In September and October 2012, my book called The Remarkably Healthy Life of a Clutz closed, and my book called Philpott's Fight opened. I was knocked off of my horse, so to speak. In a moment, I found myself injured, unsure and with the wind completely knocked out of me...but not out of my sails. I knew, almost instinctively, that I had to keep moving. What was left to determine was the course I would take. I'm so grateful that early on - even before the diagnosis ever came into clarity - conversations with my sweet wife and with my Father in Heaven led me to choose to focus on controlling whatever I could control and learning whatever I could learn. I learned to say early on, "I may not be able to choose the hand I was dealt; I can only choose how I will play it."
When my doctors told me I had two options - the physical hell to be found in two blood stem cell transplants within three months of each other or death - I knew that there was really only one option. The thought of me leaving Noelle behind as the widowed mother of 5 young children without fighting for my life never even crossed my mind. I owed it to my family and to myself to fight until there was nothing left to fight for. But the big caveat was this: all my optimism and will; all the medical advances that had made a blood stem cell transplant a viable option for me; all the phenomenal care I received from my treatment team at LDS Hospital; all the goodness of countless family, friends and strangers who gave so much of themselves (money, time, food, companionship and prayers) in behalf of me and my family; all of this would not be enough to save my life without one very important element...a donor. My siblings weren't matches, so my team at LDS Hospital would have to turn to the Be The Match Registry in hopes of finding a matched unrelated donor for me. And I knew that all of the hard work Be The Match had done over the years to build a registry with about 11 million potential donors would be for naught (for me, at least) if no one who was a genetic match for me had ever stepped forward to join the registry. My hope for a cure would all come down to one person.
I remember that on the day I left LDS Hospital after my autologous transplant, my care coordinator, Rachael, popped in to my room to let me know that they were optimistic enough that my auto transplant would work well enough to get me to my far more pivotal allogeneic transplant that they were going to begin the formal search for my donor. Out of the more than 20 potential donors that had been identified for me on the Be The Match Registry, they would reach out to the highest-ranked six to request a blood sample to see who would be the best donor possible for me. I had been told that I was a high-risk patient due to my challenging diagnosis and the very unique combination of markers and marker deletions in my DNA. When I left the hospital that day, I had no control over whether or not a donor would be found who would have all of the necessary matching markers for me. All I could control was how hard I worked to recover from my first transplant and focus on getting strong enough to go through it all over again if given the chance. I walked with Noelle every day. Shortly after leaving the hospital I went and walked a 5K (3.1 miles) at an LLS Man of the Year fundraiser - in just under an hour. I ate as well as I could and I rested a lot, but the rest was out of my control. All I was in control of was how hard I worked to prepare for my second transplant, but not whether or not it would ever happen.
Then, on April 9, 2013, the call we had been waiting for came. Rachael called Noelle and I to tell us that a donor had been found who was a "perfect" match for me in every way they could possibly hope for; my transplant would happen. By the time we got off of the phone, I was weeping openly. I wished I could find this 29-year old stranger and give him the biggest hug I could muster with what little strength I had. On that day - one month and 20 days before I would ultimately receive his blood stem cells - I knew that some day in the future I would be healthy and strong enough to travel to wherever that man lived to thank him personally for the gift of hope he had given me, my family, my friends and my medical team at LDS Hospital.
So who was this 29-year old male (that's all I was told about him at the time) who would do what he could to save my life? In 2009, a young woman named Melissa was fighting leukemia and searching for a matching donor. Melissa's family worked with their representative at Be The Match to host several marrow donor registry drives in Melissa's honor. A 25-year old friend of Melissa named Ambros Montoya joined the Be The Match Registry at a drive at New Mexico State in March 2009. Melissa would ultimately find a matching cord blood unit for her own transplant, but she and her family kept pushing for the cure for other patients, adding several hundred new people to the registry. Melissa passed away less than a year after her transplant, but her legacy of selfless service lived on in the hundreds of people like Ambros who had stepped forward to join the registry with the commitment to try to save a life as a marrow or blood stem cell donor when and if asked.
Fast forward four years to March 2013. Ambros Montoya, now a 29-year old single father, received a phone call from Be The Match telling him that he had come up as a match for a 40-year old man with leukemia (that's all he was told about me) and that a blood sample was requested to see if Ambros was the best match for the patient in question. Ambros agreed to give the blood sample, then waited. Though he was unaware of it at the time, Ambros was the only one out of the six people contacted about me who gave a blood sample. About a week later, he was told that he was the best match and asked if he would be a blood stem cell donor. He said that he would, and would later put it in this way, "If you could save somebody's life, I don't know why somebody wouldn't want to." Ambros agreed to go through the donation process, Be The Match let Rachael and my doctors at LDSH know, and then Rachael called me.
Ambros Montoya - this stranger who would step forward to save my life - had just given me the hope of a cure, the hope of being able to live long enough to see my children marry and have children of their own someday, and a tremendous depth of gratitude born of extreme debt that could never possibly be repaid. Rachael told me how long I would have to wait to learn the identity of my donor and be able to contact him. One year. I would have to wait at least one year to attempt to express my thanks. Ugh!
Well... back to what I could control... I continued to prepare for my transplant, culminating with a week of preparation that was somewhat congruous to the week of preparation Ambros went through for me. Fortunately for him, the five days of outpatient injections he endured to prepare his body to have enough blood stem cells to donate only gave him fatigue, headaches and bone and body aches. I had those plus a lot of other unpleasantries as I received Melphalan, a very highly concentrated chemotherapy designed to kill off my Multiple Myeloma...and my marrow. I knew that during that week someone somewhere was making a sacrifice for me that I would never be able to adequately repay, and Ambros was pretty confident that his recipient was going through much worse than what he had to endure. On May 28, 2013, Ambros recalls spending 5 hours or so hooked up to an apheresis machine in Virginia, talking with his mother and sister for a while and then taking a nap, while stem cells were separated out of his blood. As Ambros and his family went out that evening to check out the sights in Washington, DC, his blood stem cells were being prepared and then couriered to Salt Lake City overnight.
On the morning of May 29, 2013 - three years ago today - my nurse, Becky, walked into my room with two American Red Cross representatives with a big white box on a dolly. From within that box, the bag of Ambros' stem cells awaited transfusion into my body. I signed some paperwork that basically stated that if the transplant didn't work we wouldn't sue anyone. =0) Then it began. A new life. And on that day, my desire to someday meet my donor solidified.
100 days post-transplant, 100% of my marrow was gone and had been replaced with Ambros' marrow. 100% of my unhealthy O- blood was gone and had been replaced with Ambros' A+ blood - free of Multiple Myeloma and Plasma Cell Leukemia. When those test results came in, I realized that my donor was keeping me alive in a very real way. I wept again out of gratitude that simply kept growing with each new phase of the journey I was traveling and each new gift Ambros gave me. My gratitude increased tenfold.
In time, my first "transplantiversary" (transplant anniversary) approached. I busied myself organizing a successful marrow donor registry drive on Saturday, May 31, 2014.
Over the two years since my transplant, a lot has happened.
First, I went to work for the National Marrow Donor Program 5 weeks after my First Transplantiversary Drive, and now work as hard as I can to bolster the Be The Match Registry and give other patients increased hope of finding the donors they will need to have a chance at survival. Since starting donor recruitment with Be The Match, over 6,000 people have joined the Be The Match Registry through my efforts with drive sponsors and volunteers - most of them patients, donors and their families - here in Utah, Idaho and Montana. So far, over 100 have been called upon to provide a blood sample (confirmatory typing, as it's called) to see if they're the best match for a patient. And to the best of my knowledge, 12 of those 100 have gone on to be marrow or blood stem cell donors for patients around the world. Needless to say, my work with Be The Match is the most rewarding work I have ever done or could imagine doing. I don't ever want to leave.
Second, my health has improved to my new normal, which, gratefully, is very similar to my old normal. I no longer have to wear a mask every time I go out in public, on a plane, or outside on windy days. I have a functioning immune system. I'm not taking a million pills each day for cancer-related stuff. I have healthy, clean blood coursing through my veins and healthy marrow producing it.
And third, one month ago today, I met Ambros.
After more than a year and a half since establishing contact with my donor, but not feeling any closer to being able to find a way to get my entire family down to New Mexico to meet him, Noelle and I decided in January that I just needed to find a time when I could fly down there to meet him by myself. So in February, Ambros and I started working on putting our very busy calendars together, and we finally found a date that would work for both of us. Friday, April 29, 2016. 35 months to the day after I received his blood stem cells.
Well, when I told my coworkers that I was going to finally be able to meet my donor, my entire team rallied around Ambros and me and for several weeks worked hard to ensure that our meeting would really be ab event. Our Rep in New Mexico began working on organizing a donor drive for that weekend in Albuquerque. Our Rep in Phoenix worked hard to ensure that there would be lots of media coverage. Our Reps in California and Oregon, and even our Regional Director got in on the action, covering our meeting on social media, and ensuring that everyone possible knew about what was happening. And of course, after orchestrating this beautiful team synergy around the whole thing, our manager decided she had to be there to experience it first hand. =0)
So, on April 27, I posted this picture on Facebook...
Then, on the 28th, I posted this one....
By this point, thanks to family, friends, colleagues and strangers, my story was gaining some traction. =0) And then, we found out that the Be The Match Representative who had added Ambros to the registry was my colleague, Aubrie, who's on my team and works in our Phoenix office! That just made the story even sweeter - and she was going to be at the airport for our meeting!
On April 29, I did my best to stay focused as I worked through the day. Then the time came for me to get going.
Here's a link to the video that was taken at the airport - I arrive at the escalator about 15 1/2 minutes in: https://www.facebook.com/bethematchsw/videos/1081913495202253.
One of the news stories: http://www.koat.com/news/transplant-recipient-meets-donor-at-sunport/39295040
And another news story: http://ht.ly/8JWHGx
And one more that was shot on Sunday, May 1, at a marrow donor registry drive: http://krqe.com/2016/05/01/transplant-recipient-meets-albuquerque-donor
I stayed the weekend with Ambros, his wife, Erica, and his daughter, Bella. We hung out and talked a lot, Ambros showed me around Albuquerque, we went to Ambros' cousin's wedding reception, walked along the Rio Grande, worked side by side at a marrow donor registry drive, and spent time being interviewed by local news stations. In the process, I learned a few things about my "blood brother"...
#1 Ambros is a good cook - at least breakfast Saturday morning was no sweat for him, and it was absolutely delicious!
#2 He's an incredibly likable guy. Naturally happy. Generous. And he loves his family. And what's not to love? Everyone in his immediate and extended family seemed to be genuinely good people, through and through. And the ones I spent the most time with, Erica and Bella, are awesome. Bella's my new buddy. =0)
#3 Ambros is incredibly modest about what he did for me. At the wedding reception Saturday night, there were several family members who seemed to be completely unaware that Ambros had been a marrow donor and saved another man's life until they saw news footage of us on TV on Friday night. That blew me away! You'd think a person who had saved the life of another would be allowed the self-indulgence of letting his family and friends know about it. I'm pretty sure only his immediate family knew before Friday night's newscasts.
The weekend we spent together was pretty surreal. We would be talking, and as I looked at him I'd think, "You're the reason I'm alive today. Um...thanks...again." It was kind of funny. Just like saying "thanks" to my mom on Mother's Day seems ridiculously petty considering the fact that she bore my fat head into this world (and chose not to take me out of it when I was young), just saying "thanks" to Ambros for keeping me alive seems equally lame. And I was disappointed - though not really surprised - to learn that the ability to say "thank you" in person still seemed grossly inadequate when considering the gift he had given me. But, I said it over and over and still feel like I fell short of the mark. So, because words fail miserably, I've decided that the best way I can thank him is to live my life in a way that honors his sacrifice in my behalf.
Since April 9, 2013, when I found out I had a donor, I wanted to meet him. With every step I took to put the cancer I had faced and the treatments and transplant I had to endure further and further in my rearview mirror, that desire increased. When I got to the point that my health was no longer in question and I realized just how amazing it was that another human being's marrow was in my body producing his healthy blood for me and thereby keeping me alive - that he was the reason I was able to wake up every day - the desire became a need. And when you've wanted something for as long as I wanted this, and you finally get it, it's typically referred to as...
Closure.
There's a sound of finality in the word "closure." This is not the end of anything, though. It's really the beginning...of everything. Every day is a new beginning, actually. Not just because the sun comes up anew, though that's rather metaphorical for what I'm getting at...to a point, at least. Just as the sun rises each day, we have day-to-day - even moment-by-moment - opportunities granted to us to start fresh. To make new choices. We can choose to cultivate an attitude sour as lemons or sweet as ripe watermelon. We can see the good or the bad in others, recognizing (or not) that what we choose to see in others only highlights the same in our own character. We can focus on serving ourselves or serving others. We can choose to live with fear or with hope. With bitterness or gratitude. We can let circumstances and strife beat us into whatever ill-formed, insecure, powerless creatures they may, or we can shape and mold and choose what we become and thereby choose the very course our lives take. We may not be able to choose how rough or calm the waters may be, but any mariner knows that there's a much lower chance of capsizing when powering forward through a storm than there is when simply drifting along and letting the wind, rains and waves toss them about at their every whim. In every aspect of our lives, in every moment of our lives, we choose who we are and who we will become.
So, as I close the book called Philpott's Fight and open the book of my future, I ask myself, "what do I choose?"
I choose an attitude of sweet hope. I choose repentance and forgiveness. I choose service to others. I choose gratitude. I choose a life with meaning. With purpose. With power. I choose to pay forward the gifts I have received to the very best of my ability. I choose faith in my Savior, Jesus Christ, whose yoke I am privileged share, for as I share His burden, I learn more deeply that He has already taken my own. I choose who I am today, regardless of who I was yesterday, and I choose who I will become throughout the course of all of my tomorrows in mortality and beyond.
Whenever one book closes, a new one opens.
