.

Cancer, or more accurately cancer treatment, dropped me right through that zone. I bottomed out just above 150.

This morning I weighed 155.6.

I've put back on a few pounds, slowly.

We'll see what happens as I continue to recover. I have heard several stories of people who are permanently lighter after head and neck cancer (that's the general class in which tongue cancer resides). Because of their changed taste and saliva they don't find as much pleasure in food and therefore don't eat as much.

Tuesday, October 29, 2013


I've started adding an image to every post for the sole reason that it makes this blog look cooler in my post-Google Reader RSS reader (Feedly).

Regular readers will recall that hydration has been a challenge throughout this adventure.

Obviously it was tough when I was solely tube feeding. It takes a lot of time to get in both liquid food and separate liquids. Sometimes it felt like my whole day was devoted to those two activities.

As I started using my mouth again, it was still tough to hydrate because I couldn't take more than one swallow at a time. And in the beginning even one swallow was a challenge. Even recently, it was still a little uncomfortable to drink a glass of water or juice.

About two weeks ago, though, I noticed that I could drink a glass of water almost normally. So I've been doing so regularly and my hydration seems to be better as evidenced by many fewer instances of dizziness when I stand up.

Today I actually felt thirsty. Sensations of hunger and thirst seemed to disappear for a while. Hunger has been back for a while but thirst is just returning.

It felt good to drink a glass of water to quench it.

One bit of bookkeeping: regular readers will also recall that I had quite a battle with constipation in the latter portion of treatment and for quite a while afterward. It got a lot better after we consulted a GI and I started taking four doses of laxative a day. A few weeks ago I started eliminating some of those doses until I was down to one dose a day. My bowel function was still far from normal, but at least things were moving.

A week and a half ago I stopped taking laxatives entirely. I'm now happy to report that I have bowel function that closely resembles normal!

I've reported that I currently can't taste sweetness. It means there is no such thing as a "treat" right now. But today I tried a bite size plain chocolate bar and it tasted a little bit good. I could definitely taste the chocolate flavor and maybe a tiny bit of the sweetness. The texture still gets funky after it's been in my mouth a few seconds but it's tolerable. A nice discovery.

I continue to feel much stronger. I feel a significant difference over two weeks ago. A coworker today told me she can see a big difference over when I first showed up to work two weeks ago.

It's encouraging to feel myself creeping toward normal.

Back before treatment started I spoke with Friend Paul who survived Stage IV stomach and esophageal cancer in 2005 with treatment similar to mine. He said to me, "You're going to have three bad months and one especially crappy month but then it will be over. You will recover and the bad times will shrink into the past."

I'm already starting to experience that. The worst parts of treatment are fuzzy memories. My main memories of that period are of all the loving care I received from Wonderful Wife and my sisters, parents and in-laws.

That's not a bad way to remember it!

Friday, October 25, 2013

A New Plateau

I seem to have reached a new plateau of recovery this week. I went to work three days this week and worked at home part time on the other days. Here it is Friday night and I'm still feeling pretty good. If you remember, last week after a slightly lesser amount of activity I was completely exhausted. So this is progress!

On Wednesday we went to Dana-Farber for my first post-treatment scans. These scans determine whether treatment was successful, and will continue for several years to watch for any recurrence. I had a PET/CT scan that covers my entire neck and torso and a CT scan of the neck only.

This post from July describes a PET/CT scan.

My next doctor appointments are on November 5. I'm not sure if I'll hear scan results before then.

I had to fast most of the day in preparation for the scans, including not drinking fluids. These days I'm all about getting my target calories so it was weird to fast. It also made me dehydrated, so the IV for the PET and CT contrasts was painful.

I was just rereading posts from May and June. I said at one point that I didn't mind needles. Now that I've been stuck dozens of times and experienced nurses trying to get IVs into collapsed veins? I mind needles a lot more.

The rest of this week I have managed food pretty well. I've hit or come close to my 2000 calorie goal every day except the fasting day. I've been trying a lot of different foods to see what works.

One day at work some coworkers and I went to a Lebanese place that has a "meza" bar with a wide assortment of hot and cold items. It as a great opportunity to try a bunch of different things. Some things I liked: tuna salad, "green gazpacho" (made with cucumbers instead of tomatoes), and especially spinach fritters which were just greasy enough to lubricate the chewing of them. I also had a bowl of clam chowder. Green salad also works pretty well, although I spend a lot of time after eating it scraping bits of lettuce off my teeth.

Soup is my main staple right now. Creamy tomato soups in particular taste good and go down easily. And they have a lot of calories.

This was the third work week in which I went to the office. The social aspect is mostly over now - people are used to me being around again (and people sweetly tell me every day how much they like having me back!) - so I was actually trying to do some work this week. I've noticed some mental side effects that I hadn't noticed before.

Some parts of my brain are rusty. For example, the problem solving part. My dear coworker Mike helped me solve several problems. After each one I would say to myself, "Doh!" The solution was something I used to know, or would have previously been able to figure out. When I try to solve a problem right now it just feels like those circuits are turned off.

I'm also noticing some eyesight changes. I wear progressive lenses and I also have a pair of single-focus computer glasses that I leave at work. They worked great before cancer. Now they are not the right prescription and I can't use them. I wonder if that's temporary. I'm almost due for my annual eye exam so I'll have that discussion with my eye doctor.

Tonight we went out for Mexican food. I had a fantasy that a cheese enchilada with sauce might taste good and be wet enough. I thought refried beans might work, too. But the result was the same as with almost any food I eat: it tastes normal and good for the first bite. Then taste disappears over the course of the next few bites. Then the food is tasteless for a few more bites and finally becomes unpleasant. But I think I managed to eat a third of an enchilada and maybe a third of my beans. I had a couple of bites of rice, but rice is like bread: it's very thirsty and soaks up what little saliva I have.

That being said, I am getting used to it. My mother's advice was right - just keep eating and the new experience of it becomes normal.

Little Sister told me the story of a chef who had the same cancer and treatment. He said his sense of taste took a year to come back and returned one type of taste at a time. Mine is already like that somewhat: I can taste sour and salty but not sweet. Tonight I had a virgin margarita and I could mostly just taste sour. I tried a sip with some salt from the rim and the salt taste was very strong. I also tasted Sprite that one of the Progeny ordered. It tasted like club soda - no sweetness (or flavor) whatsoever. Just unflavored carbonation.

I remarked to Wonderful Wife this morning, "When I'm not trying to eat or sleep, I feel kinda normal!"

Monday, October 21, 2013

A Better Food Day

Our meeting with the doctors on Friday brought home to me that I had been using my feeding tube as a crutch. I already knew that, but telling them I had reverted made it more real. I came home with a new determination to get back to eating food. It helped that the bad taste problem improved substantially in the latter half of last week.

So I have successfully avoided almost all use of my tube for the past three days.

On Saturday I used it for the routine half-liter of Gatorade I had been putting in upon waking up every day. That was my last use.

I'm not taking very many meds now. Just occasional tussin (expectorant to loosen mucous) and Ativan. I've been taking those by mouth now.

As I've mentioned, it's a challenge to ingest my 2000 calorie daily goal all through my mouth. But I've been trying a lot more things and I'm finding some foods that are palatable, or at least tolerable.

Here's what I've eaten/drunk today:

Item Calories
Cherios, whole milk 200
Toast w/Nutella 150
OJ 100
Instant Breakfast 300
Starbucks Chai Latte (whole milk) 250
Campbell's Tomato Bisque 325
Apple Juice 110
Apple Juice 110
Lean Cuisine Chicken Alfredo 250
Apple Juice 110
Total 1905

The tomato bisque was a good discovery. I've been examining the soup section at the store to find soups that are calorie-rich. The bisque tasted good and went down very easily. The fettucine alfredo was also surprisingly edible. The sauce had enough oil in it to keep the pasta from sticking to my teeth.

I'll still figure out something to eat or drink tonight to put me over 2000.

Apple juice is the only fruit juice I've tried that doesn't have an astringent effect on my mouth. Hopefully I'll survive all the arsenic.

I realize I have nowhere near a "balanced" diet at the moment but I'll worry about that later. Right now it's all about calories so I don't lose any more weight.

Sunday, October 20, 2013

Level of Detail

Way back at the beginning of my career, my first programming job was at Boeing working on flight simulator visual systems. That means the computer graphics system that produces the 3D images that the crew sees outside the window of a flight simulator. There can be many elements in a flight simulator scene but one that is almost always present is terrain.

The group in which I worked eventually built custom hardware for such a system. It filled a room and consumed several households' worth of power. These days, the smartphone in your pocket has many times the graphics capacity!

At the time, graphics capacity was limited. Terrain, and everything else in a computer graphics scene, is made up of polygons. The system can only draw so many polygons in the time available to render a scene. To produce the illusion of smooth motion, the system has to draw at least 15, and more typically 30, "scenes" (frames) per second.

One of the projects I worked on was called Level of Detail. When objects are farther away from the viewer, they can be drawn at a lower level of detail (fewer polygons) without the viewer noticing. The image above is a test image for a level of detail algorithm for terrain. The blue polygons are at full detail; the green polygons are twice as long on a side; and the red polygons are 4 times as long on a side as the blue. The stitching pattern is one of the artifacts I was trying to fix - the reason for it (z-buffer resolution) is too complicated to go into here.

The point is that information (polygon detail) became available as it was needed as the position of the viewer changed.

Why am I telling you this? Because I'm discovering that there is an art to being an oncologist, and "level of detail" is one important aspect of it.

Cancer doctors spare you the details at the beginning, and only give them to you as you need them.

Below are several examples from my follow-up appointment with Doctor Rad (the radiation oncologist) on Friday.

The first example concerns my teeth. Before treatment I was told to visit my dentist and get full x-rays and fluoride trays. I was supposed to use the fluoride trays nightly through treatment. I, like most people with my type of cancer and treatment, was not able to do so because of treatment-related mouth pain. The trays aggravated my gums mechanically, and the fluoride gel burned the damaged mouth tissue.

I figured I was protected by the fact I didn't put any food in my mouth for an extended period, so no sugars available to cause decay. Plus I was using the buffered saline rinse very frequently and that is supposed to provide a fair bit of protection of the teeth.

Doctor Rad brought up the fluoride during Friday's appointment. I thought it was only needed during treatment. I asked her how long I should use it?

"Well... I'm trying to find a way to break it to you... Forever."


The second surprise was a discussion of my beard. It is starting to grow again in a horizontal line just below my cheekbones. Doctor Rad told me Friday that it will likely never grow back on my neck. I've had beards off and on throughout my adult life. I guess I have had my last beard. Fortunately, it is not a huge part of my identity.

The third was the puffiness in my neck, which I knew was due to the lymph nodes recovering. She told me the puffiness is called lymphedema (logical name!). She told me I should at some point go to special physical therapy for it, where apparently I'll learn to massage my neck in such a way as to clear the edema.

After meeting with Doctor Rad we met with the nutritionist and the speech and swallow therapist. I can't remember if I mentioned this before: I also thought that the swallowing exercises were only to get me back to the point where I could eat. But last time we met with the nutritionist she told me that they recommend that I do the swallowing exercises for the rest of my life. The swallow therapist told me they have had patients come back as long as ten years after treatment with suddenly compromised swallowing because of scar tissue that formed that long after radiation.

So I have to establish two new daily habits that last the rest of my life: swallowing exercises and fluoride treatment. Plus some shorter-term work on my neck to relieve the lymphedema.

I didn't know I was going to emerge from cancer treatment with a bunch of life-long homework!

We also talked about taste and saliva. Doctor Rad seemed sure that both would improve. She thinks the bad taste issues I'm having at the moment might just be due to all the antibiotics I've taken in the past few months. My bacterial flora is certainly way out of whack. The nutritionist gave us the names of a couple of concentrated probiotic products that I can use to try to get good flora reestablished.

Doctor Rad was a little disappointed to hear that I had reverted to tube feeding. My next appointments are on November 5 and she recommended I use that as a goal and plan to remove my feeding tube that day. The nutritionist and swallow therapist think that's a little optimistic - they have safety criteria that say I should be eating by mouth with no issues for two weeks before removing the tube. The swallow therapist observed me drinking water and eating a cracker. I haven't noticed, but I clear my throat a lot while and after doing both. That's a sign that my swallow is not completely normal and there is some risk of aspirating food or liquid. They want to see that risk gone before removing the tube.

I had already decided that I was using the tube as a crutch and needed to get back to eating. Yesterday I managed to get all my calories through my mouth but it was a bit of a struggle. Nothing tastes "good". I have to force myself to keep eating and keep washing it down with a beverage, unless I'm eating soup with plenty of liquid in it.

Wonderful Wife looked up how to deal with eating challenges due to diminished taste and saliva. One suggestion she found was to distract oneself while eating by watching TV, reading or listening to music. I have been reading while eating and that does sometimes distract me enough that I get through a portion of whatever I'm eating without being aware of every mouthful. I'll have to also try music in headphones or TV. I won't be able to do that at every meal, though.

I need to try lots of different foods and see what works. Yesterday I had it in my mind that Japanese udon (noodle soup) would taste good. So we went to a Japanese restaurant for dinner (my first dinner out!) and I gave it a try. The tempura shrimp that came with the soup was good dipped in broth and soy sauce. The broth by itself tasted fishy. The fresh vegetables in the soup and the tempura vegetables tasted pretty bad, or perhaps it was the texture.

It's hard to think up foods that might work. I also need foods to be calorie-rich. The only foods we can come up with that are both wet and calorie-rich all contain dairy. I have nothing against dairy, but I can't eat it for every meal! I'm going to have to branch out and eat foods that are not wet, and just get used to washing drier foods down.

Eating is going to be my hardest long-term challenge. I guess I've probably made it clear by now: it really sucks for eating to be an unpleasant chore instead of something enjoyable.

Whenever I do get my feeding tube removed, the removal of the tube sounds interesting. The nurse practitioner will do it in the office. I read the instructions right after the tube was placed. They're pretty simple:

  1. Grasp firmly.
  2. Pull.

They just yank the thing out! On the stomach end of the tube there is a little hard plastic collar that is scored. When they pull on it, the scores give way and the collar collapses and the whole shebang comes out through the hole.

"It stings for a minute, " I'm told.

Something to look forward to.

Saturday, October 19, 2013

Tired Puppy


When I get tired these days, I get really tired.

I went to work for three partial days this week, went for a long walk, and spent Friday waiting around at Dana-Farber.

The work days went well. I spent most of the time clearing up administrative items that had collected over the time I was gone. On Thursday I also met with colleagues about a project I can help with in the short term. That was productive. But the meeting was at the end of my day and I was pretty tired by the end of it.

On Wednesday I went for another stamina-building walk with Wonderful Wife. We went to Appleton Farms in Hamilton. We've driven by it many times on the way to Crane Beach but had never explored it.

We have belonged to the Trustees of Reservations since we moved here in 2009. They own, preserve and manage more than a hundred open spaces in Massachusetts. We've barely scratched the surface but the ones we've visited have all been excellent.

I've read about Appleton Farms in the Trustees guide. One part of the (very large) property is called the Grass Rides. It consists of a bunch of grass carriage paths that the Appleton family built through the forest. I think they are still used for equestrian events like fox hunts (without the fox).

Adjacent to the Grass Rides is a huge section of rolling pasture land with scattered stands of trees. Part of it is the Great Pasture, which the sign says is the largest remaining open space in the state.

I write about it at such length because it was the best of our walks so far. Fall colors approaching their peak, a sunny day with temperatures in the 60's, a gorgeous landscape and the discovery of a new favorite place combined to make the walk spectacular. Being surrounded by natural beauty has always been the best tonic for whatever ails me. I always feel both energized and calmed when I wander in such places.

Wednesday's walk was the high point of my week.

The photo is taken at Pigeon Hill, which you can see just left of center on the map.

Yesterday we spent much of the day at Dana-Farber. I only had two appointments, but the doctors were very late for both of them. I think I've written before that we've noticed that during treatment we rarely waited and post treatment we seem to always wait. Waiting is always annoying, but we also remember how sick I felt during treatment and how much more torturous waiting would have been during that time. So we're willing to accept the inconvenience now for the benefit of patients who need the promptness more then I do. There are plenty of people in the waiting lounges at Dana-Farber who are obviously much sicker than I ever was.

Vis a vis today's topic: that waiting is also tiring.

This week, both while walking and at work, I noticed that I have gained significant strength compared to just a couple of weeks ago. That's encouraging.

But I also reached my limit this week. Last night (Friday) I was completely exhausted. When I get exhausted these days it is fairly unpleasant; I'm very uncomfortable in my skin throughout the afternoon and evening until I go to bed. Yesterday afternoon I took a nap on the sofa for an hour but it didn't help at all.

We went to bed shortly after 10:00 and I fell asleep immediately. I had my usual wake-up at 1:30 AM and noticed that I already felt much better (then went right back to sleep).

Today I don't feel the discomfort of exhaustion but I have no energy to do anything. I've tried to make progress on a couple of projects but can't stay with them more than a few minutes.

To be honest, one other factor contributing to my exhaustion this week is the Red Sox. They had several late-running playoff games this week that lasted until midnight. I didn't make it to the end of any of them, but I still stayed up too late.

Today I am lying low. That's difficult for me because it's another beautiful fall day. But my body clearly won't allow me to do anything but rest today.

Wednesday, October 16, 2013

Back to Work!

I went back to work last Thursday!

I'd started to get pretty bored at home on days that I felt good, and I've been gone from work too long. It was finally time to go back.

Wonderful Wife was attending an activity downtown for three hours, so she dropped me off and picked me up. That way I didn't need to take any public transit.

I knew the first time back would be mostly social. I was actually afraid I would cry when people greeted me but I managed not to. People were so happy to see me, and especially to see me looking well. Hugs all around. It was touching.

I went back for four hours yesterday and again for a little more than four hours today. And in lieu of the recovery walks I've been taking with Wonderful Wife, today I walked from work to the train station on the way home - a twenty minute walk along the waterfront.

I've been tired after these excursions, but it also feels great to have that big dose of normalcy back in my life.

I plan to work back up to full time slowly. I am feeling a lot stronger than even two weeks ago, but I don't want to overdo it and have a big setback.

Today over lunch with coworkers I learned of a project that can use my help, so that will give me a way to re-engage.

Big milestone.

Tuesday, October 15, 2013

After Effects

One after effect I'm noticing from cancer and treatment is that I have a new fear of growing old and frail. Months of feeling unwell seems like a preview.

I also have a fear, or maybe just a more knowledgeable fear, of developing cancer again 20 years from now. Of course, by then hopefully treatments will have progressed significantly and not involve so much collateral damage.

What can you do?

Another thing I notice: a strong empathy for anyone going through physical suffering. I see a news story about someone with a more arduous cancer battle than mine, or a marathon bombing survivor learning to live without a leg, and it brings tears to my eyes.

Meanwhile, back in the real world...

If you remember, I had a CT scan last Tuesday to determine once and for all the extent of the sinus infection. The answer? I no longer have one! The only finding was a slight swelling in the left maxillary sinus (the one behind the cheekbone). And my sinus openings are not blocked.

That scan occurred on the second-to-last day of the last course of antibiotics. Apparently the drugs and my newly recovered immune system finally did the job.

That's really great news, and my symptoms are better. Unfortunately it did not take away all of the nasal and throat mucous. There is much less of it now, but I still wake up three or four times a night to cough up junk.

The bad taste in my mouth was especially horrible at the start of last week. The worst part was apparently due to the antibiotics because within a few days after finishing the taste had improved somewhat. Unfortunately, it only improved about half way. During some times of the day, particularly the afternoon and evening, I still have a pretty disgusting taste in my mouth. I can spit all I want but the taste is somehow inherent.

Last week my tongue had a thick coating on it. I still haven't received the results of the culture that my primary care doctor's office took last week. But it may have been "antibiotic tongue" because it also cleared up significantly a few days after finishing the antibiotic. Unfortunately the decreased coating didn't take away the bad taste.

I've been mostly tube feeding for two weeks now - maybe three? Over the weekend I got tired of it and started trying to eat foods even with the bad taste. I had a couple of bites of pepperoni pizza, a couple of bites of salad. It seems like the more flavorful something is the better it works. I went and got some Thai coconut milk soup and some fried rolls. The soup broth tasted pretty good, but the texture of the mushrooms was icky.The salad actually worked pretty well - the water in the lettuce made it palatable. The shift in sense of taste was apparent in the salad dressing and in the Thai sweet and sour dipping sauce: in both of them all I could taste was the vinegar.

I've also been eating cream of wheat. And I've really been enjoying Starbucks chai lattes.

"Eating" is mostly a chore these days. There's very little enjoyment in it. Nothing tastes like it should. Plus whole categories of my favorite foods don't work at all, like bread and pasta. No donuts, sandwiches, rolls or cake. Candy also has both bad taste and bad texture.

My mom, who has been through this after saliva gland cancer in the late 70s, advises me to just eat anyway and eventually the "changed" taste will be the new normal.

That's not very encouraging. I miss the enjoyment of food.

Many patients recover their sense of taste (or most of it) and their saliva (or most of it) but it can take up to a year.

Tuesday, October 8, 2013

Random Bits

No specific topic today, just bits of random information.

Even though I'm almost completely tube feeding at the moment, I managing to get enough calories to hold my weight steady. My normal pre-cancer weight was 175-178 pounds on our home scale. My low point was just above 150. I'm currently hovering in the 153-154 range.

I've discovered that while the crappy taste in my mouth prevents me from eating anything solid, liquids are OK. I've been enjoying Starbucks chai tea lattes with whole milk for more calories (I sometimes get confused and order a tai chi latte). I can also enjoy vanilla Carnation instant breakfast. Somehow the flavor in liquids remains uncorrupted long enough to swallow it, unlike solid food.

I've assumed the bad taste is from the sinus infection, but earlier today I googled [antibiotic bad taste] and learned that antibiotics can, in fact, cause a bad or metallic taste in the mouth. Tomorrow is the last day of this most recent 7-day course. Maybe, if I'm lucky, the bad taste is due to the drug and will go away in a few days.

I've started keeping sugar free lemonade from a mix in a water bottle and sipping it throughout the day. Plain water tastes too bad, but sipping the lemonade helps keep me hydrated I think.

It's not clear whether the antibiotics are working or not. I seem to be a bit better. The colored mucous is lighter in color and less opaque and less copious. My energy level is up noticeably the past two days. I'm sleeping slightly better each night (last night i woke up at 12:30, 2:30, 4:30 and 6:30 almost exactly).

With past non-cancer sinus infections it was always obvious when it was resolving. This time not so much. I think one reason is that I still have residual radiation-induced mucous superimposed on the sinus infection.

I had a CT scan of my sinuses this morning. Doctor B the ENT ordered it during my visit with him last Wednesday. He wants to see the extent of the infection. I'm not sure what we'll do with the information, unless it shows something serious like the infection threatening to migrate out of the sinuses.

Last night the taste in my mouth was especially bad and I looked at my tongue in the mirror. The top was almost completely coated with a light-yellowish substance. Even though I'm still taking an antifungal every day, I wondered if I had thrush again. Antibiotics make one susceptible to thrush, and I have been on a lower dose of the antifungal. I stopped by my primary care doctor's office today (it's across the street from where I had the CT scan) and the nurse practitioner took a look. She does not think it is thrush. She took a culture swab and we'll find out in a day or two what it is. It could just be "antibiotic tongue."

A few weeks into treatment my beard and moustache began to fall out. A few days later I shaved it off. I have not had any facial hair since. The area where my beard would normally grow has remained soft as a baby's butt - like it was waxed or I had electrolysis or something.

Last week normal, course, dark beard hair started growing again in a couple of disconnected 1-square-inch patches in the moustache area. I've actually had to shave!

I'm planning to go to work on Thursday! Wonderful Wife has an engagement downtown that will take about three hours, which is perfect for my first visit to work. She will drop me off and pick me up. My normal commute involves an hour of train, subway and walking. At my current energy level I'd be pretty tired by the time I got to work that way. I'll work up to it. I'm excited to see my coworkers for the first time since early summer.

I'll keep my fingers crossed that nothing changes for the worse between now and then.

Monday, October 7, 2013

X-Ray Specs

I've been meaning to post these images for a couple of months now but never had the energy or priority until now. I'm feeling slightly more energetic today (maybe 20%?) so here you go.

We developed a great relationship with Dr. Rad, the Radiation Oncologist who treated me. We saw her every Thursday during the seven weeks of radiation plus several follow-ups. We see her again next week.

I was fascinated by the treatment planning process. She was surprised by my knowledge of the area (I worked a lot in medical imaging in the 1990's). Toward the end of treatment, she spent about half an hour with me showing me the treatment planning software and the details of my particular treatment plan.

For a refresher on how IMRT (Intensity-Modulated Radiation Therapy) works, see this post.

The most important part is that the doctors are able to shape the radiation beam somewhat precisely. They can deliver maximum dose to the tumor but almost no radiation to critical structures that are very nearby. That is called "treatment planning". The images below are screen shots from the treatment planning software. Most patients would never see them.

Click any image to embiggen.

Figure 1

Figure 1 is obviously a side view. The colors indicate radiation dose to be delivered. You can see that the base of my tongue was heavily infiltrated by the tumor. In this image, the lymph node is superimposed on the tumor so the outline of the pink thing is not necessarily exactly the tumor outline.

Note that there is a hard boundary in front of my spine. There is also a gap in the front of my throat. This is referred to as the laryngeal block - they don't want to deliver any radiation to my voice box. It is fragile. The green spot at the bottom is the lower portion of the zone that includes all of the lymph nodes in my neck. You'll see that zone better in a later image.

Figure 2

Figure 2 is a front view. The black color is air, so you're seeing my nasal cavity, throat and esophagus (and lungs).

The pink area of highest desired dose is the tumor and surrounding tissue, plus Lumpy the Lymph Node and nearby tissues.

There are several dozen lymph nodes in the neck and they want to treat them all aggressively. The lymph nodes are the first place the cancer moves to when it metastasizes and there could be cancer "seeds" in any of those nodes. The blue zone is encompassing all of those nodes, with the green area delivering a slightly lower dose to surrounding tissues.

In Figure 2 you can clearly see the laryngeal block, sparing my voice box.

Figure 3

Figure 3 is looking down through my head (or up, it doesn't matter).

This image clearly shows just how big Lumpy the Lymph Node was. It also shows that Pappy the Papilloma (the tongue tumor) was larger than I imagined.

In Figure 3 you can also see again how the radiation beams are shaped to avoid irradiating my spine.

Figure 4

Figure 4 really shows the full extent of the treatment field. Note that it reaches all the way past my collarbones.

You can see the blue and green zones that are covering all of the lymph nodes in the neck, and you can see the laryngeal block.

This particular slice happens to not pass through the tumor. Since we can see some of my spine, we can tell that this slice is just behind the back of my throat.

So there you go. Now you know exactly which parts of me were killed with radiation. No wonder the outside of my neck is still puffy and recovering.

Sunday, October 6, 2013

Laying Low

Today I've barely moved off the sofa. I've been very fatigued the entire day.

I tried to do a house project: install ceiling hooks in The Progenies' bedrooms. Even just using a stud finder for a couple of minutes while craning my neck was exhausting.

The other day I started estimating my energy level compared to pre-cancer normal. Today I'd put it at about 10%. I think on my best days yet it hasn't surpassed 40%, maybe even lower. I can't yet imagine doing anything that might resemble a workout. I can't even imagine running a short distance at the moment.

In the best of all possible worlds today's fatigue would be due to me finally having the last battle with the sinus infection. As always, I'm hopeful but not necessarily confident. This is day four of the seven day course. So far I'm tolerating the antibiotic just fine.

I have to take this one four times a day so I feel like I spend my entire day timing my fluids, food and drugs. The instructions say to take it with or without food but I ain't gonna try it on an empty stomach.

Part of today's fatigue could be due to a disturbed night of sleep last night. I've been taking Adavan before bed every night to quiet my mind but last night I didn't take it to see if I could fall and stay asleep unassisted. The answer is no. I guess I'll just keep taking it until the sinus infection is gone.

Last night I had one of those dreams that runs all night even through getting up to pee. I can't remember the details now but it had to do with extreme thirst.

I don't understand the hydration situation at all. In a normal pre-cancer day I would have a small glass of orange juice with breakfast, a diet soda with lunch, a few cups of water at work during the day and a glass of something with dinner. It wouldn't add up to all that much. These days I'm putting in 1-1.5 liters of gatorade plus one or two 12oz glasses of Juven (recovery drink) plus all of my food is liquid. Yet I still often feel dehydrated and get dizzy when standing. I'm peeing often enough and my urine is not dark.

I just don't get it.

As for eating? I still have the bad taste in my mouth full time. I try to take a bit of something every day to see if it's tolerable but it hasn't been so far. So I'm getting all my food via my tube. At least I'm doing well at getting 2000 calories per day. My weight is holding steady.

So. Energy level very low today. I'm looking forward to more of those energetic days again sometime soon.

Wednesday, October 2, 2013

In the Twilight Zone

In the previous post I wrote that I thought I had a cold or flu. I no longer think I did or do. I'm not quite sure what's going on. Whatever it is, it caused my sinus infection to change and become much more "active".

I went to see Doctor B the ENT today and had a very long visit. It was an "on call" day for him so I don't think he books many appointments and had time available.

[Although I must say that throughout this entire experience I have only felt rushed by a doctor once or twice in dozens of visits.]

One remark he made is that perhaps what I'm experiencing is my immune system having reached a high enough strength to launch a real response. That would explain the "active" sense that I have.

Doctor B used an instrument to look very carefully around my nasal cavity. If he could see active drainage from the sinus openings he would have taken a sample to culture. That might tell us exactly what bug we're fighting and in turn tell us exactly what antibiotic to use. Unfortunately, at the time of the exam my sinuses were not draining.

He commented that this infection has surely been stubborn, but that he is equally stubborn and we're going to figure this out. He didn't mention it, but from reading online I've learned that long-simmering sinus infections can have very serious consequences including bone and eye damage, loss of smell, hearing damage and even brain infection. I think those would require an infection lasting much longer than mine, but still.

So in the spirit of stubbornness, Doctor B prescribed the sixth course of antibiotics since May. Clindamycin this time. A one week course to start with perhaps a second week depending on the outcome.

If we really can't get rid of this with oral ("systemic") antibiotics, an option is to use intravenous antibiotics. However, that treatment requires admission to the hospital, probably for about three days. That's a very expensive and less enjoyable option, but it's in our back pocket.

The bad taste in my mouth that started on the weekend is still present. I have tried eating something each day but everything still tastes bad. So I've been tube feeding almost exclusively. That's quite a setback from those days last week when I was getting all my calories via my mouth, but this is temporary. I hope to be eating again by next week.

My sleep has improved a little. I did not have nasal congestion throughout treatment but I did have it over the weekend. Last night I was not congested. The last two nights I have only woken up twice each night. Better sleep helps a lot.

I felt very weak earlier in the week. Yesterday my big exercise was walking around Target with Wonderful Wife for 15 minutes. Today I feel a bit stronger and Wonderful Wife tells me I have more life in my eyes. Even though I've been tube feeding only I've been getting in at least 1800 calories every day.

I haven't driven a car since treatment started in June. Once I was on narcotics I was not allowed to drive. I've been chauffeured around by Wonderful Wife for months.

This evening I drove myself to the pharmacy to pick up the latest prescription. Progeny the Elder was playing in the yard and when she saw me about to drive away she ran over. "You're driving?" she asked with surprise? "Without Mom?"

I had really hoped to show my face at work this week but I'm not sure that's going to happen. I had gotten to a state where I wasn't spitting every few minutes but now the frequent spitting is back.

I'll get there.

I just realized that there is an assumption I have that I haven't been explicit about: that the sinus infection is contributing to more fatigue and other discomfort than I would normally have at this stage of recovery. I have the expectation that if I could get rid of the infection I would feel consistently stronger and energetic. That assumption could be wrong.