Sunday, September 15, 2013

Meeting Jenny. My new raison d'etre. And the importance of clinical trials.



I've said on this blog many times that for some reason, God led me down the crazy path my life has taken since January 2012 when I was diagnosed with Multiple Myeloma, fled an abusive alcoholic husband, and moved two states away-- all at the same time. He has a plan for me and my job is to listen, and be flexible and open minded.

About a week ago, I got a DM on Twitter from @mpatient. "From your blog, I think you live in Utah. So do I." I looked up @mpatient's profile and Tweeted back. @mpatient is Jenny, she lives just a few miles from me, is just one year older, and was diagnosed with Multiple Myeloma in 2010. She, too, is treated at Huntsman Cancer Institute (I can't believe we've never "run" into each other, considering I'm there all the time!) and had tandem stem cell transplants (just like me), followed by a year of maintenance therapy (of which I'm almost done!), and then one more year of another lighter type of maintenance (mine is still TBD). She's in remission (hooray!).

Jenny and I met for lunch on Tuesday and again on Friday (we both had appointments at Huntsman so we went up to the cafeteria for a late breakfast-- me pushing my IV around). Anyhoo I felt like I just met one of my new best friends. We share so much in common and our passion is, of course, trying to find a cure for cancer, supporting fellow cancer warriors, and anything else in the cancer community.

What makes Jenny unique is that she started a radio show in which she interviews top researchers and doctors of Multiple Myeloma. She is on a quest to speed up a cure of Multiple Myeloma, as she doesn't want to be in and out of treatment, remission, and so forth forever. She wants to be cured. Wow- me too! Check out her site at www.mpatient.org. Better yet, this interview says it all http://www.mpatient.org/dr-don-benson-discusses-the-benefits-of-participating-in-a-clinical-trial/  (By the way, how she finds the time to do all this stuff is remarkable considering she has SIX children!)

One thing Jenny learned is the critical need for us cancer warriors to get our butts into clinical trials. In childhood cancers, some 75 percent of kids are in clinical trials. Parents tend to pull out all the stops in getting their children well. When it comes to adult cancers, the participation drops to something like 5 percent. Oh my gosh. Why the discrepancy? Because us adults have competing priorities-- kids, jobs, commitments. So we tend to sit back and wait for someone to cure us. Now that I think about it, I think I should do something more. So what can I do? What can any cancer warrior do?
  • Participate in a clinical trial!
And I can also help Jenny promote her site, her important work, and spread the word that clinical trials are a critical necessity in finding treatments and cures for cancer. And, cancer warriors and caregivers, here's some important info: Rarely does anyone in such clinical trials receive a placebo. Participants either get standard of care or the next best upcoming treatment. I didn't know that but I do now. And so do you.

So what are we waiting for? Ask your doctor, visit mpatient.org, and search www.clinicaltrials.gov.

Back to meeting Jenny. I firmly believe that God connected us together for a reason. Maybe we can make a difference in the cancer world.