Sunday, June 24, 2018

Five Years

So, I just passed a little milestone: five years since cancer diagnosis.

I’m an official cancer survival statistic!

There’s nothing magic about five years with my particular cancer. But in order to measure progress overall, the CDC and other organizations track and publish five-year survival rates for all cancer types. You can see them here (on the Survival tab).

It feels both long ago, and like yesterday.

Wonderful Wife and I find that we use it as a life milestone. We’ll be trying to remember when some other event occurred, like having the house painted, and we’ll ask each other, “Was that before or after cancer?”

Long-time readers of this blog may recall that once I learned my cancer was highly survivable, I wanted to treat it like the flu with an unpleasant treatment. I didn’t feel like it would become a significant life event for me.

I was wrong.

I’ve written about scares I’ve had since treatment, where some other symptom or remark by a clinician unleashes an unexpected level of fear. It surprises me that it is right there under the surface.

I’ve always tried to be an empathetic and kind person but I think surviving cancer has helped me become even more so.

Two years ago I went to work in Informatics at Dana-Farber. That continues to be quite an honor. It gives me weekly opportunities to be helpful and kind to patients who are in the thick of it. And my personal experience gives me valuable insight in my work. I am working on projects that should have a direct impact on cancer research and new and improved treatments.

The Progeny both suffer from anxiety. They did to some extent before cancer (it’s disheartening how many adolescents suffer from anxiety today), but cancer definitely stepped it up, especially for Progeny the Younger who is now 12. Both have gone to therapy.

Wonderful Wife has a long history of depression, which fortunately is pretty well managed with medication. But after the heroic effort she put in taking care of me during treatment and recovery, she experienced a deep trough for several months. Luckily, with the help of her doctors, she was able to climb out and has done pretty well since.

The side effects of treatment persist but are just part of life now. I still cough a lot because of diminished and thick saliva that makes my throat "sticky". I think my sense of taste has improved, but it's such a subjective thing that it's not clear whether that is physical change or modified perception. My hearing is still affected, but I only have significant trouble in noisy environments like restaurants and bars where trying to focus on a conversation can be exhausting. Those are constant reminders of cancer, but they have a neutral sense to them - they are what they are.

The fact that I write so seldom here these days is evidence of the recession of cancer and its effects into the background of my life. Life is normal and busy, and even though I have a long list of topics I’d like to write about here writing never seems to rise to the top of the list.

I’m not even sure anyone is still listening here. If you are, please send a note to john at Just say “I’m still here, keep writing!”

Next week I visit Dr. Chemo for my follow-up visit.  Those are now just twice per year.

I’m going to bake brownies and make cards with a family photo, and deliver them to the Head and Neck Clinic, the Infusion Center, and Radiation Oncology. These are the places where I spent most of my time during treatment. The staff sees most people at their worst, and I know they like it when former patients come back healthy and happy and normal.

Happy Five Years to me!

Friday, April 13, 2018

A Strong Thread

Wow, it's been ten months since I've posted here. Way too long. Please leave a comment to let me know if anyone is still here!

I actually have a stack of topics I've collected to write about but I never seem to make it a priority in my time or energy budget.  But here I am. And I'll try to get to those topics soon.

This week my friend and neighbor, a health economics researcher and blogger and Twitter god, wrote about a health issue he is experiencing. Then he wrote about the experience of writing publicly about a personal health issue, including the positive feedback he received, the rapid widening of his knowledge of the topic via input from his circle, and the response from a few people asking if he worried about future ramifications. He also wrote that he found the experience cathartic.

I sent him praise for his openness, and I asked if he was familiar with Brené Brown. It turns out he is quite familiar with her and strives to learn her lessons.

Well, that brought to mind my friend and former coworker Yair (who has consented to being identified here). In the middle of cancer treatment Yair praised me for my honesty and vulnerability on this blog and told me about BrenĂ© Brown, whom I had never heard of. I watched her famous TED talk videos (2010 and 2012). She speaks my language. Through years of therapy and 12-step groups and other work, the most important accomplishment of my life was finally arriving at the sense of worthiness that she describes, accurately, from my experience,  as the core of happiness.

Having that brought to mind by my friend/neighbor's recent writing caused me to go watch those videos again. Powerful stuff.  I highly recommend you invest the 40 minutes to watch them. I want my teenage daughters to watch them.

That, in turn, caused me to go back and reread many posts from this blog. I do that from time to time to remind myself where I've been. I started with Why Am I Here?, the post that prompted Yair's comment, but then moved backward in time into the worst parts of treatment. Yair was mainly praising my willingness to show weakness and fear, like in A Crying Shame and Ultraviolence. That last post, especially its last two sentences, caused me to cry tonight!

The core of Dr. Brown's message is the title of that 2010 TED Talk: "The Value of Vulnerability". Vulnerability is what enables connection, and connection is what we all crave. She says, "it's what we're wired for."

With this post I thank Yair for connecting years ago, and for the thread that runs through a growing connection with my neighbor today.

Go forth and be seen!