Coffee with All4Cure - Josh (3/3)

As a young myeloma patient, I, and many others like me, are confronted with three big challenges. There's work, parenthood, and the reality of a patient’s parents being around to witness their diagnosis. My parents have had a hard time with this. They keep a lot to themselves, and I think it has gotten easier for them, over time but my dad is 80, and my mom is in her 70s, and even though I am 50 it doesn’t change the fact that I am their child.

As a father myself, it's unthinkable to contemplate a world where your kid dies before you.

As for work, I am in a position where many people report to me and rely on me. I know other people with cancer at my firm who choose not to tell anybody. I think everyone needs to make the decision that is right for them – there is no right answer. For me, due to my advanced myeloma stage, that felt like less of an option since I was so obviously sick – on crutches, losing my hair in advance of my transplant, et cetera. I chose transparency about it to anybody who would ask, and I sat everyone in my department down and told them what was going on. I work someplace that is entirely supportive, and that's been a very fortunate case for the last seven years.

Finally, probably the most important challenge is with the children of myeloma patients. When I got diagnosed, the only thing I thought about was my family and being around for them. All of my children were under 10. I decided that I had to be around for 20 years at the bare minimum. Now that it has been seven years since my diagnosis, I would like to press reset and say another 20 years from now and et cetera, et cetera. I have a level of optimism that I have a long way to go. I can deal with quality of life issues; what I want to have is a long duration of life. There has been fantastic progress made in myeloma treatments, even since I was diagnosed. I'm taking drugs now that were not available or were much less available at the time of my diagnosis. There is more and more in the pipeline with the perfecting of CAR-T and CRISPR technology. That research gives me a level of hope that I'm not going to go anywhere anytime soon, and that's important.