PMP as Feared Cancer & PMP as Hopeful Research

ALS-TDI Precision Medicine Program

So, today has been a weird day. Kinda surreal actually. I was called by ALS.net (ALS Therapy Development Institute) to be pre-screened as a healthy volunteer in the Precision Medical Program-PMP.  One of the questions I was asked was if I had any history of cancer. I said yes, but it's been almost 15 years since my last tumor and chemo round.  Nineteen years ago, in 1996, I was diagnosed with cancer of the appendix. 

For three years I fought it with all the fun that you can have with chemo and multiple surgeries. I've had every vital organ removed out of my abdominal cavity. At one point I was told, "really, we'll do what we can to save it, but you can live without a stomach." My first thought was, not "ohmygosh, they are going to take my stomach?" but rather, "how will I be able to eat cheesecake?"  

Back when I was diagnosed with my cancer, 5% of people diagnosed with cancer of the appendix survived five years or more.  When my sister, Mary, heard that statistic, she calmly said, "well, someone has to be in that 5%, it might as well be you. That's what we will focus on."  Sounded easy enough.  The first three years of dealing with my cancer didn't look so promising as far as surviving. But, in May of 1999, I had my last round of chemo, and, I'm happy to say, I've been tumor free, and chemo free since then.  

I've lost many friends to this cancer, it's a horrible disease, and "rare."  Hmmm... sound familiar?

Throughout my cancer, Pat Dwyer was always at my side. He was dad, he was mom, he was soccer coach, basketball coach and pool boy. My mom, my sisters, Pat's family all rallied with him and we got through it.

PMP - Pseudomyxoma peritonei

Now, for me, here is the surreal thing: another name for cancer of the appendix is, PMP- Pseudomyxoma peritonei. (This is the same cancer that Stuart Scott, ESPN sports announcer, recently passed away from.)

Crazy, right? That PMP tried to kill me; Now this PMP is trying to cure people.

I haven't been able to get past the juxtaposition of PMP in my day today.

I feel like I am in some weird twilight zone with the letters PMP flashing in front of my face.  All my 30's, 40's and now happily into my 50's, PMP has been a negative term in my life.  Seriously. I still sweat bullets going to my oncologist for my annual check up.

Most times, I hardly think about my PMP, been there, done that...except the week leading up to my check up when I'm convinced the pain in my big toe means my cancer is back. For the past almost 15 years, all has  been well.

But every once in a while something jolts my reality, and my cancer gig days come flying straight at me, like Brazilian bats trying to get into my hair! Today was one of those days. 

PMP - Precision Medicine Program

So now I'm about to start another journey with PMP, this time one I am totally excited about...ALS.net's Precision Medicine Program. Some of my skin samples will be part of the amazing study going on at ALS TDI. They are turning these samples into motor neurons. For people with ALS, who are participating in the study, it means their ALS will be grown in a dish.  ALS TDI will then be able to test drugs in the dish and see if there is something that will help that ALS stabilize or hopefully reverse it.  It's huge.  It can speed up the time it takes to find a treatment for ALS, and it will help to, hopefully, find some commonalities in ALS.  

For me, it's overwhelming. Pat loved weird science and I know he would have been the first on in line to donate some of his skin.  The fact that I get to participate stuns me. Really, when I was caregiving for Pat, there were many, many days where I felt totally inadequate in being able to help him live with his ALS. Some days nothing helped, nothing worked and it seemed like the beast ALS was three steps ahead of us.

I just can't really wrap my mind around the fact that I am going to be starting a new PMP chapter in my life, one that will bring about positive thoughts and results. This is surely a case where you take a negative and turn it into a positive.  But really? PMP-ALS-PMP.  Life is nothing but weird.  But finally, finally I feel like I'm able to do something that would help Pat.  

Instead of inadequate, I feel useful. Instead of three steps behind ALS, maybe I can help move it three steps forward. 

But, mostly I feel proud.  I feel proud to be able to participate in something that could be so huge and help change the course of ALS. I feel proud to be a part of ALS.net as a board member, and as a healthy volunteer in their PMP. 

Finally, it seems there is a real concrete thing I can do to help others move Beyond ALS. I'll be honest here: selfishly, this time, it's a little about me. Helping myself move Beyond Pat's ALS, and our life with ALS, into my life...this time, with a positive PMP by my side.

Note: José Cofiño entered the ALS-TDI PMP in September and is eagerly awaiting the results. His thoughts on the program can be found HERE. Contributions directly to research at ALS-TDI can be made HERE.