I believe in God. I love Jesus. And I pray a lot. I believe that God is sort of hands-off. There are some really horrific things going on in the world that I can't even wrap my head around and God loves those people as much as he loves me. So I don't believe he necessarily answers and solves all problems because if he did, there wouldn't be such indescribable pain and suffering. So when I pray, I mostly do so to build a relationship with God. It's a lot of conversation and questions, and I sometimes ask (beg) for help and guidance. If I don't get THE ANSWER, it's ok because I don't expect literal answers. Because if I did, I could never justify why my prayers are answered and, say, the women in Syria who are begging for water to give their children don't have their prays answered too. But I can't deny, either, the times that I have felt His presence and, yes, have been given an answer to my prayers. Guidance. Comfort. A nudge or prodding...
So with that preamble is my latest story. On Friday night, I fell asleep while praying. I was explaining to God that with my myeloma treatment, I had some pretty big decisions to make very soon. Earlier that day, I spent an hour on the phone with my medical insurance provider working on permission to get a third opinion back at Mayo in either Scottsdale (where I went between two tandem stem cell transplants in 2012) or Jacksonville (which is just minutes from my future in-law's home). Because Huntsman Cancer Center at the University of Utah in Salt Lake City wants to transplant me again. And I am savvy enough in the myeloma world to know that this is not the only approach to treating me. There are loads of different drugs and drug combos. Transplants aren't fun and I don't feel like starting from scratch again. Or do I? Personally, I want to try Daratumumab and/or pomalyst. And a whole host of other things for years (and hopefully years) until there is a cure or I feel I must embark on salvage transplant or even an allo transplant. I hope that is never.
...Hence my prayers. Please God, help me! I am (this is reality) a walking dollar sign. I represent a ton of money to anywhere I am treated. I know that (most) really good oncologists and treatment centers have the right intentions. I know that Huntsman is great at doing transplants. But... but... but.... HELP ME! Are they recommending transplant because that's part of their business model? Or is this REALLY such a fabulous option? I must decide-- no one else.
So on Saturday, I had scheduled a meet-up. I "met" this person on Twitter who had found my blog because of my divorce story, not myeloma. And, as it turns out, he is also an 18-year myeloma survivor (yes, 18 YEARS!!!) and medical doctor. He had a family practice when he was diagnosed 18 years ago (I had to get that in there one more time because 18 YEARS is really awesome!). Long story short, this myeloma survivor is no longer practicing medicine (after a transplant, you can't really be around sick people all day long). But he is highly involved in the myeloma community. He helps review drugs before they approved by the FDA, helps other myeloma patients navigate the emotional and physical tolls of treatment, and much more. Plus, since he is a myeloma survivor, he "gets" it from a patient's perspective as few oncologists can. As we talked about our shared disease and I shared my predicament, he had all kinds of fantastic advice. And he offered to review my latest staging tests (which will be available in a week or so) and provide his expert advice on what he would do. (And, at least so far, it doesn't include transplant-- hooray!)
Oh my gosh. An answer to pray? I say YES.
I spent several hours with this myeloma warrior and after our meet-up, I felt relief, gratitude and confidence. I don't know what the future holds but I do know that I will never let this disease kill me. I won't let it define me. And I will thrive and love life every single day that I can.
So beyond BIG DECISIONS I am committed to jumping out of a plane soon, going to the Middle East (Dubai?), the Holy Lands, and getting married in FIVE WEEKS.
I'd share a whole lot more about my meet-up yesterday but until I get permission to divulge names, I'll protect privacy. But this is a BIG huge story that will be told with permission.
On this beautiful Sunday morning, I celebrate LIFE and my faith. It's as simple as that. A little gratitude.