Living and Dying

Posted 27 April 2016

Venture Beat recently ran a story about me titled, A dying entrepreneur puts his tech business up for sale.

Irene and I both had the same reaction to reading this: it was a little disquieting, though there is nothing inaccurate about it. The issue is how I think about myself; while there have been times that I felt like I was dying, most of the time I don’t.

Semantics

Part of the question is semantic: what does it mean to be dying? In a sense, we are all dying from the day we are born, but this isn’t really a very useful observation. In the medical community, when you go on hospice they consider you as dying; until then, you are are living with a chronic or terminal illness.

One could argue that anyone with an incurable disease is dying, but I’m not sure that’s helpful either. It is a matter of timeframe and probabilities.

Life feels qualitatively different when the doctors tell you to think in terms of months, and not years, of life left. This perspective did trigger in me a radically different frame of mind. At first “dying” is how I would have described it. But in time, with the exception of a couple of bad interludes, I have felt this less and less.

Feelings

Ultimately, I’m not sure the semantic discussion is useful. But whether I feel like I am dying is important.

In the early days after my diagnosis, the feeling that I was dying was strong. Timeframes, when any were mentioned, were a few months. I had constant pain, which was marginally managed by increasing doses of painkillers. I couldn’t imagine going out to dinner, much less taking a vacation.

It was hard for me not to feel, in this state of mind, that things were pretty hopeless. I was wondering if I would see another spring. I was in a “get your affairs in order” mindset.

When I got my second biliary stent installed in December and my pain largely disappeared, it completely changed my outlook. For the first time since diagnosis, it didn’t feel like the future was just a steady downward slide.

Then, when after three chemo cycles I felt considerably more energetic and the CT scan showed shrinkage of the tumors, I was downright giddy.

Unfortunately, the chemo didn’t continue to work. Those first few cycles probably gave me a few more months of life, but there’s no point in continuing.

Now the radiation treatments, recently completed but still doing their work, have provided the next ray of hope — this time, for what may be the final period of remission.

Remission

Remission is the great hope after cancer treatment. Remission is simply a partial or complete reduction of tumor size, number of tumors, and symptoms.

I am presumably in partial remission. After Friday’s CT scan, I’ll know more about the degree.

In terms of symptoms, though, I find it frustrating that they are so masked by the medications that I don’t really know how I would feel unmedicated. I am taking both methadone (an opiod) for pain, and dexamethasone (a steroid) for inflammation. Both have significant withdrawal symptoms unless you taper off of them quite slowly, so I can’t just stop taking them and see how I feel.

I’ve recently started tapering off the methadone, so I can see if the pain comes back or if I don’t need painkillers right now. That will take weeks, and then I plan to do the same thing with the dexamethasone. Right now, I suspect I have at least as many symptoms from medication side-effects as I do from the underlying disease.

Beyond Remission

The hoped-for initial goal after cancer treatment is “no evidence of disease”, which does not mean that you are cured but only that if there is any disease still present, the doctors can’t identify it. I don’t expect to reach this point, though there is always a chance.

In general, if a cancer is going to recur after it has been in complete remission, it will do so within five years, so after five years in remission the word “cured” begins to be cautiously used.

Unfortunately, GI cancers rarely follow this progression; rather, they progress from partial remission to recurrence. At that point, the question is whether there are any new treatments available to treat the recurrence; previously used treatments are generally not effective (in the case of chemo) or safe (for radiation) a second time.

So Am I Dying?

Probably sooner than you, and a lot sooner than I would like. But beyond that, it is all guesswork.

What is most important is that, today, I don’t feel like I am dying. In fact, it seems almost impossible, like a surreal dream, that I am seriously ill. I am truly enjoying life with Irene, my kids, the animals, my garden, and the beauty of Northern California.

The reality of my situation is sobering, of course, when I stop and think about it. But I am focusing as intensely as I can on right now, and right now is good!