Thursday, November 29, 2018

Well Shit

A couple of years ago, I made friends with Rich. We connected because we both had "vs" in our blog name...oh and we both were myeloma patients and had similar outlooks on life.  His blog and tweets were amazing. Powerful, honest, sincere, inspiring, touching and all that. And I'm probably selling his writing and voice short. Rich has been absent from twitter for the past few weeks. We all knew he was having a tough time and had blasted through, unsuccessfully, all available treatments, including a CAR-T trial that didn't work. It's a reminder that there is still no cure and that even something that folks think is the end all to be all, doesn't work on everyone. This week, the community has been  asking each other if we've heard from Rich. Well, today we found out that Rich passed away earlier this week. He had a wife and a young daughter who was his world. It's sad news.

I strongly recommend you going to richvsmm to read some of his posts. Really strong stuff.  This is his last post:

Dancing with the Dead
October 19, 2018

It’s been a weird month. Granted they’re all weird months when you’re terminal, but for whatever reason this one especially so.
Almost every night for a few days now I’ve having really vivid dreams that include people from my past who are dead.  This morning I woke up and it took me a good five minutes to realize who my daughter was or why she was there, as I was laying in bed with a friend who had died years ago from cancer. They’re all like that. Bizarre.
This is now the second week of being on Selinexor. My doctor managed to get me the drug via the compassionate use deal, which is pretty crazy. He said the company was awesome to work with, though, constantly asking what they could do to make it easier, etc., so props to Karyopharm. That’s no bullshit either — I hope this works for obvious reasons but I really appreciate their attempt to keep me around for my daughter for a little longer too. I’m not sure when we do the next MM tests but my fingers are crossed.
Not sure what else to talk about, really. I’ve felt like Hell all week and just been dealing with 1,000 little petty things, stupid things, useless things. Certainly nothing to get into here. I just game, hang with the kiddo and try to stay alive through it all.

1 comment:

Berenson Oncology Success Rate

 Some reading about my myeloma specialist's success rate. A press release and an article from Targeted Oncology.