Month 45 ends

Jane and I met Jen Chan, her oncologist at the Dana-Farber cancer Institute, for the first time four years ago yesterday. Today, 45 months after Jane’s death, Jen and I were on the radio with Matt Kulke, the director of the Program in Neuroendocrine and Carcinoid Tumors at DFCI to talk about carcinoid/NETs and Walking with Jane.

Every step counts.

After the broadcast, I wrote a couple of quick thank you notes, talked to the doctor’s office about my cranky right knee, then drove to the cemetery as I do on the tenth of each month to spend a little time at Jane’s grave. Every visit there leaves me feeling empty and a bit depressed but today was not as difficult as our 25th anniversary was eight days ago.

Every month has memories

My mood was buoyed by the good news on my knee–there is nothing seriously wrong with it beyond a bit of swelling, it turns out–and by the hour-long session on Sirius XM’s DoctorRadio broadcast. The doctors were great, and I managed to muddle through without making it clear I’m an idiot. It didn’t hurt that I was so depressed on September 2 I didn’t want to get out of bed. By comparison, any day other than the day she died or the day we buried her felt good.

Every visit there leaves me feeling empty…

That is not to say today has been easy. It has just been easy in comparison to some other days I’ve had lately. The months of August through December are filled with memory mine-fields of the halls at Dana-Farber and Brigham & Women’s Hospital, of going off to work alone every morning and coming home to an increasingly crippled wife every night, and of pretending everything was going to be OK when it clearly was not.

The tenth of the month

They tell me eventually I will be able to focus on the good times we had before the cancer took over our lives–that those last months will begin to fade enough to let those better memories through. There are–even now–moments when I can see our wedding day again, recall a trip to a museum or play, relive a hike or a climb. But the tenth of every month takes me back to her bedside on that last day–and to that last breath.

…August through December are filled with memory mine-fields…

August this year was particularly cruel. In addition to dealing with memories of our last trip together, the biopsy, and the diagnosis, I lost my father to a stroke and a niece to a drug overdose. I also have a cousin who finished her last round of chemo for her cancer last month for a particularly nasty form of the disease. There are days I feel stuck together by the low-tack tape that painters use to mask things off.

A month to think about mortality

The knee injury last Thursday was small cheese by comparison. But when the doctor says he thinks you may be down to bone-on-bone in your knee–essentially meaning that everything you like to do may be vanishing in a single step–it makes you think about your own mortality in a very non-theoretical way.

August this year was particularly cruel.

I am worried about what is going on in the carcinoid/NETs world. I want to think things are very different from they were four years ago. I want to think that Jane’s death and my efforts since have made a substantial difference in where we are. It let’s me sleep at night.

The month ahead

But while we have the Program at DFCI and some new drugs and radiation treatments undergoing trials, while we’ve made some strides in dealing with liver metastases, and made some small steps toward raising awareness, we still have substantial money problems. Money pays for lab space and researchers. You can’t pay for those things in promises and prayers. Without better resources than we have, no cure is going to be forthcoming.

I am worried about what is going on in the carcinoid/NETs world.

This year, our Boston Marathon Jimmy Fund Walk team will finally ellipse what we raised the year I joined it. That we’ve had to absorb another very successful team to do so means only that we will have equalled what the two teams raised last year–and only if we raise about $15,000 in the next 11 days.

Planning the future

Elsewhere, I am hearing about programs getting smaller, not expanding. We aren’t expanding the size of the pie fast enough. Nor am I certain what expansion we have seen is sustainable.

Money pays for lab space and researchers.

So we all need to sit down and do some thinking and some planning. While the news on my knee is good, I still have to stay off it for a few days. Tomorrow, I will start crafting a plan for the next steps in the process of taking down this disease. If I am lucky, some people will listen, add ideas of their own, and–most importantly–help put that plan into action.

We have a long way to go to defeat this disease. Every step counts.