Posted by & filed under Meta, Personal, Philosophy.

My extensive writing on my CaringBridge site began with an attempt to document my health status. Then it became a tool for helping me understand the massive and entirely positive transformation in my outlook on life since my diagnosis with grade-4 GBMO brain cancer. Then as I started to get used to my new perspective, continuing to write was inspired tremendously by a desire to help people — especially the people in the world I love the most: my family.

I’ve been surprised to learn that I don’t fear death for my own sake. (Debilitation might well be much worse for everyone, including myself.) But when it comes to dying, when my time comes — which I hope and expect will be many decades from now — I feel it will be just like the time before I was born. Not dark, not scary, just nothing at all. Something like this Youtube video featuring Alan Watts sharing his philosophical take on life and death, set to a haunting and beautiful animated short film.

But when I have had moments of fear (which thankfully were mostly just in the handful of days between the surgery and the pathology report) it has been for the sake of my family. The idea of being unable to provide or care for them, of leaving Shawna to fend for herself and of not being there for Abi and Harper, is incredibly painful to consider. And so when I realized I had all this gratitude and happiness and heightened perception of beauty, I began documenting as much of it as I could, not just to understand it better, but also increasingly to be a resource for them in the future, whether I’m here and healthy or not. To show them concretely, “This is who your father was”, and to set an example, i.e. “When the shit hits the fan, this is how to handle it. This is how to be accepting of whatever happens. Everything will be ok.” [That is not to say that I’ve allowed any kind of dishonesty into my writing in an attempt to sugarcoat things. I’ve been completely transparent. The degree to which I’ve changed as a person in the last month would make doing anything else impossible for me.]

Also, I realized that even in the likely event I ultimately defeat this thing, perhaps as teens or young adults my beloved daughters will be in a state of not wanting to accept help or support from me. In that case, maybe they’ll still end up reading some of this and perhaps gain some insights or encouragement from it. That’s my hope and intent. To the degree that sharing my thoughts and perspective so openly might be helpful to anyone else [apparently it has been, so far, for some], that has been an unexpected but very gratifying side effect. I can’t think of anything more important in life than helping other people be happy. [To that end, I issue fair warning that I may be annoyingly zealous in my newfound enthusiasm for healthy eating and meditation, both of which have been of tremendous benefit to me.] In any event, I plan to continue writing like this for as long as the muse is with me.

Finally, thank you for reading this, and for being a part of my life. Being deeply and personally connected to so many phenomenal people remains a wellspring of happiness for me. 🙂

Sincerely, with so much love and gratitude,

Posted by & filed under Meta, Personal.

This is my new blog, as of December 2012. I’ve been writing at some length on CaringBridge about my battle with brain cancer, but that’s not the right forum for many of the things I want to write about, which have nothing to do with my health status. Hence, this blog.

Lots more to come, but for today, simply: welcome.
And thank you for visiting!

Warm Regards,

P.S. I’ve resisted any urges to care about the technical underpinnings of this blog, at least for now. It’s a dead-simple wordpress site hosted on WPEngine, with a simple default theme I’ve spent 0 minutes customizing. For now it’s all about getting started publishing these thoughts. Improved aesthetics and technical elegance may come later, or never. 🙂

Posted by & filed under Personal, Philosophy.

The man with no shoes

Hi everyone,
Thank you so much for all the positive thoughts, and for the compliments about my writing. (You do realize my recent problems all started because of my head swelling, right? /jk)
I am so glad that my sharing here might be helpful to others. For me, it has been a hugely cathartic and therapeutic process to keep writing about this experience. I’ve worried a little bit about becoming too self-absorbed, since it’s so focused on myself. Hearing that other people are benefiting from it helps alleviate that worry. Thank you.
I usually don’t really know or properly understand my own thoughts and feelings until I write them down.
The process doesn’t just document the state of my mind and heart, it is how I formulate and clarify and make real my ideas and feelings.
I’m so grateful for the positive feedback, it is incredibly gratifying to find that simply by being myself and sharing how I feel, other people are being helped. That is so awesome! I know from experience that a little encouragement or dose of positive energy can go a long way when the going is tough. For example, Chuck “chuckstrong” Pagano’s amazing speech about vision and circumstance pretty much got me through the first week or two after I first heard the word “tumor” in regards to my headaches. If I can somehow be that kind of help to other people, it would make me very happy.

Ok, on to the status update from our visit to MGH:

Today Shawna and I met with Norine Leahy (a nurse practitioner) for the first time, and also got almost a full hour alone with Dr Dietrich (my neuro oncologist), which was great.

We learned a lot, and came away more optimistic than ever. We learned that some of the details of our understanding about recurrence and radiation limits were not quite right. Happily, it seems my prognosis might be slightly less bleak than my post yesterday indicated.

Some specifics:

* My age (extreme youth, from an oncologist’s perspective) is a HUGE factor in the likelihood that this initial treatment will succeed in eradicating what’s left of the cancer in my brain.

* Recurrence is not necessarily as much cause for extreme dread as it first seemed; recurrence often takes the form of small non-malignant growths that can pretty easily be removed with highly-focused radiation. The huge tumor I had grew there for at least a year, so it’s not like a recurrence would suddenly introduce another fist-sized mass.

* Lifetime limits on total radiation dosage are not absolute, so the best treatment options (the global consensus “standard of care” for GBMO, consisting of resection when feasible, then Temodar chemo + radiation) should all still be on the table if/when I’m faced with round 2 in the future, as long as a decent amount of time passes before a recurrence. Also, the super-focused radiation to target any specific little growths is always safely available.

* Some GBMO patients have gone as long as 9 years between initial diagnosis and recurrence.

* Dr Dietrich acknowledged there’s no cure, but then used the phrase “manageable disease” to describe my GBMO. That was music to my ears. With my awesome support team and doctors and determination not to let this thing beat me, I’m confident we can manage the hell out of it until it is curable.

Also, when it comes to terms like “incurable”, I have a lot to say. It was only a couple years ago that HIV was a guaranteed death sentence. Now, life expectancy for new cases is nearly the same as the general population. Things change quickly in cutting-edge medicine, and the advances in science’s understanding of cancer (e.g. the relative importance of genetic mutations) are moving so fast, that buying just a few years’ time between this treatment and a recurrence could easily make a huge difference in my long-term outlook. So instead of calling brain cancer “incurable” (which connotes a certain finality), I prefer to say it’s simply not *yet* been cured. I expect that to change, and to benefit when it does.

* Diet:
We learned that foods with highly concentrated sugar are basically poison for me, as they directly feed the cancer cells. Carbs are ok, but sweets are not. So, no more cookies or brownies or ice cream. Fortunately, while I’ve always enjoyed those things, I don’t have a huge sweet tooth. So this won’t be too hard for me. (I’m so grateful red wine and bread are still ok!!!)

* Metalhead:
Somehow I didn’t realize till today that I now have a titanium plate and screws in my head. I know my great friend JJ is jealous.

* Clinical Trials:
Massive thanks to Shawna and David for their tireless research, in compiling an exhaustive list of literally every single GBMO trial in the country for which I might be eligible. Seriously, you two are incredible. Nobody else has a wife or a brother like you. Following the wisdom of Dr Oh and Dr Dietrich, I won’t consider anything that *replaces* the standard of care, because there’s too much solid data showing its effectiveness, but trials that involve *adding* something potentially helpful to the mix are definitely worth considering. One problem with trials is that you can always randomly be put in the control group (e.g. get a placebo instead of the experimental medicine)… and in general they’re not likely to make a big difference. But, they do show where the research is going. Dr. Dietrich had a clever idea when he noticed that for one particular trial that looked worthwhile, the drug they’re adding to the standard of care is  actually FDA-approved and available, with limited or beneficial side effects, and he could legitimately justify prescribing it to me on other grounds. If we decide to do that, it’d be like participating in the trial, but with guaranteed assignment to the test group that gets the drug. Pretty cool.

* Other medical detail:
This is probably way TMI, but FYI the catheter used during my surgery damaged my urethra. Ironically, I’ve actually had more pain and discomfort from that than from anything to do with the operation itself. But today, I finally got prescribed the right medication to help counteract symptoms in that area, and it seems to be working. Phew! Relief.
But it is insane for me to complain at all, about anything, right now. Here’s why:

Today I got a call from an old friend (I’ll call him ‘Tim’ to protect his privacy), and was sad to learn he’s been having marriage troubles. He told me he had been confiding in a mutual friend about his situation, when that friend said “wait, let me show you something” and showed him my journal entry from yesterday. Tim then mentioned a story about a barefoot traveller on a long journey who complains continually about having no shoes… until he meets a man with no feet. In Tim’s case, he felt like the man with no shoes after reading about my condition. But after today’s horrifying tragedy in Newtown, I feel like I’m the barefoot complainer.

When I learned about Newtown, it upset me so much I had to run to the bathroom, and was almost physically sick over it. It’s got to be  the worst thing I’ve ever heard. I normally think hasty legislation in response to news events is a mistake leading to bad public policy, but all that rational thinking goes out the window now. This is too much. Something is just deeply, deeply wrong with this country when it comes to guns (and health care for the mentally ill), and it has to change. I’m so torn up about it, for those parents… it’s unimaginable.

In comparison, this evening, Shawna and I took the girls to Heritage Plantation (a beautiful set of museums and gardens in Sandwich on the Cape) for their “Festival of Lights”. We all bundled up in hats and gloves, walked around holding hands and looking at pretty Christmas lights, and got to look at antique cars, chat with Santa, ride an old-fashioned carousel, roast marshmallows over an open fire, sip hot chocolate (mulled cider for me) and watch the girls skip and run while they waved little glowstick toys I bought them. It was just perfect, a slice of heaven (so to speak). Thinking about those parents in CT, it was almost too much to take, how unfair it was that Shawna and I could spend this kind of idyllic family time with our gorgeous, happy, curious, brilliant, creative little girls. My heart just overflows with this massive, massive love for my family. Words fail me. I’m so lucky it’s ridiculous.

When I say I have a lot to be grateful for, I sure mean it.

Thanks as always for your love and support.

Much Love,


Originally posted on – 2012-12-15 1:58am

Posted by & filed under Personal, Philosophy.

The Farmer’s Luck

This is an ancient Taoist story I’ve been reflecting on a lot lately.
It is one of my all-time favorite parables, about how people are often too hasty in labeling things lucky or unlucky, when in fact we don’t know how things will turn out.

A farmer in a small village was considered wealthy, because he owned a horse which he could use for ploughing and transportation. One day his horse ran away.

All his neighbours exclaimed how terrible this was, and would say, “What bad luck.”

The farmer simply replied, “maybe”.

A few days later the horse returned, bringing two wild horses with it.

The neighbours all rejoiced at his good fortune and said, “What great luck!”

Again, the farmer’s reply was, “maybe.”

The next day, the farmer’s only son tried to ride one of the wild horses.

The horse threw him and the son broke his leg.

The neighbours all offered their sympathy for his misfortune and would again say, “Such terrible luck!”

The farmer continued to reply with, “maybe.”

The next week, a war-mongering general sent conscription officers to the village to enlist all able-bodied young men into the army. They rejected the farmer’s son because of his broken leg.

The neighbours said, “Wow, you are the luckiest man in the village!”

The farmer still replied with “maybe.”

Lately, I feel like the farmer. I think people are assuming my diagnosis is very unlucky. But, though I really wish I could avoid worrying my loved ones, I don’t *feel* unlucky. Quite the opposite. Every day since my surgery, I’ve been waking up with my heart absolutely full of gratitude and overwhelming appreciation for being alive and for all the love in my life. It is an amazing, fantastic feeling that I wish everyone could experience, to be so conscious of each breath and each moment. It’s a gift, really. I feel more alive than I ever have before, and it is awesome. It’s been a very surprising silver lining, to say the least.

I spent several different periods of my life living with unhappiness caused by aspects of my life being out of harmony or balance. I can’t imagine letting that happen again now.

One of the characteristics of this kind of cancer is that (unlike, say, breast cancer) it won’t ever reach a point where the doctors will say “Ok, now that you’ve gone X months or years without any recurrence, it won’t come back”. I will always be in this fight. At first that seems unlucky. But part of me is glad about it, because it means I won’t get complacent. I will stay in this conscious, mindful, grateful state, and that is exactly how I want to live.

Don’t get me wrong; if there were a simple cure, of course I would take it. But given I don’t have any control over my diagnosis or prognosis, I am embracing everything I can about my condition and my new normal, and it turns out there is just a huge amount to be glad about.

Thank you for all your love and support. Shawna and I are so lucky to have all you awesome people in our corner.


Note: Originally posted on – Dec 12, 2012 6:55am