Saturday, December 28, 2013

Final Bill Tally

I finally got around to catching up on the medical billings.

This is essentially the final tally. I'll have a few ongoing expenses for surveillance, but this covers all of treatment and related expenses such as the IV stand rental for tube feeding, the tube feeding supplies, swallowing therapy, etc.

The Grand Total:

Billed Allowed by Insurance Paid by Insurance Paid by Me
$355,539.08 $128,013.95 $125,319.35 $2,695.00

Thank goodness for insurance, eh?

I have updated the Medical Bills link in the sidebar (only visible in a full browser). Here's the direct link.

This tally doesn't include parking. That ranged from $7-12 per day depending on how long we were at Dana-Farber, and we were there at least 50 days. It also doesn't include prescriptions. We pay a maximum of $10 for any prescription, but I had a lot of them. I'll tally those costs at some point because I'm curious. Together those expenses will add another several hundred dollars at least.

Friday, December 27, 2013

Happy Holidays

Sheesh, it's been a while.

I haven't had too many deep thoughts to share with you, lately.

The photo shows the product of my latest haircut. My scalp hair has really come back. In fact, it seems darker and thicker than before cancer treatment.

And it also looks like if I let it grow more than half an inch it might even have some curl to it!

Up close, my scalp looks to me like the close-up photos of hair transplant results from Bosley.

During and after treatment my hair almost stopped growing. And it thinned out quite a bit. When we would cut it back in August and September the trimmings were minimal.

We've been enjoying the holidays. Mostly laying low and relaxing.

I always have at least a week and a half off at the holidays, sometimes more. I always have ambitious plans during the break. I like to learn something (how to program iPhone apps in 2010) or build something (helium balloon aerial camera in 2011).

This year I also had big plans, but I just don't have energy.

I keep telling myself to chill - that it's OK to just rest.

I think I mentioned before that my body temperature regulation is completely different now than it was before cancer treatment. I used to never feel cold, even in our drafty 113-year-old house in the winter. But now I am cold much of the time. So my favorite Christmas gifts from Wonderful Wife were two pair or fleece pants and an electric blanket for our bed.

Getting into a pre-warmed bed at night is heaven.

We've been sleeping until 9:30, which is pretty unheard of for me.

I'm still feeling slightly depressed. Getting out helps. The Progeny love to just hang out at home during the holiday break and play the new video games they got for Christmas, but I get cabin fever. If no one else is interested, I go out for errands by myself and enjoy it.

Monday, December 9, 2013

Neither Here Nor There

I find myself in an emotional limbo.

I am no longer a cancer patient.

I am not yet "normal".

(Although I think I do a decent job of faking it.)

The emotional experience of recovery from treatment is interesting.

One aspect is a widening of focus. During diagnosis my focus narrowed rapidly until we got to the specific thing I had to confront. During treatment and early recovery my focus was extremely narrow: coping with side effects.

In recovery my focus has slowly expanded to let in more and more of the "real world". Returning to work was a big step in that process.

But I still feel fairly distant from normal. Even a little bit distant from "life".

It's a nebulous thing. Many aspects of life are back to normal and good. I'm making breakfast for The Progeny most mornings again. We're partly back to our habit of getting out to new and interesting places on the weekends. I do physical things like vacuum and shovel snow.

Wonderful Wife and I are as in love as ever.

Apparently it's common for new cancer survivors to have emotional difficulty after treatment. One study said 1/3 of cancer patients suffer from PTSD, even as long as 10 years after diagnosis. Up to a quarter of cancer patients experience depression.

Even without serious emotional problems like PTSD or depression, one has been so focused on the goal of living that one can feel lost when that goal doesn't require as much attention. Normal life feels less vivid after the drama of the cancer experience.

Reading the lists of symptoms of PTSD and depression, I don't suffer from either one.

One of the main specific difficulties I am having pertains to concentration. I've never been diagnosed with ADHD but I definitely have it to some degree. When I was a kid it was just called being hyperactive and I was definitely that (I still am!). So I've always had some trouble staying focused on a task (while also having the ability to sometimes hyper-focus). But lately my tendency to get distracted is in overdrive.

Today I had a physical therapy appointment in the early afternoon. I got home about 3:00. I intended to sit at my personal computer for a few minutes and check email, then get on my work computer and work for a couple of hours. I finally got up from my personal computer at about 6:30. During that time I had flitted from one topic to another with no plan or direction. Fortunately at least some of it was work-related; reading about technologies that I can use at work.

When I go to work I feel energized because it feels good to be out in the world and to be social and to have professional intellectual stimulation. I find myself acting more bouyant at work than I actually feel. I worry that my productivity does not match my apparent normalcy.

On days I go to the office I've been going in at normal time lately, but I usually leave by 3:30. I feel pretty tired on the way home and often hit the sofa as soon as I get home. On the weekends I often still feel quite fatigued. This past Sunday, for example, I was extremely tired and spent the entire day on the sofa watching football (something I never do).

I'm curious what the physiological explanation is for that fatigue. It's very common in cancer survivors and can occur sporadically for up to a year. My mom said after her most recent cancer it occurred for two years. It seems like the biological effects of treatment would be gone by now, so why the fatigue?

My sensory issues could definitely be contributing to my sense of disconnectedness. While I'm getting used to the hearing loss, it's still real and it both makes the world sound like it has a blanket over it and also makes it difficult to hear conversations. Sometimes I give up listening. And the taste issues and the conversion of eating from a source of pleasure to an often unpleasant chore impacts a significant way of sensing the world.

None of this is to say that life is terrible. My life is pretty damn good.

It's just a little weird at the moment.

Tuesday, November 26, 2013


Back in the early days of my cancer treatment, radiation and/or chemotherapy caused my beard to fall out. Once it started to fall out in clumps, I shaved it off.

From that time until perhaps a month after treatment my face and neck were baby smooth with no shaving required. Then it slowly started to grow back just along my left cheekbone.

Over time beard regrowth has spread slowly. It first came back in a line along both cheekbones from sideburns to nose. Then it started spreading southward from there.

Once that regrowth began I had to start shaving because the growth pattern was so weird.

As of this week it has reached down to my jawline on both sides. There are still some spots thinner than others, but if I grow out stubble now it looks kinda normal - not spotty.

Nothing grows on my neck below my jawline, yet. Dr. Rad told me I might never grow beard hair there again since it was ground zero in my radiation treatment field.

The beard hair was sparse at first and I could just shave with water. Last week I used shaving cream for the first time.

The hair on my scalp thinned significantly but never fell out completely. It is now thickening quite noticeably. I suspect that's a factor in people telling me that I look healthier since my head hair appears a lot darker now than it did two months ago.

My cold symptoms are almost completely gone now. That's welcome. And my eye appears to be back to normal.

I still get fatigued at random times, but much less than a month ago.

Another change I've noticed? I'm not as warm-blooded as I used to be. In the past I would be the last person to get cold. But with the weather turning colder now I am chilled quite a bit. Last week The Progeny pulled our down sleeping bags out of the attic to play with. I started crawling into one while working at home or watching TV. I haven't worn pajamas since I was a kid, but suddenly I find myself wearing them all night to stay warm. And even with thick wool socks on my feet are often cold at night.

I'm not sure whether that's because I'm carrying 25 pounds less meat, or because I'm eating just enough calories to maintain my weight and not enough to fire the furnace.

And finally, in taste news: we bought some brownies at the store today and I tried a bite. Remember two months ago I tried some chocolate cake and, disappointingly, it tasted quite bad. But the brownie today actually tasted kind of good! Maybe it's true that I will eventually recover my sense of taste!

Sunday, November 24, 2013

Sensory Deprivation

Last week I got to experience four of my five sense suppressed at the same time! What fun!

Regular readers know that I've experienced significant hearing loss as a result of the Cisplatin chemotherapy. The first image in this post is the results of an audiogram (hearing test) on November 14th. The gray area is normal hearing in the population (although I'm not sure if or how it is adjusted for age). You can see that my hearing is normal up to about 2000 Hz. Then it drops of precipitously. That means I can no longer hear high-pitched sounds. An example I've mentioned before is the alarm on my wristwatch: I can't hear it all even if it is right next to my ear.

The hearing loss is caused by loss of outer hair cells in the cochlea (part of the inner ear). Apparently some patients recover part of their lost hearing, but from what I've read this is probably permanent.

Fortunately, mine is not a serious impairment. Music still sounds reasonably good. The main difficulties are hearing conversations when there is a lot of background noise, and difficulty distinguishing digraphs ("th", "ph", "sh", "ch", etc.) and other sounds in speech.

The latter leads to some pretty funny "interpretations" of things I hear Wonderful Wife and The Progeny say at home. I'll have to try to keep track of some examples. Here's one: at dinner Wonderful Wife usually asks The Progeny, "Tell me two good things about your day." One evening I heard it as, "Tell me stupid things about your day."

Now I ask them the latter question at dinner.

So that's one suppressed sense.

Two weeks ago I started having eye pain in the morning when I woke up. I tried to ignore it but four days into it I saw my ENT for a routine follow-up and he said "get thee to an eye doctor." When I did so, I didn't quite catch the diagnosis (the eye doctor has an unusual manner and speech patterns) but part of it was iritis. Sure enough, if you read that link I had all the symptoms.

It's not clear if the iritis is in any way related to recent cancer. It's possible that I still have slightly compromised immune function but who knows.

One of the symptoms of iritis is an irregularly shaped pupil. You can see that in the photo. That irregularity is caused by two things: excess tension in the iris (it is "clenched"); and inflammation that "sticks" points of the iris to the lens.

I was put on a week of two different drops and an ointment. One of the drops is the one they use to dilate your eye at the ophthalmologist. Yup, I had a dilated eye 24/7 for five days. A joy. The other drops, which I used 6 times a day, were a combination of a steroid and an antibiotic.

I went back for followup and he said the little scars pinning the iris had been successfully broken up. I was able to stop the dilating drops (which relax the iris).

So that's two senses.

The third is taste. You know the story there. Although I have to report maybe a very slight improvement.

Wonderful Wife makes a delicious cornbread. She says it might as well be called cake. It's sweet and wonderful. However, since my taste changes it has not been wonderful. It has tasted like chemicals. It was like all I could taste was the baking powder.

But tonight I tried it again and it actually tasted somewhat like cornbread! Of course, I had drenched it in butter and honey. But it didn't taste bad! In fact, I ate three pieces of it.

It's also encouraging that I ate something bread-ish. Most bread-like things are too dry (or have been). I still had to wash it down with plenty of liquid, but I was able to do so easily.

So, taste still seriously affected but maybe slightly improving.

Finally, the fourth suppressed sense: at the end of the week in which I got the eye infection I also came down with a cold. So I lost my sense of smell, too. That didn't do my sense of taste any favors.

The worst part was when my nose would become congested while sleeping and I would start breathing through my mouth. I would wake up with my mouth completely dry. It's already dry enough; I didn't need enhancement.

Yes, I was using a humidifier.

It's now 10 days since my cold started and I'm on the tail end of it. I still have some congestion but it's getting better. The cough reminds me of the cough I had during treatment.

I now have a couple of those senses back. My eye no longer hurts and I can mostly smell again. I'm almost back to "normal".

Wednesday, November 13, 2013

A Different View

It was six months ago this week that I was diagnosed with cancer.

Today I visited Dana-Farber. But not as a patient.

Before cancer I regularly attended a scientific seminar series presented by Dana-Farber's Center for Cancer Computational Biology (CCCB). Today was the first one I've attended since diagnosis.

As a side note, the CCCB is led by a former astrophysicist named John Quackenbush. If you'd like to read a short book written for laymen about genomics, I recommend his "The Human Genome".

Today's seminar featured Gavin Sherlock, a professor of Genetics from Stanford, and was titled "Tracking Adaptive Evolution in Real Time and at High Resolution".

A long time ago I intended to write a post about cancer genomics. I'll give a really brief version here.

Cancer is a disease of the DNA. The roots of cancer are in changes to DNA that are acquired during life. These are called somatic mutations because they occur in the body during life, as opposed to mutations that are inherited (called germline mutations because you get them via your parents' germ cells: sperm and egg). Somatic mutations can be caused by things like radiation, chemicals (in food, cigarette smoke, the environment), etc.

There are two kinds of mutations that are involved in cancer. Some genes act as oncogenes. When they acquire mutations that cause them to be overactive (they express an excess amount of their associated protein(s)) they cause cells to become cancer-like. They might grow beyond their normal size or location, fail to die when they should, divide more quickly than normal or take on other properties. The other kind of gene involved in cancer is a tumor suppressor gene. When these acquire mutations that cause them to be expressed less than normal (called "loss of function"), it's like taking the brakes off.

It typically takes multiple mutations in the same cell population to produce cancer.

It's also an accelerating process. Once cancer cells start dividing rapidly, they start acquiring mutations faster, too. One thing that goes wrong in cancer cells is the DNA repair process. So cells can acquire large and numerous DNA changes. Also, since they are dividing quickly, evolution occurs faster in them. Cancer cells adapt to their environment. This has implications for patients, because drugs that are targeted at a particular genetic mutation (called targeted therapies) might work well initially in a patient but then the cancer cells might adapt in such a way the drug no longer works.

The research that Dr. Sherlock presented today was performed in yeast but it has clear implications for cancer. His group used clever molecular biology tools (DNA barcodes) to trace yeast cells through hundreds of generations and then be able to pull out all of the mutations that occurred along that time line. Some mutations occur but are not advantageous so they disappear in a few generations. Other mutations are neutral, so they remain for a while but then also die out because other mutations are more advantageous. And finally a few mutations are advantageous and eventually spread throughout the population of cells over multiple generations.

We know the same thing happens in cancer. It's referred to as tumor heterogeneity. So far we treat each tumors as though all its cells have the same DNA but we know that they don't. We can't really watch evolution in a real tumor in the same way as this research did in yeast: it would require collecting cells from throughout a tumor at a whole bunch of time points. Not many patients are going to put up with that.

Biologists and cancer researchers are very clever and will eventually figure out a way to observe this in real tumors. And once we do, treatment regimens will change. We'll learn particular mutation patterns in particular types of cancer and drugs will be given in specific sequences to head off tumor evolution and kill the cancer cells before they can adapt.

Dr. Sherlock's lab's research shows how evolution actually works in cell populations. He showed some cool plots of mutation distribution over time. Unfortunately the figures were from work that is not yet published so I can't find them online to include here.

Here's a sketch. Each letter is a mutation. If you draw a vertical line through the plot at any time point, the plot shows the distribution of mutations in the population at that time. During the talk, Dr. Sherlock showed real data that looks like this sketch.

The sketch is from this presentation, which was similar to today's but doesn't include the latest experimental data.

Anyway, it felt great to think about cancer from a scientific point of view again instead of as a patient.

Sunday, November 10, 2013

Sit Rep

Much has changed in my condition over the past few weeks. I've mentioned a few changes as they have happened but I figured I'd take stock of where I am for you.


The radiation-induced mucous is about 1% of what it was at the peak, production-wise. It seems like most of the mucous I produce now is while sleeping, and it isn't much. It is much thicker though. I haven't had to carry a spittoon for a long time now. I do occasionally need to spit, but maybe a dozen times a day now instead of several times a minute. I stopped gargling with the buffered saline solution a couple of weeks ago and now just use plain water to rinse or gargle. The mucous still tastes a little bad, but I think I've gotten used to it.


This is the most significant improvement in the past week or two. The past few nights I have only woken up once during the night and I always go back to sleep easily now. I'm congested at night but sleeping through it more and more. Wonderful Wife has to sleep with ear plugs because my irregular breathing keeps her awake. After four months of seriously interrupted sleep this improvement is very welcome.


Also much improved. I still have occasional bouts of coughing but I no longer have the uncontrollable fits. The "bottom rung" spot in my throat that used to trigger them and was the bane of my existence is long gone. The best part is I no longer have automatic coughing fits every night just as I'm about to fall asleep.


Not much change here. Most foods taste close to normal for the first bite or two and then the taste diminishes rapidly. My mouth is very dry and does not produce any additional saliva with food. So foods that are not inherently wet are difficult to eat. I have to take very small bites and wash them down with liquid.

My menu has been pretty limited: soups, toast soaked in butter and honey, hot or cold cereal and lots of juices. I also like salad greens with dressing. There is a surprising amount of moisture in greens, and the coldness and crispness is refreshing in my mouth. My dry teeth get wallpapered with fragments of green, though.

I sometimes get depressed about the limited range of what I eat. I'm trying to branch out. Yesterday the nutritionist recommended I try to eat what is for dinner for the rest of the family instead of preparing my own (wet) food. I tried that tonight and ate small servings of salmon, baked beans and pears. It works, but it takes forever with tiny bites and lots of rinsing and swallowing.

Eating is going to be my most significant long-term challenge. I'm slowly accepting the idea that the challenge is going to last perhaps halfway into next year. From what I have read and heard from others, taste is likely to recover pretty well but saliva might never fully recover.


I think I reported last week that my bowels are almost completely normal now. Regular readers will remember that I struggled a lot with bowel function immediately after treatment ended.


I'm not taking any! I haven't taken any medication at all for at least a week now.


My energy level has been pretty good. It seemed higher for a bit one to two weeks ago - I'm more tired this week. Perhaps that's because I'm always pushing my activity level a little beyond my available energy.


For a long time I was the dad who just laid on the sofa. I would interact with The Progeny but Wonderful Wife did the bulk of the actual parenting. Over the past few weeks I've been trying to take up my parenting weight again. For example, pre-cancer Wonderful Wife and I would alternate nights putting The Progeny to bed - supervising tooth brushing and then reading with them. During and after treatment I was too tired, especially by the end of the day.

The Progeny were resistant at first - they had become accustomed to Mom in the evening. But after the first night or two we got back in the swing of it. It's been such a novelty for them that so far we haven't done as much reading as usual; we've been spending time just lying together and calmly talking. That's been nice.


I've been going to work three days a week for the past three weeks, and working many of the other days at home. I still take some time to go walking/hiking when the weather is pleasant because those walks have done wonders for my energy level. This past week that didn't happen due to medical appointments on a couple of days.

I'm not fully effective at work. It's been so long since I've had to think about long term strategic-type things that my brain doesn't want to do it. So far I've been focusing on short-term tasks. Even with those, I find that concentration and problem solving are subpar. But it's getting better with each passing week.

The social aspect of being at work has been unexpectedly beneficial. Having lunch with my coworkers and friends has been very pleasant. Everyone is so happy to see me back - it's heartwarming. People gave me happy congratulations when they learned of my clear scans earlier this week.


Overall I feel like I'm doing quite well. Compared to a month ago and especially two months ago I am hugely improved. In the middle of the crap it felt like I would never get to this point, but here I am.

Saturday, November 9, 2013


Two more milestones reached yesterday, one small and one big.

We were headed to Dana-Farber and we still had a bunch of liquid meds on the "cancer counter" - a part of our kitchen counter that has been devoted to cancer since June. I'm no longer taking any medications, so it was time to get rid of them. It is not recommended to flush prescription medicines down the toilet or dispose of them in the garbage. And community drug turn-in days (of which there is one this weekend in our town) don't accept liquids. But the Dana-Farber pharmacy is happy to take meds back and dispose of them properly, so we rounded them up and reclaimed the counter for normal use.

This photo was actually taken after some meds had already been removed. This is probably about 2/3 of the number of meds that were there at the peak.

I've been noticing the empty counter every time I walk by today. Another sign of progress.

The other, larger milestone is that I had my feeding tube removed!

Here's a photo of the extra appendage I've had for the past four and a half months.

Some head and neck cancer patients choose to undergo treatment without a feeding tube. Michael Douglas did it. But he also lost almost twice as much weight as I did - and I lost more than enough.

Bob, a fellow patient that we saw most days at radiation treatment, also opted not to have a feeding tube. He lived on smoothies. But I can't imagine trying to swallow several smoothies a day during the worst of treatment. If you recall, I didn't put anything in my mouth for almost two months. I know Bob had significant difficulty toward the end.

There is only a small window of time at the very start of treatment in which one can have the tube placed, since it is a surgical procedure. One's immune system takes a dive a few days after the first dose of chemotherapy and then surgery is out of the question except in an emergency. There would be too much risk of infection. So you can't change your mind later.

I was very grateful for my tube. After hearing what treatment would be like I never even entertained the idea of forgoing a tube.

I had read about removal back around the time I had my tube placed. I was curious how they remove it and was surprised to learn that they literally just pull it out!

Here is a photo of what the whole feeding tube looks like. The bar-shaped piece sat outside my stomach and is a stop to keep too much of the tube from passing into the stomach. The round collar at the end is a "bumper" that sits inside the stomach and keeps the tube from coming out. It is made of a soft rubbery plastic or silicone.

When the tube was first placed, the bar-shaped stop was snugged up against the skin to apply pressure and keep the wound from bleeding. A few days after placement NP Kate loosened it a little (moved the stop father from the skin). Once the hole (formally called a stoma) was healed around the tube, I could slide the tube in and out about half an inch or so. No part of the tube ever adhered to any part of me.

I found it surprising that such a device wouldn't leak. Apparently the stomach muscle is strong and compressed enough to provide a seal. The stoma did produce a very small amount of crusty stuff every few days. It was easily removed with a Q-tip in the shower.

But getting back to removal... NP Kate removed it yesterday using the standard technique: grasp the tube and pull. The soft bumper collapses enough to pass through the stoma.

I had read that it stings for a minute but then subsides. That's what happened. As NP Kate warned me, it's quite jarring. I was lying on my back on a exam table. Wonderful Wife says my feet flew up in the air.

NP Kate applied a fair bit of pressure immediately afterward to stop any bleeding (there wasn't much). The pressure was more painful than the direct aftermath of removal.

She told us that by the time we got to the parking garage the stomach wall would have closed and I wouldn't be ejecting stomach contents through the stoma. The skin takes longer to heal.

My stomach was pretty sore for the rest of the day. It felt like I had done too many sit-ups. But when I woke up this morning the pain was substantially reduced. Today I have only really noticed it when I cough or sneeze.

After 24 hours it was OK to remove the dressing and take a shower. I was worried what I'd find under the dressing but it was almost nothing. The stoma is partially collapsed and has a scab in the center. No big deal.

I had become accustomed to having the tube sticking out of me, but it's nice to have it gone. For example, when drying off after a shower I had to be careful not to entangle the towel in the tube and accidentally pull on it. Now I can just dry off normally.

In the photo of me above you can see a large white clamp on the tube. That's how one keeps the stomach contents in the stomach. I forgot a couple of times and left it unclamped while hooking up or unhooking food, and if I coughed during that time stuff would squirt out of the the tube. It only had to happen one or twice and the lesson was well learned.

The clamp was also the only rigid part of the tube, and it had sharp-ish edges and corners on it. That prevented me from lying on my stomach, which happens to be my favorite sleeping position. I look forward to sleeping on my stomach again!

So I've passed one more milestone on my way back to normalcy.

Wednesday, November 6, 2013

Why Am I Here?

I had a conversation with a coworker last week in which he expressed gratitude for this blog. He also said that he doesn't know if he could be "this open" if it were him.

That made me think about my motivations writing for the blog. They've always been implicit for me but it's interesting to write down.

One of the most practical reasons, as my friend Connie points out, is that is helps avoid me having to tell many people the same thing about my current status.

It's efficient.

Another reason is to inform future tongue or head and neck cancer patients. When I was originally diagnosed, Wonderful Wife immediately consulted the intertubes to find out what she (and I) was in for. She found several blogs by former patients that gave a fair bit of detail about their experiences. Even though it sounded rough, she appreciated being informed. It allowed her to set her own expectations and not be surprised by events. She was also heartened by the fact that the writers often were years out of treatment and doing well. So part of my motivation is to pay that forward.

Also, I'm a teacher at heart. I love to dive deeply into a topic and then teach it to others. In this case I didn't choose the topic but I could still follow that pattern. To be honest, a little bit of that is showing off. I grew up in a family where spouting knowledge was rewarded (at the dinner table, especially) so I can tend toward being a know-it-all. Hopefully I've learned enough tact that I'm not as annoying as when I was fifteen or twenty.

Many readers have given me positive feedback on my writing here. People have told me they have learned a lot along the way; that even though they have been close to other people with cancer they never understood the full experience until now. That's very gratifying to the teacher in me.

My work happens to involve helping scientists discover and develop new medicines, including cancer drugs. That coworker I mentioned in the first paragraph? He learned from this blog how primitive existing cancer treatments are and he feels even more motivated to help find better ones.

I have more than a touch of ADHD, and part of my particular makeup is a fascination with details. So another aspect of this blog is that I like to document every little thing that happened along the way.

The blog has also been a way of venting - verging on (or explicitly devolving into) whining. It helped to shout to the world, "This sucks!"

The reason that's most personal for me, though, is a desire to be honest. Back in July, in the post titled "A Crying Shame", I wrote about a long self-remodeling process through my 20's and 30's. One of the most important lessons I learned on that journey was the value of honesty. With myself first, but also with others. Prior to that time I felt a need to present myself in ways that weren't true. Once I ceased that I found life to be much easier and more enjoyable.

So a big part of why this blog exists is for me to share my experience as honestly as I can.

Tuesday, November 5, 2013

All Clear

Today I met with Doctor Chemo (medical oncologist) and Doctor Cutter (ENT and surgeon) at Dana-Farber for follow-up and to discuss the results of my scans from October 23.

The headline:

Scans are clear.

I am cancer free.

I was expecting that, but it's still nice to have it confirmed. I have to admit that I had a little sliver of concern that my scans might not be clear. It does happen.

The radiology reports from the two scans are at left. Click on the images to embiggen.

The first is the CT report. This scan allows the radiologist to closely examine the anatomy. The main finding there is "...improvement of prior tongue base mass. No new neck mass is noted."

They also noted some lymph nodes that are still enlarged, and that there is post-treatment thickening remaining at the base of my tongue and my epiglottis.

I experience that as coughing while eating because food gets stuck a little bit on the way down. During my doctor visit Doctor Cutter used a scope to look down my throat through my nose (not nearly as unpleasant as it sounds - this is the fifth or sixth time I've undergone the scope). The base of my tongue looks much more normal now. But as the CT report says, the base of the tongue and the epiglottis are still swollen from treatment. Also, the normally round shape of my throat is flattened significantly. Doctor Cutter told me that will return to normal but it can take a couple of years. But my throat is narrowed, which is also contributing to the mild difficulty swallowing.

Doctor Cutter told me the lymph nodes are completely normal. He also told me that as my neck heals and softens, "lumps" will become apparent. But they are usually just normal structures that the patient never noticed before. He advised that if I find a lump on one side, check the other side. If they are the same, it's normal.

The PET-CT report is next. It's key findings are distributed through the various sections, with each including the phrase, "There is no FDG-avid malignancy".

FDG refers to fludeoxyglucose, which is the radioactive sugar I was injected with prior to the PET scan. "FDG-avid" refers to glow in the PET image. This report indicates that nothing was glowing where it shouldn't be.

No cancer.

There is one interesting line in the chest section: "Postradiation changes seen in the apices right greater than left." "Apices" refers to the upper tips of the lungs (each referred to as an "apex"), which were apparently in the radiation field. This is also normal after neck radiation - apparently the tips of one's lungs reach all the way up past the collarbone. This will also heal over time.

As of today I move from the "treatment" phase to the "surveillance" phase. For the next two years, I will see a doctor every 2-3 months for a physical exam and scoping. Since the site of my tumor is visible, they don't do imaging scans to monitor for recurrence. They just look at the site directly.

Doctor Chemo told me that the highest risk of recurrence for this cancer type is in the first two years after treatment.

I also now move into "survivor" category and I'll receive advice on survivorship.

I expected this result all along but I still feel a pretty big sense of relief to hear that I am officially cancer free today.

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.

Sunday, September 29, 2013

The Flying, Fickle Finger of Fate

It's been a weird few days.

I mentioned before that Wonderful Wife and I have been enjoying the pleasant fall weather by getting out for longer and longer walks to build my stamina. On Thursday we went to our favorite place: Mass Audubon's Ipswich River Sanctuary. I had in mind a walk along a longer trail that we had only done once before. I felt plenty strong enough to do it. I mapped it just now and it is just under three miles.

I felt fine during the walk/hike. I was feeling a little tired by the time we got back to the car. But soon after we got home I felt completely exhausted. Painfully exhausted, in fact, all afternoon and evening.

Friday I woke up still pretty exhausted. I spent the entire day resting.

Every night for the past several weeks my sleep has been interrupted many times per night by drainage from my sinus infection. I finished the most recent course of antibiotics on Friday. I was expecting at least a temporary decrease in symptoms, but Friday night I had the opposite. The drainage started making its way toward my lungs and causing a deeper cough.

Not a good sign.

I managed to make it all the way through treatment without aspirating any mucous and now it's going to get into my lungs?

Yesterday I felt really horrible all day. It seemed clear that I had a cold or flu. The prospect of feeling miserable for several days through a cold or flu was really depressing. Especially given that I was expecting to feel better as the sinus infection at least decreased.

Then in the afternoon and evening I developed a fever. It got to 102 at one point. I was curled up in a ball. I am so tired of feeling crappy.

I dread the nights anyway these days because of the crappy sleep, but I was really dreading last night with a fever and cough and body aches.

I took some ibuprofen and tussin (loosens the mucous) before bed and, surprisingly, had a "normal" night by recent standards. I still woke up several times to get rid of mucous, but I didn't feel especially bad and I went back to sleep every time. I even slept until 8am, which is later than I've been able to sleep lately.

Today I feel tired and weak, but the body aches and fever are gone. Mucous production is way up, though.

Very weird. I never know what my body is going to do next.

I started the day with some oatmeal but it tasted very bad due to the sinus discharge. So I'm back to tube feeding for a day or two. I got in very few calories yesterday but I'm trying to get back on target today.

Wednesday, September 25, 2013

Another Piece of Red Left My Atlas Today

The title comes from an old Boomtown Rats song. It refers to the collapse of the British Empire. The disappearance of more pink cells from the spreadsheet of my lab results reminded me of the song.

As of today, my white cell counts are all back in normal range! I have a functioning immune system again!

That means soon I'll probably get off my last remaining drugs. I'm currently taking Flucanazole to prevent thrush. Thrush is an opportunistic fungal infection of the mouth that occurs when one's immune system is compromised. I've had it several times during and after treatment.

My rebuilding immune system should also help finally get rid of the sinus infection.

My only remaining blood abnormality is anemia. Apparently that will take a while longer - it takes longer for the bone marrow to produce red cells and for them to mature. I can try to eat more iron but Nurse Practitioner Kate says it probably won't make that much difference. My blood iron levels are healthy already.

The three numbers in the lab results that are still pink that are most pertinent are HCT (hematocrit: the percentage of blood volume that is red cells), Hgb (hemoglobin: the stuff that carries oxygen) and RBC (red blood cell count).

I also currently have excessive monocytes (a type of white blood cell). That is probably due to the sinus infection.

Another value still out of range is RDW: red cell distribution width. Mine is high, meaning the variation in size across my red blood cells is higher than normal. My guess is this is a reflection of the fact that I have a lot of immature (small) red blood cells.

In other news...

I have had a couple of very good days yesterday and today. During my visits today with the nutritionist and nurse practitioner it hit home that I really have made a ton of progress. The nutritionist was very impressed with the variety and volume of what I've been eating. Nurse Practitioner Kate was pleased with all the drugs I'm no longer on.

After my appointments I was hungry. We went to the Dana Farber cafeteria and I had my first meal away from home since June. I had some cream soup and a yogurt smoothie. It felt like quite the milestone to me.

And it's connected to another milestone: today I will get all of my 2000 calorie target through my mouth. I only used the feeding tube to get in extra fluids today.

Perhaps there is light at the end of this tunnel!