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!

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.]

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.

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.

Denial

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.

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.

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.