Drowning in down

I’m having a very down day today. I have a mountain of things to do: meetings in Boston to prepare for tomorrow, items to prepare and schedule for Monday’s Mediathon, the pre-event PR that needs to be done, the never-ending paperwork that goes with being a non-profit–and never mind the housework, yard work, and shopping required to avoid an appearance on Hoarders. I don’t have time to get down in the dumps, but I’m there anyway.

People are hurting and people are dying…

Part of it is yesterday’s election. I want to believe that cancer research is a non-partisan issue. But I know that budget cuts will mean cuts to carcinoid/NETs research. Still, the election is small cheese compared with what is really bothering me.

Carcinoid down

I spend part of every day listening to carcinoid/NETs patients. I read their posts in five different support groups. I read their blogs and Facebook pages. I go to patient conferences. Many of those folks have become friends–a term I do not use lightly.

I want to believe that cancer research is a non-partisan issue.

Their struggles and frustrations, individually and collectively, have become an important piece of my life. I rejoice with them when they get good news. I become frustrated when they get frustrated with their insurance companies, their doctors and the restricted lives they endure. And I grieve with them when their doctors tell them there is nothing more they can do.

How down am I?

I don’t comment much in the support groups. Most of the time, there is little I can say or do that will make a difference–nothing I can say that will not come off as an empty and clichéd platitude. I leave the medical advice to the medical community. I now know enough about the disease to know there is way too much I don’t understand about it for me to be giving advice beyond the advice people already get and give: find a specialist, get to Iowa or New Orleans or New York or Boston or…

I rejoice with them…and I grieve with them…

Instead, I read the research and try to figure out how to put it in terms regular people will understand. Instead, I try to organize groups and events to spread the word to the general population about carcinoid/NETs and try to find new sources of money for research. I want to save lives because I know just how bleak things are for those who are left behind. You know you are in trouble when you want the furnace to come on, not because you want heat, but because the sound will break the silence of an otherwise empty house. You know you are in trouble when you look forward to the refrigerator coming on for the same reason.

Frustration brings me down

Yesterday, I forced myself to go out to be with people. I’m fine while I am there. Listening to others talk, seeing others with the ones they love, having a conversation about politics or sports or housekeeping or whatever is not a problem. Coming home is. I constantly weigh that price against the benefit of social interaction. Some days, the price is just too high.

I want to save lives because I know just how bleak things are…

And I’m frustrated. More than four years have passed since Jane was diagnosed. More than 48,000 people have died of carcinoid/NETs in that time. More than 48,000 new cases have been diagnosed in that time. And while we have made significant progress against the disease over that time, those numbers have not really changed much since Jane’s diagnosis, since her death, since I started working to put Walking with Jane together.

Success and failure

Others see what I have done in that time and see success. I look at it and see what I have failed to do. We’ll generate close to $100,000 for research and awareness and scholarships this year. That sounds like a lot–and it is. But my goal was for Walking with Jane to have generated $250,000 this year. My goal was that NET cancer research would have $20 million to work with this year. Instead, it will have $7-10 million.

Some days, the price is just too high.

The lowliest candidate running for a judgeship in some backwater county raised more money than Walking with Jane did this year. As a nation, we just spent over $4 billion electing people to represent us in Washington, DC. People who “don’t believe” in evolution or global warming had no difficulty raising boatloads of money for ads whose main theme seemed to be “more of the same” and “not one of us.” What the “rare cancers” could have done with that $4 billion makes me weep.

Getting up from down

I am not giving up. I’ll keep pushing every button I can find, sending letters and ringing door bells and making posts for Facebook and any other place I can think of.

I…see what I have failed to do.

But today, I won’t pretend to be upbeat. People are hurting and people are dying from this cancer. I feel what they feel–as does anyone with a heart or a brain.