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.