Life Expectancy

The other day Progeny the Elder asked me, out of the blue, "Dad, how old were your parents when their parents died?"

"Well, my dad was about 35 and 43 when his parents died and my mom was about 45 and 49 when her parents died."

Silence for a minute.

"How old will I be when you die?"

"I'm not sure. A lot older than you are now."

"Will the cancer you had affect when you die?"

"Hmm. I'm not sure but I don't think so."

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When looking for an image to go with this post I came across this life expectancy calculator. It said I'm going to live to the age of 87.23 years. That means I'll die at exactly 8:48pm on August 16, 2047.

Progeny the Elder will be 43.

PBS: The Emperor of All Maladies

Back in July, 2013 when I was in the middle of treatment, I wrote about "The Emperor of All Maladies" by Siddhartha Mukherjee, MD. I read the book before I was diagnosed, on the advice of a friend, and loved it. Go back and read what I wrote about it previously.

Wonderful Wife informed me today that the book has been made into a PBS documentary series produced by Ken Burns. It is a 6-hour program that will apparently air on PBS over three nights beginning March 30. Check your local listings (or just watch it online).

I'm excited to see how the book translates to documentary film format.

#RememberLisa

At the same time I was starting this blog, I was also learning that "cancer blog" is a thing. Many, many cancer patients write publicly about their experiences.

While I read a few entries on many cancer blogs in the beginning, there were four that I ended up following regularly.

The first was a Norwegian man named Martin who started commenting on my blog. He had a cancer similar to mine, but his recurred 18 months after treatment and his prognosis was poor. He was already starting to lose quality of life when we came in contact. He was a husband and father of teenagers and he tried hard to have as much quality time with his family as possible. His blog was called "Livskvalitet - eller tid? Obs! Ingen rosa cupcakes og lite retusjering.", which apparently translates as "Quality of Life - or time? Note! No pink cupcakes and little retouching." Martin passed away on January 30, 2014.

Next was Lindsey Miller, a young woman in Southern California with a rare liver cancer. Her blog was titled "I am a Liver". Lindsey had a three year battle with a cancer that seemed to be "chronic", i.e. one that she could live with for a long time. But she passed away on May 21, 2014 (my birthday).

Third was a young high school basketball coach and father of very young children from Idaho named Zack Ingersoll. He and his wife Nicole had a newborn when he was diagnosed with advanced esophageal cancer. Nicolle started a blog titled "Cancer: Game On" and relayed many inspiring stories of the incredible support Zack's family received from hundreds of people in and around their Idaho community. I found my way to Nicole's blog by way of a Facebook post by Wonderful Wife's best friend. Zack passed away on January 24, 2015.

The fourth blogger was Lisa Boncheck Adams, who is pictured above. Lisa was probably the world's most famous cancer blogger. She had more than 15,000 Twitter followers and posted more than 176,000 tweets and hundreds of blog posts during her eight year journey with metastatic breast cancer. She gained additional fame when two well-known journalists questioned whether it was appropriate for her to write with such frequency and honesty about her experience. One of them essentially asked, "why can't she die more quietly?"

It was during that kerfuffle that I started following Lisa.

While all of these people affected me and I felt a loss upon each of their deaths, Lisa was the writer I felt most connected to. She was insightful and intimate and poetic and real. (Well, they all were very real!) She frequently reminded us of her mantra:

“Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.”

She tried everything she could to have as much time as possible with her children and husband. She was very prolific until the last few weeks of her life. In the past few weeks I could tell by the decreased pace and the increased brevity that the end was near.

Lisa Boncheck Adams died last night.

I am writing this post while watching a movie with Wonderful Wife and The Progeny. I wanted to enjoy the movie with them but I've been thinking about Lisa since I learned of her death late this morning. While I was researching the links I had the last post from "I am a Liver"on my screen and Progeny the Elder, who was snuggled beside me, saw the photo of Lindsey and asked "Who's that?"

I couldn't speak to answer her question.

The Progeny had another opportunity to see Dad cry.

Fortunately, Wonderful Wife and I have managed to do very well being emotionally honest and open with The Progeny. We try to do that in all of life but we've tried especially hard when it comes to my cancer. Once I could speak again I explained what I was sad about. They gave me sympathetic looks and went on watching their movie.

Perfect.

I told Wonderful Wife each time one of my cancer bloggers passed away. She was following "Cancer: Game On" along with me. Wonderful Wife and I, at each passing, have thanked our lucky stars that my story appears to have a different, happier, ending. Although Lisa hated to be other peoples' "negative reference point" I'm afraid she was one for me and will continue to be.

My cancer bloggers are all gone now. May Martin, Lindsey, Zack and Lisa all rest in peace.

Coincidentally, I had my most recent checkup at the Dana-Farber on Tuesday.

All clear.

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.

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.

Recession

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.

Checkpoint

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.