Sunday, December 14, 2014

Metal Nipple Tags

How's that for a title?

Wow, it's been almost three months since my last post! I have really meant to post more. I have a list of a dozen topics I want to write about. But life just keeps getting in the way. That's a good thing. I'm back to my busy self.

On November 17 I went for my most recent surveillance checkup with Doctor Rad at Dana-Farber. It was a little more than a year since treatment. At that point they order a chest x-ray to check for any metastases in the lungs, which is the most common site.

Before the x-ray the technician had me stick those little band-aids in the photo to my nipples. Doctor Rad told me later that sometimes the nipple is not clearly identifiable in an x-ray and can be mistaken for an abnormality. So they have the patient wear these markers. Notice the metal beads in the center. Those show up the x-ray and inform the radiologist of the nipple locations.

My result?

All clear, of course. Had it not been you would have heard about it hear long before now!

I forgot to remove the nipple markers until the next morning in the locker room at work, after I had been walking around shirtless for a few minutes.

I mentioned to Doctor Rad that I was now past the halfway point to two years since treatment. At some point along the way I had heard (I thought from one of my doctors but perhaps not) that my particular kind of cancer, if it is going to recur, almost always does so within two years.

Doctor Rad told me that their main concern at these visits is not recurrence. They don't expect that to happen. Their main concern is the long-term side effects of treatment such as dental problems from high radiation doses to the mouth. It damages the bone regeneration capacity in the jaw and teeth and can lead to serious dental problems. It also means I may never again be a candidate for a dental implant.

[Something I learned in my work: bone is not just a dead rigid material like many of us envision it. Bone is constantly being "remodeled". Bone cells called osteoclasts are constantly tearing down bone and other cells called osteoblasts are constantly forming new bone. That wikipedia article says about 10% of the adult skeleton is replaced in this fashion every year. Some osteoporosis drugs work by blocking the activity of osteoclasts and thus slowing bone recycling.]

My surveillance appointments continue to get wider spacing. My next appointment is not until March and the next one after that is July. Wonderful Wife and I actually miss them! Doctor Rad and Doctor Chemo feel a little bit like family and we always love to see them.

I continue to be amazed how much "cancer survivorship" remains on my mind. I still think of it many times every day. As I've written before, I'm reminded every time I eat and don't have enough saliva. I still panic just a little when I find myself in an eating situation where I don't have access to plenty of fluid, although I'm learning that I can make it, depending on the moisture content of the food and my patience.

Saliva and taste still haven't recovered much if at all over the situation a year ago. I still can barely taste sweetness and that particular taste goes away quickly after the first bite or two. Salty and savory things taste good enough but are still greatly diminished compared to pre-treatment. Saliva is still greatly diminished and is not stimulated by eating. As I wrote back in September I tried Pilocarpine, a drug that stimulates saliva in some people. It did nothing for me. I took it for three weeks and stopped.

I'm mostly accustomed to those side effects now. Although I keep eating sweet things and hoping they'll taste good!

I also think of cancer every time I put on my new slimmer wardrobe. Like I've said before, I like that aspect.

Tuesday, September 23, 2014

99 Days

Memories of where I was this time last year keep surfacing. We keep talking about them as a family; we're grateful that this year is so much more normal.

Last weekend we went camping at Pawtuckaway State Park in New Hampshire. That's become an annual trip but last year we didn't make it. We thought about going, but I was still in pretty rough shape and we wisely stayed home.

I've been a newspaper reader since I was a boy. I think I've read at least one newspaper almost every day since I was perhaps eight or nine years old. I'm a dinosaur who still subscribes to an actual paper newspaper delivered to my front door every day. I read it over breakfast - at least the front section, the Metro front page and the Business front page. If I have gotten out of bed on time I get to read more of each section.

On the last page of the magazine section the Globe always includes the "This Day in History" feature. It always starts with a sentence relaying what day of the year today is and how many days remain in the year.

It's a measure of how badly I was feeling that I stopped reading the newspaper for a month or two. A year ago today is when I began reading it again. I remember, because that day "This Day in History" reported that there were 99 days remaining in the year.

That's also true today.

Tuesday, September 16, 2014


When one becomes a patient at the Dana-Farber Cancer Institute (heaven forbid that should happen to you!), one is issued a patient identification card. You then show that card every time you check in for an appointment. As you know if you read along here, one has many appointments. So that card was always on top of all the other cards in my wallet.

Today I needed to call Dana-Farber to reschedule my next surveillance appointment. As I dug out my card, I noticed that it has become buried fairly deeply in the stack. Treatment is receding into the past.

I've mentioned before that I don't really have vivid memories of the treatment experience. I remember mostly the "good" parts - namely all of the great care I received from family, friends and health care providers. That's kind of how my memory works in life.

(One of the secrets of staying young, if you ask me.)

However, for months I've intended to write about how prominent cancer still is in my mind. I think about it many times every day.

I'm reminded of cancer every time I eat, for example, since taste and saliva are still profoundly affected. The lack of saliva also leads to thicker mucous in my throat so I'm constantly clearing my throat and fairly frequently coughing up a little wad of thick gunk.

I'm still inclined to blurt out that I recently had cancer to people I don't know well. I find myself thinking about ways to work it into conversations (although thankfully I usually refrain).

It feels like a surprisingly significant part of my identity.

I expect that will fade with time.

Here's one more piece of identity. I was talking to a friend about the saliva issues and he told me he had a very positive experience in the past with Pilocarpine, a drug that can help stimulate saliva. At my last Dana-Farber appointment I asked Dr. Chemo for a prescription, which she was glad to write and send to my pharmacy.

But then I didn't pick it up for several days. And I still haven't gotten in the habit of taking it.

Part of the reason is probably that I have to take it three times a day and it's difficult to start a new habit like that.

But more than that, it feels like it threatens the status quo. The side effects are part of that new identity and perhaps I'm more emotionally wedded to it than I would expect.

I've also had moments of concern that it might produce too much saliva - a problem that is very unlikely!

On the topic of memory, I had contact today with the wife of Big Sister's oncologist colleague who kindly gave me remote consultation right after I was diagnosed. I was expressing my gratitude to her to pass along to her husband. I choked up at my desk at work typing those words. For a moment I could clearly remember the fear we felt during that period and the gratitude we felt for information that gave us just a little peace of mind.

I feel like I'm doing a pretty good job of getting on with life but I'm surprised how much cancer baggage I'm still dragging along.

I guess it was somewhat of a profound experience.

Tuesday, August 26, 2014


This morning I went for one of my periodic checkups at Dana-Farber. I have visited approximately every two months since completing treatment a year ago.

The bottom line: All Clear.

We trade off seeing Doctor Rad (my radiation oncologist) and Doctor Chemo (my medical oncologist). Today it was Doctor Chemo.

One of the advantages of my particular cancer type is that the site can be viewed directly with a fiber optic scope. During every visit the doctor sticks the spaghetti-sized scope in my nose and looks down my throat.

I hid the image for the squeamish, but for everyone else click here or on the image to see the actual image from the scope screen.

The image is as though you are diving down my throat: the top of the image is toward the rear of my neck and the bottom is toward the front. The big flappy thing is my epiglottis. The entire "floor" of the image is the base of my tongue (the tongue extends down into the throat).

Doctor Chemo remarked that my throat has undergone significant healing in the past few months. You can see that in the comparison between February and today. In the February image the base of my tongue is rough and red whereas today it is smooth and pink.

I was under the impression that I was already in the "surveillance" period, but Doctor Chemo said I actually have just entered that period since I am now a year out of treatment.

My next checkup, with Doctor Rad, is in late October. At that time I will be just about a year from my last imaging study (a PET/CT scan) and I will get a chest X-ray. Sometimes this cancer type spreads to the lungs so they will check for that.

I don't worry too much about these checkups. I assume I'm cured. But it's always nice to have updated confirmation.

Monday, August 25, 2014

Have the Teens in Your Life Been Vaccinated Against HPV?

If you've been reading here for long, you know that the type of cancer I had is now preventable with a vaccine. My cancer was caused by HPV, Human Papillomavirus. It's the same virus that causes cervical cancer, which can also be prevented with the HPV vaccine.

Since 2006, the CDC has recommended that ALL girls aged 11 and 12 receive the HPV vaccine.

Since 2011 the CDC has recommended that ALL boys aged 11 and 12 also receive the vaccine.

The vaccine is delivered in three doses spaced over six months.

Clear CDC recommendations notwithstanding, the vaccination rates are still too low. As of 2013, only 57% of girls and 35% boys had received at least one dose by their 13th birthday.

In a recent op-ed in the New York Times, pediatrician Dr. Paul Offit lamented the low vaccination rates and encouraged his colleagues to make more effort to recommend vaccination to parents. He specifically advised providers to remove sex from the conversation (HPV is sexually transmitted. Most Americans have been infected. Most people clear the infection on their own, but some don't.) and focus on the fact that HPV-related cancers are the only cancers that can be prevented with a vaccination.

Dr. Offit concludes thusly:

Millions of adolescents aren’t getting a vaccine to prevent a known cause of cancer. It takes about 20 years for an HPV infection to progress to cancer. That’s when the bill is due. Given current rates of immunization, somewhere around 2,000 adults every year whose parents had chosen not to give them the HPV vaccine will probably die from a preventable cancer. It’s unconscionable.

I agree completely.

Surprisingly (to me), in the CDC National Immunization Survey (NIS-Teen), the main reasons parents gave for not planning to vaccinate their children against HPV had nothing to do with sex. The main reasons parents gave were:

  1. lack of knowledge of the virus and vaccine
  2. belief that the vaccine was not needed or necessary
  3. lack of recommendation from their pediatrician

As of March 2014 more than 67 million doses of the vaccine have been delivered. The safety of the vaccine is well-established.

If you are the parent of a teen, please vaccinate him or her. If you have a teen in your life, perhaps a niece or nephew, please speak to their parents about HPV vaccination.

It could save the teen's life.

Sunday, August 24, 2014

62 Milestones

I've written before about my cycling history. I've been a serious cyclist since about 1994, starting with mountain biking and then switching to almost exclusive road biking around 2000. My seriousness increased through the oughts to the point where every year I would build up to a 200-mile one day ride (Seattle to Portland) and a 150-mile ride around Mt. Rainier (RAMROD). I would also ride in a 150-mile Bike MS ride every September that was a fundraiser for Multiple Sclerosis care and research.

I started commuting by bike a majority of the time in 2005. Given all that, I was generally in very good physical condition.

I fantasized that I would keep riding at a diminished level right through cancer treatment.

No way.

If you read along here during that period, you know I spent a good deal of time curled up in a recliner just waiting to emerge from the other end of the tunnel of shit. I wasn't even going out for a walk around the block.

Then through recovery I still felt pretty weak. It wasn't until April - eight months after treatment ended - that I felt strong enough to ride my bike to work again. I've slowly increased that since then and am now bike commuting almost every day.

But those ten months off the bike, plus the big weight loss during treatment, did a real number on my conditioning and strength. During my commutes this summer I have felt a lot weaker than in the past.

The main way to remedy that is to ride more miles.

My new employer makes several successful drugs for MS, and there is a company cycling team that participates in several Bike MS events in New England. That was the impetus and opportunity I needed. Last week I made a last-minute decision to ride the 60-mile route at the Bike MS: New Hampshire Seacoast Escape. I figured that since it followed the coast of Great Bay for the entire route it couldn't be too hilly.

I was a little nervous that I wouldn't make it. My commute is only 9 miles each way and I didn't know how much endurance I would have.

Well, the answer is: plenty.

I ended the ride with 62.5 miles on my bike computer. Not only did I have no problem completing the ride, but I felt fine afterward and had no soreness or fatigue. I remarked to Wonderful Wife later in the day that I felt less tired than I do on a normal Saturday afternoon!

The route was very picturesque. Some of it was on busy roads, but the portions on back roads were quiet and pleasant. From about mile 40-50 the route was along the sea shore near Rye Harbor State Park. That portion had beautiful smooth road, a nice shoulder, little traffic, a beautiful view of the ocean and even a tailwind. It reminded me of my favorite cycling experiences of the past.

It's very gratifying to be back on the road to cycling strength. The summer is the always the peak of conditioning, so my goal now is to maintain what I've got and, starting next spring, try to approach my past level of fitness.

Friday, August 8, 2014

Happy Anniversary!

One year ago today was my last radiation treatment.

I don't often reminisce about how I was feeling back then. Looking back at my blog post from a year ago today, I was not doing well. I'm glad that it's hard to remember!

How am I doing a year after treatment ended?

Very well, thank you.

The new job is going well, and we just returned from a delightful two-week vacation visiting family and friends back home.

Cancer-wise, things are pretty much the same.

Taste might be improving, but the change is so gradual it is unnoticeable. What I mainly notice is that I continue to have some taste sensation, albeit diminished, well into a meal. Previously my sense of taste would diminish quickly after the first few bites of each meal.

The main thing I still can't taste is sweetness; I can sense almost none.

I don't think saliva production has improved much, but perhaps a little. Recently I've had a couple of occasions where the available fluids were limited and I've managed to make it through a meal on a single beverage. It might just be because I chewed more.

The taste and saliva issues are perhaps a mixed curse (the opposite of a mixed blessing). It sucks that food has so little enjoyment for me but on the other hand I really like being 156 pounds!

As you will recall, my particular type of cancer, oropharyngeal squamous cell carcinoma caused by Human Papillomavirus Type 16, has a very high survival rate (above 80%). There are ongoing clinical trials to determine whether a less aggressive treatment regimen would still produce comparable survival. I received high dose cisplatin and seven weeks of radiation. The most directly applicable de-intensification trial, NCT01530997, has the following description:

The purpose of this research study is to learn about the effectiveness of using lower-intensity radiation and chemotherapy to treat human papillomavirus (HPV) associated low-risk oropharyngeal and/or unknown primary squamous cell carcinomas of the head and neck. The cure rate for this type of cancer is estimated to be high, > 90%. The standard treatment for this cancer is 7 weeks of radiation with 3 high doses of cisplatin. Sometimes surgery is performed afterwards. This standard regimen causes a lot of side effects and long term complications. This study is evaluating whether a lower dose of radiation and chemotherapy may provide a similar cure rate as the longer, more intensive standard regimen. Patients in this study will receive 1 less week of radiation and a lower weekly dose of chemotherapy followed by a limited surgical evaluation.

I've often wondered what decision I would have made had I been presented with the choice to participate in such a trial. The radiation damage that caused my taste and saliva issues is cumulative, so less radiation would be a good thing. The lower total chemotherapy dose may also have avoided the hearing loss I've experienced. But by participating I might also be decreasing the odds of a cure.


If you had asked me a few months ago I probably would have opted not to participate. But now that I'm realizing the side effects are likely to be at least partially permanent I might give such a trial more consideration.

It's water under the bridge now. But if you happen to be a new patient with this type of cancer and you haven't started treatment yet, I encourage you to consider your options.

There are two additional trials that are testing other forms of treatment de-intensification in my cancer type: NCT01663259 is using a targeted therapy (cetuximab) in place of platinum chemotherapy; and NCT01088802 is reducing the total radiation dose while leaving the chemotherapy regimen the same.

While searching for those trials, I noticed there are also multiple trials of various mitigation strategies for the side effects of treatment, such as a mouth rinse that might make the mucous less thick and a clinical trial of MuGard, a product that claims to create a protective coating in the mouth and prevent or mitigate mucositis. Those trials might help future patients have an easier go of it. Less mucositis would cause less mouth pain, which in turn would lead to reduced opoid use, which in turn would alleviate the opoid-induced constipation that was my worst side effect.

But back to the topic at hand. I'm very glad to be a year out and doing fine.

Happy Anniversary to me!

Thursday, July 10, 2014

A Fork in the Road

People often remark that cancer changes their lives. Some more profoundly than others.

I didn't feel that I learned any explicit life lessons, but I realize now that there were more subtle effects. One of them resulted in my decision to change jobs after eight years at my former company. I started my new job last week.

I had been increasingly unhappy in my old job through 2011 and 2012. In my business and in Boston/Cambridge, I have the luxury that jobs continuously come looking for me by way of technical recruiters (aka "headhunters"). In the spring of 2013 I started responding to them and entertaining other opportunities. I was well along in the process of scheduling a final interview at an attractive company on the day I was diagnosed with cancer.

So that was a bit of a time out.

If you've been reading along you know how slow was the return to work and then to normal intellectual and physical energy levels.

Then, as I wrote in April, I became quite happy with all areas of my life including work. But I still had memories of that unhappiness, and concern that it could return. I also couldn't see a clear path to new opportunities that would help ensure long-term happiness in that organization.

When one builds software, one is building it to accomplish something. The problem area the software is supposed to address is called the domain. If you work at Amazon, you build code in the domain of e-commerce. If you work at Facebook, you build software in the domain of social media. I work in the domain of drug discovery.

Most software developers work to gain just enough domain knowledge to allow them to build the appropriate software. The software is their real focus. I'm a bit of a strange bird in that I have an insatiable scientific curiosity so I tend to go deeper into the domain than most colleagues I know.

Part of that is due to the fact that I'm old. I've been building software for a living for 31 years. I still love that part of my work but it is picking the brains of scientists on a daily basis that really excites me these days.

In my former job the company was organized in such a way that my contact with scientists was indirect and getting more so. In my new job, I work in a scientific group. That was the main factor that led me to change.

But back to cancer: it gave me the rather cliché realization that life is short and one shouldn't spend time being unhappy if one can do something about it. Chalk this up as one of those cancer-inspired new beginnings.

Thursday, June 26, 2014

New Pants

It's been way too long since I've posted.

I'm still here!

And I have new pants! That fit!

The chart is of my weight over the past year. As you can see it's been holding very steady ever since it went over a cliff at the end of treatment.

I actually quite like my new weight. Although I wouldn't recommend the diet plan.

My clothes were all pretty loose. A month or so ago I realized I wasn't going to gain that weight back any time soon and I'd enjoy wearing clothes that fit. So I've bought a few pairs of pants that are a size down. I've even bought a couple of size small shirts that fit (I've worn medium most of my adult life).

My sense of taste is returning ever so slowly. I'd say it's maybe 40-50% of normal. I can taste savory and salty flavors the most, and some foods in those categories I can even taste all the way through a meal.

I can hardly taste sweetness at all. And it goes away after a bite or two. Ice cream is particularly unenjoyable. Although I'm getting a little pleasure out of some types of candy.

I think the saliva might be coming back a bit, too - but not much. I usually drink 2-3 large glasses of fluid with a meal to wash it down.

I make a lot of trips to the bathroom these days because of all that fluid intake. I still feel thirsty most of the time.

I've been eating the same breakfast almost every day since I first started eating again: a big bowl of cream of wheat, a piece of toast with Nutella and the crust cut off, and a glass of orange juice. I put a ton of brown sugar in the cream of wheat but still can barely taste the sweetness.

Lunches on workdays have also become a normal sized meal. I can make it through a sandwich or a rice bowl with meat. I'll try most anything these days. All that chewing and mixing with fluids in order to swallow makes me a very slow eater. And if I go out to eat, for example at a food truck, I have to make sure to get enough fluid. When I run out of fluid I have to stop eating.

I just went to Dana-Farber for my most recent bi-monthly surveillance visit this week. All clear.

For the first time, Wonderful Wife didn't accompany me. She had another conflicting appointment. It so happens I had just seen my ENT last week and he had scoped my throat so we knew there wouldn't be any unpleasant surprises at Dana-Farber

I saw Dr. B the ENT because my ears feel full, like there is fluid in my eustachian tubes. He couldn't see anything obvious. Radiation to the neck can cause scarring in the tubes and constrict them, causing them to drain improperly. In addition to the feeling of fullness and even more decreased hearing I also have increased, thick mucous in my throat that started in March or April. I have to spit it out several times a day. The Progeny do not appreciate it.

Dr. B sent me for a new audiogram (hearing test) because that can indicate if there is an inner ear problem. The results were identical to the audiogram I had in November so inner ear problems are ruled out.

I'm now on Flonase on the theory that the mucous is allergy related. I'll try that for a few weeks and see if it makes a difference.

I have some other news, but I'll just tease you for now and promise to write another post soon.

The lack of posts recently is the result of being very busy. That's a good thing. It's normal.

Saturday, May 17, 2014

Who the Heck Are You?

This is the 130th post on this blog. Readership has grown steadily since I started writing here almost a year ago.

I know that many of my coworkers and friends read it regularly but I don't have good information on who my audience really is. The page views are high enough now that I know there must be many people I don't even know.

I'm very curious who you are! Knowing who you are and what brought you here will help inform the subjects I choose to write about going forward.

To help me learn about you, I've created a very brief reader survey. If you would, please take a few minutes to take the survey. It's completely anonymous unless you choose to tell me who you are.

Click here to take survey

I'll post the results here in a week or two.

Thank you!

Saturday, May 10, 2014

Anno Carcinos 1

One year ago today, at 7:45 on a Friday morning as I was about to leave for work, my phone rang.

It was my doctor, who had sent me for a CAT scan the previous day because of a lump she had noticed three days earlier on the side of my neck.

"Blah blah blah blah malignancy blah blah blah," was what I heard her say.

"Holy Shit!" was what I thought.

Thus began the journey.

That seems like ages ago. I turn 54 the week after next. I feel like I've been 53 forever.

I waited a couple of weeks before I told my parents and siblings. I wanted to know the actual diagnosis first. (In retrospect, that was silly.) When I told Big Sister, who has worked in the cancer field for decades, she gave me tons of good advice. She told me that it was going to be a tough road but that I'd get through it. And she told me that I wouldn't feel like myself again for a year.

Of course Wonderful Wife and I were focused on the immediacy of treatment. That "year" sounded abstract.

Here we are.

Right on schedule, I'm feeling like myself.

Actually, I'm feeling like my best self.

I realize now that my energy level (both physical and mental) had been decreasing for some time when I was diagnosed. I don't know if there was any cancer-related reason for it but looking back I had been feeling less "alive" for perhaps a couple of years. Now I feel like what is "normal" for me: activated and organized and productive.

Yesterday I was so engaged in my work I didn't want to stop to come home. It's been a long time since I've felt that.

On weekends lately I make ambitious lists of chores and tasks for myself and I've been doing pretty well at knocking them off.

I'm joyful today.

Happy Anniversary to me!

Wednesday, April 23, 2014

A State of Health

Last week Wonderful Wife and I visited Dana-Farber for my bimonthly surveillance checkup.

The punch line? All clear.

I'm still cancer-free.

It has now been more than eight months since treatment ended. I'm one third of the way through the two-year period in which my type of cancer recurs if it is going to.

Dr. Chemo did a thorough exam of my neck and tongue and then put the scope in my nose to look directly at the base of my tongue on video. All good.

She told me my neck feels "exquisite".

Wonderful Wife likes to touch my neck. The skin is still hairless and baby soft.

Before the exam I had blood work for the first time since the fall. Dr. Chemo told me I am hypothyroid - my thyroid is not producing enough thyroid hormones. I have to start taking thyroid supplements, which I am likely to take for the rest of my life.

Strangely, the main symptoms of hypothyroidism in adults are fatigue/lethargy and mental fogginess. I feel the opposite of that. Over the past few weeks I'm really feeling like my old self - energetic and in "getting shit done" mode, both at work and at home. I feel energized both mentally and physically.

The main remaining side effects are pretty much the same: lack of taste and saliva. I think taste is coming back a little. I'd still put it somewhere around 30% of normal (if that) but once in a while something tastes kind of good for a change. I'm still well inside the normal window for those issues to improve.

In other news: I've started riding my bike to work again. Before cancer I had commuted to work by bike for eight years. The last time I had ridden was the day before my first chemo treatment last June. I worried that with significant weight and muscle loss I would feel very weak when I got back on my bike. I was pleased to find otherwise. I'm definitely not as strong, obviously, but I'm not nearly as far down the fitness ladder as I thought I would be.

Perhaps some of that is do to walking. I walk a mile each way from the train station to my office. I have a Fitbit that I obtained as part of a research project at work three years ago and I carry it everywhere in my pocket. I've been averaging about 15,000 steps per day for the past several months. I guess that counts for something.

As I wrote in the last post, I'm feeling quite happy. This morning I was especially happy on my way to work even though I was walking in a light rain.

We got a puppy at the end of February after years of consideration and months of careful thinking about breed and the responsibility. Rhodie is an English Springer Spaniel. I've been wondering today how much she is contributing to this happiness I'm feeling. I was the most reluctant family member when it came to getting a dog, but I think Rhodie is turning me into a dog person. She is so happy to see me in the morning and when I get home from work, and so sweet when we put her in her crate at our bedtime. I suppose that has to be contributing at least a little.

Regardless of the reason, I'm enjoying life today.

Tuesday, April 15, 2014


That is what I am these days.


I've written before that back around the new year I was feeling pretty depressed. About as depressed as I've ever been, in fact. Which is probably not too depressed by clinical standards. I'm normally a pretty happy guy.

Part of that was normal post-cancer depression. As I've mentioned before, lots of patients experience it. One is so focused on the cancer battle while it is going on that "normal" life afterward can feel aimless.

For me, it was combined with feelings about work. I've been working in the same field for more than 30 years. During that time I've had several periods of burnout. That's probably pretty normal.

It so happened I was deep in my most recent period of burnout when I was diagnosed with cancer. Those concerns got put on hold during the adventure, but I still had those residual feelings when I returned to work.

Fortunately, my absence from work provided an opportunity to shake things up a bit. There were some organizational changes while I was gone. I started working for a different boss at the end of the year (I like both my old and new bosses very much, but still it was another bit of change that turned out to be beneficial). Some of the older projects that had been weighing me down started wrapping up, and I found opportunities to shift my focus to work activities that inspire me more.

Another aspect is concern about my age and employability. I've done a pretty good job at staying technically relevant into my mid-50s. But my field (software development) is constantly changing and to some extent is a young person's game. Also, in a technical field most people eventually switch over to the management ladder in order to maintain an upward salary trend but I don't get nearly as much satisfaction from management work as I do from technical work.

I need to work at least another 15 years (unless I win the lottery, which I don't play!). So, I worry that if this job went away I might have difficulty finding a comparable one that would maintain our current standard of living and keep our retirement savings on track.

About a month ago, though, I decided I don't need to stress about these things: I chose to enjoy the fact that life is returning to normal and I'm feeling good and I'm able to be a functional dad and husband again.

I decided to be happy!

I have lived a pretty charmed life. Now that we're over that little speed bump, I can enjoy the enchantment again.

Hopefully my bimonthly surveillance checkup at Dana-Farber tomorrow won't alter that. We're pretty confident it won't. I'll keep you posted.

Tuesday, March 4, 2014

Next Stop: Normal?

In the latter half of February we made our annual pilgrimage to the winter nesting grounds of the Grandparents. One species winters in Palm Desert, CA and the other species winters in Tucson, AZ.

It's always great to escape the chilly, snowy, icy winter weather of New England in February. This year we had especially good weather in both destinations: temps were in the upper 70s F the entire time.

After the bout of depression I had over the holidays, I was sort of grinding it out at work. But I knew I had this trip to look forward to just six weeks later. I made it! The vacation itself was fantastic.



The Progeny enjoyed time with their grandparents and Wonderful Wife and I enjoyed some free time to see movies and be adults. We also did a bunch of fun things with The Progeny like ride horses, hike in the desert, ride go-karts and play laser tag. A perfect vacation. I didn't want it to end.

From a cancer point of view it signified that I'm approaching normality. I had a pretty good energy level throughout and felt happy and relaxed.

A few weeks ago I wrote that both of Wonderful Wife's parents were diagnosed with cancer in the fall. We thought that would mean that we wouldn't get to see them during our February trip. But their treatment schedules worked out such that they were able to be in Tucson after all. It was a real treat to see them and witness for ourselves that they are doing well.

My beard had started to recover in the past couple of months so I planned to try to grow it again over the break. That way I'd come back to regular life with a beard in place.

You can see the result in the photo.

Not too bad! It's symbolic for me to have back something visible that treatment took away. And I've had a beard more than not as an adult - it's a little bit more of my identity than I realized.

In terms of other residual effects of treatment, the main ones are taste and saliva. My sense of taste has been returning very slowly. I've had a few foods lately that retained flavor through an entire meal. It seems like highly seasoned foods do that best. One examples is marinated steak tips that are made by a local butcher. The past few days I seem to have had a weird bug that set my taste progress back a bit but I assume it will return.

Saliva is the bigger challenge, and is related to taste. Saliva contains a variety of enzymes that are the first stage of the digestive process. They serve several functions, including starting to break down some foods. In the process they also release flavors. So with insufficient saliva I don't get those flavors released.

The lack of saliva also makes some foods pretty unpleasant to eat. Specific examples are cheese and ground beef. Melted cheese, like, say, on an enchilada, resolidifies in my mouth into unpleasant globules that are hard to swallow. Ground beef gets chewed into a fibrous mass that is also hard to swallow. I expected the aforementioned steak tips to have the same effect, but the marinade seems to have done some of the work that saliva would do (that's the purpose of a marinade) and they were actually pleasant to eat.

Colloquially I say "I have no saliva," but that's not true. I just don't have very much saliva, and it doesn't increase when I put food in my mouth like it should.

Another result of sparse saliva is that my oral cavity doesn't get rinsed and I usually have pretty bad breath. I experience it as a sour taste in my mouth that is ever present. Wonderful Wife says it's pretty atrocious in the morning but she would have never told me if I hadn't asked! Progeny the Younger seems especially sensitive to it and dramatically gags if I get too close to her face.

On the plane to vacation Progeny the Elder took this unflattering photo of me. I have no chin! Or I have several!

Actually, that is the lymphedema - the swelling in the lymph nodes in my neck that will be chronic. I didn't realized it had "come up" (as the doctor describes it) so much.

I've since started using the compression bandage for an hour or so in the evening when I remember, and doing self-massage more often. The lymph system is less functional and flows less easily, so I have to massage downward from my cheeks to my collarbones to help the lymph flow. Otherwise it backs up and produces the swelling you see.

I mentioned previously that I started running. The warm weather on vacation was a great opportunity to run every day and build up some conditioning.

I started by following a "Couch to 5K" program. They are designed to take a total couch potato from no exercise to running a 5K in eight weeks.

I immediately grew impatient with the amount of walking. I've been athletic for a long time and I'm used to pain from exercise, so I pushed that schedule a bit.

After the first couple of days of run/walk outings I could barely walk. Going down stairs was especially hard. But I kept making the run portions longer and the walk portions smaller and on Day 17 I ran 5K without any walking. It wasn't very fast - roughly a 10 minute mile pace - but I did it.

I kept it up after we returned home, but after a few days I started to feel bad. I have a muscle/tendon tightness in the right rear corner of my head and neck. It feels like a tight guitar string from my shoulder to the top of my head. It gives me a headache. It also seems to give me some swallowing pain. Not the type I had when my throat was raw, but more a muscular pain. Although it seems to be associated with additional throat congestion, too.

I noticed when I first started running that my upper chest felt tight. The area above my collarbones was all in the radiation field so it has damage and scar tissue. I'm pretty sure that's where the tightness came from. My theory is that the guitar string is due to the combination of running and lack of flexibility in my neck. And the other part of my theory is that the throat irritation is due to running in very cold, dry air. It was 26F during my runs.

I'm taking a few days off to see if things improve. And stretching my neck. So far it seems to be improving.

I also had a bout of serious fatigue this past weekend. It felt like the fatigue I experienced during early recovery in the fall. On Saturday I took a two hour nap, then rallied to go to the neighbors' house for a casual dinner (those steak tips!). Sunday I did nothing all day but lay around and watch TV.

Wonderful Wife thinks I have/had a cold but I didn't really have other symptoms. It's true that cold symptoms feel quite different now with my modified pharynx. So could be. Anyway, I feel much better now. People (like my mom) tell me that those unexpected spells of fatigue can occur for years after treatment.

Oh, by the way: we also got a puppy.

Saturday, February 8, 2014

Cranking Up the Engine

OK, time to get off my butt and get back in the shape I was in before I was rudely interrupted.

Over the holidays I went through a period of depression that was on the deep end of the spectrum for me (I'm usually a pretty happy guy). Part of it, I'm sure, was due to lack of exercise. I didn't play sports as a kid, but in my late 20s I got interested in sports like mountain biking and mountain climbing and I've been pretty active ever since. For the past 15 years my main sport has been road cycling. Since 2005 I've commuted to work by bike pretty much whenever the weather permitted.

Actually I misspoke. From 1999-2004 my main sport was mountain climbing and I used cycling as cross training for climbing. Once Progeny the Elder was born I wandered more toward cycling because it was safer and took a lot less time.

When I started thinking about exercising again I thought a lot about running. I've never run for exercise before. Or at least not since I was on the cross country team my freshman year in high school.

Yesterday I bought my first pair of running shoes and went for my first run. The novice running programs recommend that one start by alternating between running and walking - a minute of each at first. Being me, I felt good during that first run segment and went to two minutes, then settled into a 2 minute run, one minute walk pattern.

That probably wasn't a good idea. My legs hurt today. But that didn't stop me from going again today - and this time respecting the 1 minute interval pattern.

Who knows, maybe I'll fall in love with this new sport!

Tuesday, February 4, 2014

When It Rains, It Pours

The In-Laws, who spent more than a month here in the fall taking care of me and mine, were both diagnosed with cancer in the months following their return home.

Mary was diagnosed with a very small breast tumor. Dennis was diagnosed with prostate cancer.

Sheesh! That's a little too much for one family in one year!

Just as we experienced, they had a brief period of terror before settling into the process of treatment planning and now treatment. They are supremely calm individuals and have handled this in their usual way. At least from 3,000 miles away and through the conduit of Wonderful Wife that's how it has seemed.

Mary had a lumpectomy in December and then started four and a half weeks of radiation right after the New Year. She is now finished. With her usual humor, she says that she is feeling some fatigue but that it gives her an excuse to curl up in a blanket. Now she will take an aromatase inhibitor (Letrozole or Arimidex) for five years.

Dennis has had one hormone injection (testosterone suppression, Trelstar) after which they will wait a month to see how the tumor responds. I think the plan then is either more hormone injections (if it is responding well to them) or radiation.

Wonderful Wife is also handling it quite well. Her attitude, like it was with my cancer, is that she won't worry (too much) until someone tells her there is something to be worried about. Interestingly, that's not how she is about anything else in life! :) Anything less serious than cancer she can worry about better than anyone!

We would normally see the In-Laws during our February visit to the west, but due to treatment they are unlikely to be at their winter home. We'll see them this summer, but we'll miss them until then.

[I started this blog with anonymity in mind, but I started to find the blacked out faces humorous and now I consider the anonymity sort of a running joke. Dennis and Mary gave me permission to post this news, and also told me they do not require anonymity. Thus the real names.]

Monday, February 3, 2014

All Quiet on the Oropharyngeal Front

I had my periodic surveillance visit to Dana-Farber today. As you may recall I will see a doctor there every two months for the first two years following treatment, to make a visual inspection of my throat and make sure the cancer is not recurring.

I trade off doctors every visit, so today's visit was with Doctor Rad. We really like both of my oncologists but Doctor Rad is the warmer of the two. I sometimes envision socializing with her - inviting her family to a barbecue at our house or something. One spends so much time with one's doctors during treatment - and such vulnerable time - that they feel like family by the time you're finished.

If there can be a cool thing about cancer, the cool thing about tongue cancer is that to look for recurrence doctors can just use their eyes directly. They don't have to interpret images made by a computer after some system has shot energy beams through tissue and bone. It's direct and instant and less error prone.

To look at my tumor site they spray an anesthetic mist into my nostrils and then insert a thin, flexible scope in my nose and feed it down into my throat. Normally the scope doesn't hurt at all; it's just slightly uncomfortable. At the December visit my nasal passages were inflamed and swollen a little and it hurt more, but today was normal and almost painless.

The photo above shows me with the scope in my throat.

This photo shows what the doctor sees.

To orient you, you are looking down my throat from the back of my mouth. The bottom of the photo is the base of my tongue. The bright inverted arch is my epiglottis and at the end of the tunnel you can see my vocal cords. During this image I am saying "eeeeeee", which makes the throat open and round so you can see well. It also happens to stretch the vocal cords tight.

The scope is a little off center but you can see the groove on the "floor" that runs down the middle of my tongue. It didn't occur to us to take photos during my initial consultation at Dana-Farber on June 4. At that time the groove appeared much deeper because the tumor consisted of tongue tissue that was much puffier and "higher" on both sides of the groove. So high that it was half blocking my throat.

Now my tongue looks normal. Officially I am classified as "No Evidence of Disease" ("NED").

That's a good thing.

On Friday it will be six months since the end of treatment.

Friday, January 24, 2014

Dianne Mardon, R.I.P.

On Tuesday, January 21 my friend Dianne Mardon succumbed to cancer.

My family lived in five different houses, most in the same neighborhood, before I was seven years old. Then my parents had a house built, also in the same neighborhood and in which I lived until adulthood and they lived until after they were both retired.

Soon after we moved to that house, I befriended Sean Mardon. He lived a few houses away. He was my best friend from about age 8 until about age 16, and we remained friends until my mid-20s when we wandered apart.

In 2006 I received word that he had died. I went to his funeral and spoke about some of our many adventures (and wept while doing so).

Having Sean back in my mind also brought back memories of his mother, Dianne. I spent many, many hours and days, and even nights, at their house. Dianne was a single mother with three kids. Although I was oblivious at the time I think she sometimes struggled financially. But she would never hesitate to let me stay for dinner when Sean asked. The Mardon home was my second home, and Dianne was my second mother.

Immediately after Sean's death I tracked down Dianne's address and wrote her a letter telling her how fondly I remembered her. That letter was the beginning of a new friendship.

Dianne had health issues and she needed help disposing of some of Sean's estate. In particular, he had several vehicles that needed to be moved from his former home. I recruited some other common friends and we retrieved the vehicles and I managed the sale of them for Dianne.

After that we started seeing each other regularly. Every few months we would have lunch together. Usually I would bring lunch to her apartment because her health issues limited her mobility. We would have great conversations about books and films. Dianne was a dyed-in-the-wool 60's liberal who worked in politics when she was younger. She had a wry sense of humor, and we would especially enjoy discussing the political stories of the day, both local and national, and poking fun at the principal actors.

In 2009, I moved 3,000 miles across the country but Dianne and I remained in touch. When I returned to Seattle for visits we would get together if we could. Unfortunately it never worked out for her to meet Wonderful Wife and The Progeny.

Dianne was very concerned and supportive during the cancer adventure chronicled in this blog. She sent me notes of care and encouragement. I called her a couple of times during the experience and we would apply our usual humor to the situation.

In early December I learned that Dianne had been diagnosed with advanced lung cancer, metastatic I think. I called her as soon as I learned of it. She wasn't explicit, but I understood it to be terminal. True to form, Dianne faced the situation with a sardonic laugh.

I meant to call Dianne regularly. I even put it on my calendar. I regret that I didn't heed those reminders and call her more often this past month.

Last week Dianne's daughter messaged me to tell me Dianne was very ill. I called right away. Dianne wasn't able to speak, but I was able to tell her I was thinking of her and that I hoped they were at least able to make her comfortable. I am very grateful that Catherine gave me the opportunity to say goodbye.

Rest in peace, Dianne.

Wednesday, January 15, 2014


Recently a fellow tongue cancer patient from Norway came across my blog and started an email correspondence with me. Last week he wrote to wish me a Happy New Year and remarked that I had not written anything about New Year's resolutions so all must be as I wish it to be.

Well, not quite.

I actually do have some New Year's resolutions. I haven't actually followed through on them yet. They were to start doing the post-treatment home activities that I am supposed to be doing:

  • Do self-massage of my neck to relieve lymphedema
  • Use my fluoride trays to protect my teeth from decay
  • Do swallowing exercises

To understand my resistance we have to go back to the beginning of the story.

Obviously when I was first diagnosed we were very afraid. But as I learned more and realized that I was probably in a lucky group with a relatively very positive prognosis, I came to view my cancer as a something like a flu that happened to have a very crappy treatment.

[When I said that to my friend Connie, her response was, "It's interesting that we live in an age where we can think of cancer like the flu." Indeed!]

So now fast forward to the recovery period when the doctors told me I had homework to do for the rest if my life.

What? No!

I got over the flu and should now be able to just go on with my life as normal!

Actually, I did go to specialized physical therapy for the lymphedema in December. It was interesting. It involved massage that is so light it's hard to even call it massage. It was quite pleasant: I would lay on a table and the therapist would gently stroke my jaw and neck for half an hour. She also gave me an ace bandage that goes around my head (like bandages on people with toothaches in old cartoons) that applies compression to the area under my jaw and helps push out lymphatic fluid.

It turns out that the lymphedema is not dangerous. Some people find it bothersome. Most of the therapist's patients are breast cancer patients who get lymphedema much worse than mine, in their arms. For them the treatment is more necessary because their lymphedema causes them a lot more discomfort.

So, the consequences of not following through on that one are not serious. Although I did notice a difference after a few therapy visits. Maybe I can teach The Progeny to stroke Dad's neck!

The other two, swallowing exercises and fluoride trays, are not very difficult. Each would take me just a few minutes a day. Maybe just writing about them here will shame me into doing them.

I mentioned my new email friend from Norway. He had treatment similar to mine three years ago, but his cancer recurred last year. From what I understand his prognosis is quite poor. I have also recently come into contact with a younger man with advanced esophageal cancer who was just diagnosed at the beginning of January and also apparently has a poor prognosis (his wife has begun a blog). Both of these contacts have given me pause. They have made me think about my confidence in my "cure", for two reasons:

  1. I want to be sensitive to those whose outlook is not as good as I believe mine to be.
  2. I could also experience recurrence, which I'm pretty sure Wonderful Wife and I would find shattering.

I am appreciating my apparent good fortune every day. In that context, those daily tasks are pretty tiny.

Tuesday, January 14, 2014

Recovery Status

Slowly but surely, recovery from treatment continues.

Yesterday I wrote a little about my energy level. It improves all the time, but I still have periods of feeling quite fatigued. At the end of a work day I'm pretty tired, and weekends are still usually pretty low energy affairs.

From a scientific point of view I'm fascinated by the fatigue. Physiologically, what the heck can be causing bouts of pronounced tiredness five months after treatment?

I think I've mentioned before that one answer to the fatigue issue is probably to start exercising again. Pre-cancer I was in pretty good shape from riding my bike 11 miles each way to and from work most days. These days the main exercise I get is walking. I've never been a runner but I've been thinking of taking it up since it is so convenient - just put on your shoes and head out the door.

I've been sleeping like a baby. I hardly ever get out of bed in the night lately. I wake up occasionally but am able to go back to sleep. I mentioned a couple of weeks ago that my favorite Christmas present was an electric blanket. I started sleeping better as soon as we put it on the bed. The warmth is comforting. It is a real treat to sleep well again after so many months of fitful and interrupted sleep.

Over the holiday break I had several nights where I got 10 hours of sleep. I think I made some headway on catching up.

I've noticed lately that I am adjusting to and compensating for the hearing loss. I really only notice it now when I am trying to listen to a single person in a room full of talking people or a room with moderate to loud music or TV. When I first returned to work I had a hard time hearing people in my office but I seem to have figured that out. I still have tinnitus but it has never really bothered me (some tinnitus sufferers are quite bothered by it).

My biggest remaining challenges are related to food. I still have greatly diminished taste and saliva.

While the saliva situation hasn't changed at all, I think I might be experiencing a slight improvement in taste.

Last week I had lunch at Wagamama, an Asian restaurant. I ordered a vegetarian ramen - a noodle soup. The broth was very-well seasoned and I think pretty salty. It was the first thing I've eaten that seemed to have a complex flavor, and the flavor lasted throughout the meal. Many things I eat I can only taste for the first bite or two and then it is flavorless after that.

This weekend I ate part of a blueberry muffin. It also held it's flavor longer than usual, and the sugar crystals on the top actually tasted kind of sweet. I liked it enough that I actually snacked on it at home. I never snack these days because no food is pleasant enough to eat "casually".

I bought Progeny the Elder a bar of Lindt white chocolate for her Christmas stocking. I tried a piece of it and it both tasted a little bit good and had a texture that was a little pleasant. Inexpensive chocolate like Hershey or Nestle hasn't been very enjoyable - I get hardly any flavor and the texture is chalky. I guess I need expensive chocolate!

I don't eat very much meat because it requires more saliva. I have to chew my food for a long time so that I can add liquid and make a slurry that is wet enough to swallow. With most meat, that's hard to do. With any food, I have to be careful not to end up with so much food in my mouth that I can't swallow it.

But speaking of meat, one other food that I've discovered is good is a burrito bowl (no tortilla) at Chipotle. I get it with the barbacoa, a shredded beef with a sauce that is pretty wet. I get the bowl with both sour cream and guacamole and the combination is wet and slippery enough for me to actually enjoy. Today at lunch I ate almost the whole thing, which is quite a feat for me. And the beans and meat are more protein that I usually get.

I stopped tracking my calories a long time ago but I weigh myself every morning to make sure I don't lose more weight. I've been within a pound of 155 for quite a while so I'm doing alright.

I still have a little bit of excess mucous in my upper throat. I wake up with a clump of it there and it can still take some time to clear it in the morning. But it has improved steadily and is much, much better than it was. Even after I clear it I still always have a bit of mucous in my throat. It makes my voice sound a little froggy most of the time. I also still cough and sneeze more than usual, but those are both also very much improved. For a long time I had to sneeze through my mouth because sneezing though my nose caused expansion of all the nasal spaces and it was quite painful. Now I can sneeze through my nose with only a small amount of discomfort.

One other weird after effect I have is occasional tingling in my legs. I seem to notice it most frequently at the end of my mile-long walk from the office to the train station. I'll get two or three mild electric jolts from my waist down both my legs to my feet. It's not bothersome, just weird.

So overall, with the exception of the food issues, life continues to get more and more normal.

Monday, January 13, 2014

Five Days a Week

This past week represented two fives: it's been five months since treatment ended, and it was the first week in which I went to the office on all five days.

Fortunately the unpleasantness of treatment continues to recede in my memory. If I try, I can remember feeling badly. But those memories are not spontaneous.

In the next post I'll update my current situation, which overall is pretty good.

Before the end-of-year break I was feeling very aimless at work. Even when I had goals, I had a terrible time trying to concentrate and make progress on them. During the two weeks I had off I felt pretty depressed about work. I was not looking forward to going back and feeling more of that aimlessness.

Fortunately, on the second day back I had a meeting in which I took on a couple of tasks that I could accomplish in a few days. I knocked a couple of them off right away and suddenly felt much better. I still have trouble focusing, but it's improved.

My work (software development) is highly conceptual. One of the things I've always been good at is building a complete high level picture of a system in my head and then being able to solve smaller problems within that system - and to zero in on the issues that need to be solved at the moment. I was involved in some other meetings last week in which I got to exercise those mental muscles. It felt good. It was especially nice just to feel useful.

Although I went to the office all five days, I left early every day. I know that I have a limited energy budget and I have to pace myself.

Just to add to the challenge, I volunteered a couple of evenings. I have been a mentor for the local high school robotics team for the past four years. The main period during which I volunteer is the "build season" in January and February during which the team has six weeks to design a build a robot for that season's game. These are the weeks when mentors are most needed, so I have committed to be there from 6-8 two nights a week.

I felt pretty good all week, but come the weekend I was toast. Saturday afternoon and most of Sunday I was glued to the sofa. Fortunately I no longer get skin-crawlingly tired like back in October, but I get tired enough I don't feel like moving. And I sigh a lot.

The weekend was far too short. This week I've got reason to be at the office Monday through Thursday but I'll work at home on Friday.