Exciting things are happening all around me lately: the launch of the Program in Neuroendocrine and Carcinoid Tumors and its website at Dana-Farber, the significant growth in the number of teams, participants and fundraising for our local Relay for Life, the success of various fundraising programs, news of new drugs and techniques for the cure of other cancers, the list of discoveries about NET and CS at Dana-Farber and elsewhere…

A few weeks ago, a friend observed that I don’t seem to get outwardly excited about much–even when it seems like I should.

Once, before Jane got sick, I would get excited about things–especially positive things that were going on around me. But the weekly–sometimes daily–sometimes hourly–shifts in prognosis and health during the last four months of her life have made me very reluctant about getting too enthusiastic or too depressed about any single moment or event. That piece of me is so thoroughly traumatized and desensitized that I sometimes feel like a block of un-carved wood.

We were both easily excited and discouraged in the early days of her illness. Cancer that has spread to the liver has no cure, we read. We both started thinking in terms of months. The cancer was rare, but slow-growing, we were told. We had permission to think in years. There was a trial we might qualify for. But then Jane’s tumors were too advanced to qualify. There was a potential heart issue. But we could fix that with an operation. But the valves were more damaged than they first appeared–and that was just part of what we went through in the first month after the diagnosis.

We were thrilled when her appetite returned after her first injection–just as we had been thrilled the day after she got the first medication for the swelling in her legs and found the stairs effortless again. Neither effect lasted more than 48 hours.

The days in the hospital spun us around sometimes hourly–and on December 9, we went from planning what we would do when she got out of rehab to me trying to wrap my mind around her impending death within what seemed like minutes.

Now it does not matter how good or bad the news is–my response is perpetually tempered by the expectation that everything could change before I have even had time to adjust.

I don’t know what that makes me. I don’t know if it makes me a more effective advocate or a less effective one. I don’t know whether that makes me a better or worse human being. I only know that it is who and what I have become.

I will get excited again some day, I think. Sometimes I allow myself the daydream of the day we put this cancer to rest–the day we unravel enough of its mystery that it is as vulnerable as it left Jane at the end.

I tear up at the thought.

But I know we are not there yet–and that it is not yet time to celebrate.