Headbangers and Wheelsqueakers

Today is a down day. C is grateful to have finished this round of irino - a five day, five sortie assault on cancerland. He describes the fatigue as intense - not tired per se, just physically unable to get out of bed. Something I just have to imagine. He mentioned how it's clear these medications are designed to just take you to that edge, finding that fine line between what the tumor can endure and what the patient can endure. It's the situation that makes clear how essential new treatments for these diseases are, to find treatments that are not simply toxic to the cancer survivor.

A friend brought the group Stand Up To Cancer to my attention. They describe their mission this way:

"Inspired to act by our own personal experiences with cancer, we recognize that we can no longer rely on the current system alone to give us the breakthroughs we need. So, we are calling on the public to help take matters into our own hands, investing in a revolution that will change the way scientists and clinicians work to understand and treat these diseases...

"Working with the top experts in cancer research, Stand Up To Cancer is forging a new way to develop breakthroughs that will end cancer. We’re putting together the best and the brightest minds in cancer research – those on the edge of accomplishment – investing in their projects and taking the bureaucratic obstacles out of their way. We are building interdisciplinary “Dream Teams” of scientists, clinicians, technicians and other experts, who will focus on a specific cancer problem. We’ll track their progress in real time, so that everyone who invests can see how their participation is creating real change."

Here's a (short and interesting) video by one of the researchers they are supporting, talking about her work on Ewing's sarcoma, a disease that is closely related to rhabdomyosarcoma in it's need for treatment that is unique from other sarcomas.



With C recovering today from these current technologies, the value of work like this is vividly clear.

Tomorrow we go see another oncologist, a sarcoma expert here in Santa Monica, for a second opinion. We are very interested in seeing what advice we already have that he aligns with. I would also be interested in sending the scans and reports we have to another doctor at one of the major centers elsewhere, like MD Anderson or Sloane-Kettering. I just feel it's the time to hear every opinion we can get. I suppose there is some danger of confusion, but I would hope that some primary opinions rise to the surface. Rhabdo is just so unusual, extensive research is hard to find.

We find that rare cancers require even more advocacy from friends and family. The path is less clear, and the options more daunting. And until we find an oncologist that makes us feel included and listened to, we'll need to keep up the pressure. C and I were in talking with the Dr. C's nurse and a the doctor that was in that day and we had that same feeling that if we didn't jump in immediately after they said what they were going to say they would bolt out of the room.

We decided next time we would literally station one of us in front of the door so they could see they were not going anywhere until we were done. It's ridiculous. It's what Dr. M did so incredibly well. He sat down, put down his things, and asked if we had any more questions. It seems obvious, and as our friend Jeff said about Dr. M's care, "I'd step in front of a bus for that guy."

Our friend Quinn related her experience supporting a friend through treatment, "The caregivers are forced into this crazy role of insistent headbangers and aggressive wheelsqueakers." Well that's what we'll do, we'll headbang and wheelsqueak.


Thank you to everyone that sends in their words of support and your photos. As Margie said in an email, "Just imagine all these covered wagons circled around...full of the people who love C." Well we feel it, and it's huge, and I hope that's what this blog encourages. As I wrote to a friend the other day, "It's really great knowing everyone is out there. I think that must be a big part of why I write this all down. I've wondered why, and I think that might be it."

Here are a couple photos we've gotten in. Quinn ran into our other friends the Horners on a flight from Boston to L.A., of all places. So they took that opportunity to hold Charlie in the light. I love this photo.



And some dear old friends of ours Peter and Scott got together up in the Bay Area and sent this in. Great to see them again.



Thanks everyone. We'll keep up the wheelsqueaking, C will keep fighting the technologies that don't distinguish between him and the tumor, and we'll get through this.