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.

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!

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!

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.

Happy

That is what I am these days.

Happy!

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.

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.

Splendid.

Fabulous.

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.

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!