Closure

Whenever one book closes, a new one opens.

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. 

As exciting as that was, I was even more excited to go to my 1-year workup appointment and fill out the paperwork to request to exchange contact information with my donor. That was within my control. What was not within my control was whether or not he would be willing to share his contact information with me. So I went home and I waited. On June 26, 2014, when I was in Park City on Vacation with my family, I received an email from Rachael with what she referred to as "an early birthday present" - my donor's contact information. Ambros Montoya. Albuquerque, New Mexico. A phone number. An email address. I wanted to call him, but knew I'd be a mess. I wished that I could just show up on his doorstep in that very moment to give him a big hug and say "thank you," but they're still working out the kinks in teleportation technology. =0) So, what was left for me to do but to write him an email, which is found in full on my blog post for that day: "My Wish Has Come True."

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.

And then this happened...

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.

The Other Side

Even when you've anticipated hearing the words for days or weeks, when you finally hear a doctor tell you, “You have cancer,” everything stops. Nothing is ever the same. You’re forever changed. It’s no longer other people’s problem. It’s yours, and there’s no escape. A wall that was never there before now stands squarely in your path. You, your loved ones and your doctors are left to determine what to do about that wall.

Can you go over it, or is it too tall a task? Can you go under it, or is it too deeply rooted to ever be able to dig it out and eradicate it? Can you go around it, or is it too broad and sweeping a challenge to see the end of it? Can you go through it, or are the bricks too hard, too thick, with too many layers of brick after brick? Will you ever see the other side, or is your progress toward everything that awaited you on your road halted forever? Will you ever realize the potential the future holds? Will there even be a future…for you?

These types of questions haunt you as you face the wall of cancer. These questions hurt when you realize that all your best efforts may not be enough. So, what do you do? You work with your doctors to learn what they think will be the best course of action. You discuss your options with your loved ones, attempting to evaluate, quantify and qualify the risks and potential benefits they present. You may also, as I did, pray and seek God’s guidance to determine His will for you. Fight or flight? What should be done? If it’s even possible to make it to the other side of the wall somehow, will the journey over, under, around or through it be worth it or will you be left so damaged by the process that you could never enjoy the rest of the road?

Even as a young, otherwise healthy 40-year old father of five young children, when I was diagnosed with leukemia, some of these thoughts occupied my mind and heart for a few days. Ultimately, I knew there was no choice but to fight, but the question remained: would I ever see the other side of the wall?

When my working diagnosis of Chronic Lymphocytic Leukemia was modified to Multiple Myeloma/Plasma Cell Leukemia, my options became limited. Fight or die. I learned that the only way to the other side of the wall was through it – twice. The simplest way for me to understand my situation was this: my marrow was broken, so to speak, and as long as it remained in control of producing blood for me, it would continue to produce cancerous white blood cells without any immune capabilities. Because of that, in order to have any hope of long-term survival, I would need a marrow transplant, which (if all went well) would allow someone’s un-broken marrow to produce healthy, clean blood for me and give me an immune system to protect me. Unfortunately, PCL is so resistant to chemotherapy that it was unlikely that chemotherapy alone would get my leukemic levels low enough to have a donor’s cells have any success in killing off the remaining leukemia and generating a healthy system for me. I was told that the best chance for my survival would be to go through an autologous transplant first – one using my own “cleaned up” stem cells – in hopes of shocking my body into enough of a remission to then receive an allogeneic (donor) transplant in hopes of providing me with long-term remission and perhaps even a cure. I had to blast through at least two layers of the wall to encounter the possibility of surviving long enough to see my kids marry and give me grandkids.

If you've followed my story at all, you know that my first and second transplants did exactly what they were supposed to do. 100 days after my donor transplant, my marrow was no longer my own, and I was completely cancer-free. My doctors, my donor and God had given me a new lease on life, but my foot was still “stuck” inside the wall. Because of the medical challenges I had in the weeks following my transplant, my leukemia was still holding me and preventing me from putting the wall completely behind me. I was on high doses of steroids and a drug called Cyclosporine, which suppressed my donor’s immune system – the system that was ultimately given to me to protect me – in an effort to keep it from attacking its new host. I couldn't go out in public without my big filtered mask. I couldn't attend church. I was weak. And multiple times a day, I was reminded of my leukemia by fatigue, my bald head, the dozens of pills I ingested on a daily basis, and Facebook posts, phone calls and texts from friends and family where I knew the initial greeting of “how are you” wasn't just a greeting - it was laced with concern. For several months, I was on high doses of a steroid called Prednisone that made my body bloat with retained water. After several months of tapering me off of that, we had to begin slowly tapering me off of my immunosuppressant, Cyclosporine. In the meantime, without a fully-functioning immune system, I was unable to go to Church, go to restaurants at peak (normal) times of day, or go to family dinners when someone was sick with something as seemingly harmless as a simple cold. I still wasn't free of the wall…not even close. Gradually, though, progress was made.

I ultimately got to the point where the steps forward outnumbered the steps back. My strength and stamina increased, and my need to protect myself with a mask decreased to when I was surrounded by people in an enclosed space. Finally, I was able to travel on an airplane with my mask as long as I sanitized my seat and everything around it...a worthwhile 5-minute process. Finally, on April 22 of this year, I took my last 1 mg dose of Prednisone – the last of my prescription medicines given to me to combat my leukemia or one of its side effects. Now, the only pills I take on a daily basis are multivitamins and supplements to support my bone health, which was negatively impacted by my leukemia, and a pill for high cholesterol, which I’d be taking anyway. While the cholesterol pill is the only one I would be taking if I had never had leukemia, I don’t mind the other ones. I think everyone should take a multivitamin over 40 years old, anyway.

As I take stock and look around, I recognize that finally – two years after my transplant – I've reached the other side. What’s surprising to me is to see that the path on the other side is nothing like it was before the wall fell into place. While I was busy fighting through the wall for the past 32 months, God reconstructed my path for me to more closely resemble the road he wants me to travel. So, what is the path on the other side like? Well, it’s nothing like I would have created for myself, that’s for sure, and I'm glad.

First and foremost, the other side is full of gratitude. As I've mentioned in previous posts, every day that I now wake up is truly a gift. So many of those who battle PCL and other kinds of leukemia never see their second transplantiversary. I’m not only alive, but I’m free of the cancer that previously hedged up my way and free of any of the many issues most of my surviving fellow fighters are dealing with. I feel like the reluctant standard bearer for our group, but I’ll bear that flag with vigor, as I know many of my friends can’t. I recognize the losses of health and life that others have endured, and I’m grateful that, for some reason, God has chosen to spare my life and restore my relative health.

On the other side is a path laden with perspective I never had before. I recognize and appreciate simple pleasures more. I tend to cool off faster when I get upset. I’m more forgiving and less likely to argue with others. I’m more patient than I was before. I wouldn't necessarily say I’m a patient person…just more patient than I was before. =0)

The other side is a very different career path than the one I was on previously. It’s now a career filled with passion. I began college as an accounting major, then left until I realized I needed to study something I was passionate about – music. But what happened? While I was working on my master’s degree, I fell into sales, had a good amount of success, and ended up staying in sales because it paid the bills – the practical path. I stuck with that path for 13 years. Then came the wall. My professional career was put on hold for an indefinite time, and what did I realize when I was forced into that hiatus? I realized that if I survived and was fortunate enough to return to health, I didn't want to go back to sales. Was I good at it? Yes. Was I passionate about it? No. I learned (again) that following my passion was better than following the all-practical dollar. But what was I passionate about that would or could support my family sufficient for our needs? My new professional path found me when a volunteer opportunity with Be The Match – the marrow donor registry that helped save my life by finding my donor, Ambros for me – turned into a part-time opportunity, and three months later into a full-time opportunity. What could I possibly be more passionate about than paying back that organization and paying it forward to other blood cancer patients who otherwise wouldn't have a donor available to them? I can’t think of anything…not even music and performing. I have truly found my life’s passion on a professional level.

The other side gives me the opportunity to plan again and think more about the acquisition of memories than the acquisition of stuff. For a long time, it was very hard to plan very far into the future, as my future was in question. Now we’re planning vacations many months in advance, and doing so without reservations about whether or not I’ll be able to go.

The other side is infused with a desire to be filled with goodness and make a difference in others’ lives. My donor, Ambros, gave of himself, dealing with physical discomfort and the disruption of his life to help me. While going through chemotherapy and my recovery from transplant, countless individuals, families, businesses and religious congregations served me and my family with time, gifts, food left on our doorstep, well-wishes, freezer meals, financial support, fasting, prayers and positive thoughts. There is no way for me to adequately thank everyone for their goodness. They were truly God’s hands in the service of the Philpott family. I feel compelled to do what I can to become His hands – to spend the rest of my life in the service of others of His children. When it’s impossible for us to pay goodness back, our only worthy choice is to pay it forward. That’s most definitely something I've found on the other side.

I don’t know how long the path that now lies before me will be. I don’t know how many days I’ll be allowed to walk it. But I do know this: I will walk my path with gratitude, perspective and passion. I’ll do all I can to collect memories along the way and leave goodness in my wake. I may not become “great” in the eyes of men or have their praise heaped upon me, but when I reach the end of my path, perhaps I’ll hear the words, “Well done, thou good and faithful servant.” I hope that is what is on the other side for me.

My Own Eulogy

So, I'm lying here in bed because I don't feel well enough to go to church today. Noelle texted me from church to tell me that there are a lot of people hacking and coughing. While I'm glad I'm not there to pick up any illnesses from people, I'm sad to miss out on church. But really, though, I'm not really sad. A year ago, I wasn't able to ever go to church because I had no immune system, and it would be dangerous for me to go. Today, it's more of a precautionary thing. I feel so incredibly blessed to have come as far as I have.

It's really a miracle when you think about it. Two years and three months ago, I was diagnosed with an incredibly high-risk form of leukemia, with high-risk markers in my DNA. The chances of my survival - even with a stem cell transplant - were low. Noelle and I did what we could to stay positive and focused on a favorable outcome. The hell that Noelle and I went through together and individually is not something I would wish on anyone. However, going through hell has helped both of us to gain an appreciation for God's love and mercy and grace in a way that we could not have gained it otherwise.

I'm so grateful to be in a position in which I know that I will be back to church. There are no worries about whether I will be well again, and there's no fear. My perspective on life has changed a great deal. A dear friend of mine in Sacramento who passed away last year lived with many health issues for many years. Every time I would speak with Patricia, and ask her how she was doing, she would always say, "every day is a blessing." I never really understood what she meant until these last two years. Truly, every day is a blessing…for each of us. It's just a question of whether or not we will recognize it as such, and make the most of that gift that we've received. I may not be feeling well physically today, but my heart is light as I recognize the incredible gift of life that I received in just waking up today. Years ago, I would wake up and take the fact that I woke up for granted. Now, every day that I wake up, I recognize the incredible gift that that is. And I recognize that I have the capacity to use that gift for good in ways that I never imagined before. I'm just one person, but one person can make a tremendous difference in this life. Just think about Nelson Mandela, Mother Teresa, Abraham Lincoln, Jesus Christ. Now, I would never put myself on equal footing with with any of them, but certainly I can look to them as an example of how my life can impact other lives for good. 

I think it really boils down to this: what kind of legacy do we want to leave behind? A couple weeks ago, I attended the funeral of a dear friend…a fellow fighter named Houston Holbrook. Throughout the funeral, as is common, people spoke of what a great man he was. But the thing that struck me was that with every compliment given to Houston, there were multiple examples demonstrating that those compliments were well-founded. And then, what struck me more deeply is that every day we live, we are writing our own eulogy. Is it a eulogy based in rhetoric or reality? Is it a eulogy filled with words about potential that went unrealized, or is it a eulogy filled with examples of how capabilities were turned into accomplishments? I wonder what could be said about me if I were to die today. Would flowery words fall mutely on the ears of people who would wonder, "Who was so blessed to have John in their life? Sure...he was a good guy, but really, did he make such a difference in my life?" I'm not saying that I seek posthumous praise from others. What I am saying is that I want my life to have meaning. Not just to me, but to others. I want to live each day with purpose. And I want to fulfill that purpose. Thoughts and intentions are important, but integrity - living in a way that the outward man is in perfect harmony with the inward man - is what really matters most.

Today - and every day - I write my own eulogy in the way I live.

50 Steps Forward and 5 Steps Back

So… It's been nearly 2 full months since my last post. I'm still working for Be The Match and loving it. But that's not exactly what this post is about.

At the beginning of November, I went to Minneapolis, Minnesota for the national Council Meetings for Be The Match and its many partners across the world. In all, the more than 1,200 attendees represented 32 nations were. A couple weeks later I was back in Minneapolis for the final stage of my orientation and training with the organization. It's interesting. There are several Community Engagement Representatives like me that work for Be The Match who are transplant recipients. Every time I would tell someone that I was a recipient they would ask me "How long since your transplant?" When I would tell them that I was about 17 1/2 months post-transplant, they would invariably be very surprised, saying, "Wow! You look great!" In running drives for Be The Match, sometimes the drive sponsors are transplant recipients, themselves. I get the same reactions from them when I tell them how long it's been since my transplant.

It's so interesting to me. I don't feel like my transplant was all too recent, but relative to how most transplant recipients are doing only 18 months out, I realize more and more that I'm doing exceptionally well. They're right, of course. But there are a lot of days in which I don't feel like my transplant is that far back in the rearview mirror. I've had a couple of those days recently.

I'm completely off of my cyclosporine, the drug that was suppressing my donor's immune system. Half of the pills I take every day are supplements like Os-Cal D, Vitamin D, and Centrum Silver. I'll probably have to take those every day for the rest of my life. Others I will be able to be off of within the next two or three months. Those are pills like penicillin, acyclovir, and a very small dose of prednisone. In just a couple more months, we will be able to start my re-immunization process. This coming spring, when the cold and flu season is over, I won't have to wear my mask in church or on airplanes anymore. There's been some great progress, and I've been able to steer clear of graft versus host disease, and other infections. Unfortunately though, cancer unavoidably leaves its scars.

I have eczema. It's all over my legs, my arms, the sides of my rib cage, and my face. It's made short-lived appearances on my scalp, my back, my bum, and on the tops of my feet. It itches like the dickens, and sometimes, the only relief I get is when I sleep. Sometimes it doesn't just itch… It can be very painful, too. Gratefully it's not contagious, but it's really a pain to deal with.

I developed cataracts following my leukemia and my high doses of prednisone. In October, I had cataract surgery performed on both of my eyes. Now I can see perfectly at a distance, but for things that are close up, I always have to wear glasses. And the issue with that is that I have to wear the right prescription for when I'm working on the computer or reading my phone, and those prescriptions are different from one another. It's really frustrating that my eyes now have no ability to shift focus, even in the slightest degree.

I've lost a lot of my strength and stamina. Granted, I was able to go play golf yesterday with my older brother, George, and my younger brother, Jeff. But today I feel sick and run down. I don't know if it's related, but I do know I was exhausted last night. This morning I got up to shower and get ready for church, and while I was putting topical steroid cream on my patches of eczema, all of a sudden I felt very nauseous, and thought I was going to throw up. I've spent 90% of my day in bed. Gratefully, I haven't thrown up, but I've felt a general malaise, and had a couple headaches. Days like this happen every now and then, and while I know they happen to everyone now and then whether they've gone through leukemia or not, I still sometimes feel like in my case, it's all related. I've always been a very healthy guy, and very rarely sick. 

Depression is perhaps the greatest challenge I've dealt with since last summer. Last September, I was at my weekly clinic visit, and my PA walked in and asked me simply, "How are you?" I couldn't answer without breaking down into tears. All of the losses that I had experienced to that point came crashing down on me, because I had as yet failed to recognize and process all of them. I spent the next 10 months seeing a therapist, and taking antidepressants. A bad side effect of my depression was an inability to control my temper well. Gradually, it got better, but I still deal with hours or days in which depression sets in, and I find it hard to function, even with the coping mechanisms that I have learned from my therapists. 

There are more medical issues I have faced, and currently face, but I will be discreet and simply say that they have been a bother.

So, all in all, I'm doing really well, and believe me, I appreciate greatly the blessing it is to be able to say so. I recognize the fact that with as aggressive a form of leukemia as I had, with some very "high risk markers" in my blood and DNA, the fact that I wake up every day, breathing in and out, with a heart beating in my chest is a miracle. I thank God every day for my donor, Ambros. He made it possible for God to save my life. 50 steps forward.

But there are challenges that have come, that I deal with now, and that will surely continue to come as the days and years progress. They can all be classified at the very least as nuisances, and in some cases, painful and extremely difficult. 5 steps back.

But I am blessed. Of all the friends that Noelle and I have met among other patients and caregivers in the East 8 BMT unit, I'm doing the best out of all of them as far as health is concerned. There are times that I feel guilty that I'm the one doing so well, when others who are quite a bit younger than me are not. I have to push down those feelings of guilt and almost adopt the role of "poster child" for our little group. Other patients in my group don't particularly like me very much right now and their caregivers don't particularly like Noelle right now. It's not that we have become bad people, but that it's hard for others who are struggling so badly to spend time with us or talk with us anymore. There seems to be some resentment, which is completely understandable. Given the situation, if the tables were turned, I would probably feel some resentment, too. All that Noelle and I can really do now is to show and express our love and appreciation for these people who have become so important to us. They are our fellow fighters, and I think of them every day I go to work. Yes, I think of Ambros, but I think even more about my fellow fighters who have struggled so much, and appear to still have so many struggles ahead of them. When I work with Be The Match, I work to create a world in which more people with leukemia, lymphoma, and other blood diseases are able to find a perfectly matched donor, and for the day in which the 250+ research projects that Be The Match funds are able to prevent those patients from relapsing, and experiencing so much challenge with graft versus host disease and other things. Sure, I work for me and my family, but I work for them and their families and the thousands upon thousands of other patients who will be diagnosed down the road and for their families.

As I go back to work tomorrow after the long weekend, I hope to be able to align myself with as many people as possible who share the same vision. If you want to do something - not just hope something - about blood cancers and other blood diseases, let me know. I have some ideas…

Christmas Every Day

Well, on May 31, I hosted a marrow donor registry drive for Be The Match. It went so well that in June, I was recruited to work as the Drive Attendant for Utah - a part-time position running donor recruitment and fundraising activities for Be The Match in Utah. Last month, I applied for a full-time Community Engagement Representative position to run the same activities for the organization in Utah, Idaho and Montana. On Thursday, September 25, I flew out to Portland, Oregon to have my final interview for the position. I nailed the interview and...

I GOT IT!

I began today, and I have to say that this is truly my dream job. I get to do something I'm completely passionate about and get paid for it. There are a lot of people in the world who never get that opportunity. I don't discount that fact. I recognize how truly blessed I have been to survive my cancer and come out happier and more blessed than I deserve on the other side. Now I get to work hard to build a team of Volunteer Ambassadors here in Utah, Idaho and Montana - people who are willing to help me recruit as many people to the Be The Match Registry as possible, and raise funds to help cover the costs of saving lives through marrow and stem cell transplant. Saving lives isn't cheap, so fundraising is a big part of what we do. If you know anyone who might be interested in getting involved, either on a one-time or more regular basis, please let me know.

In the past few months with Be The Match, I've had the privilege of meeting and working with some truly exceptional people. They all have their own individual reasons for wanting to work for or with Be The Match to fundraise and grow the registry. It's interesting. There are a lot of people who are benefitted by people or organizations in a life-changing way, and then say a simple "thank you" and go on their merry way. Then there are others who recognize the impact that person or organization has had on their lives, and seek ways to either pay back or pay forward that incredible gift. Those are the kind of people I get to work with on a daily basis. People with tremendously good hearts who value giving as much as (or more than) they value gifts.

It's like Christmas. Christmas has always been Noelle's favorite holiday. It was always my second favorite to Easter. Easter, I always held, is where Christmas gets its meaning. I mean, if it weren't for the Atonement of Jesus Christ, His magnificent birth would ultimately have been fruitless. But then I got sick. I began to see why Noelle loves - I mean LOVES - Christmas so much. People gave and gave and gave to the Philpott family with no thought or hope of retribution or even recognition. So many gave of themselves - time, talent, money, expressions of love and support, fasting, prayers - and asked nothing in return. Anonymous gifts of food left on the porch, money deposited in a bank account, or checks in the mail were commonplace. What could have been the two least fulfilling Christmases for the Philpotts to experience were the two most memorable and meaningful ones we could have ever imagined. And it's not because of the gifts...it's because of the giving. People were more interested in giving of themselves than anything else. Christmas brings out the best in people - not all people, but many. Now Christmas is my favorite holiday, too.

That's the kind of thing I get to witness in my work on a near-daily basis. A mother of two young children gives hours and hours of her time to plan and execute a donor drive and fundraising campaign in honor and memory of her sister who passed away while waiting for her marrow transplant. Why? Because she and her late sister talked about running a donor drive together down the road. The road ended for one, but the other carries on and gives of herself to make a difference and give hope to others who will make it to transplant. Another woman had the opportunity to be a marrow donor after being on the registry for years. She found the experience of saving a life to be so rewarding that she wants as many others as possible to share in that same experience. One of my "fellow fighters" against this jerk called Leukemia (she calls him "Luke") received one transplant with her brother's cells. It worked only for a couple months, then she relapsed. She went through transplant again, receiving a different brother's cells. So far so good this time around. Even though she never directly benefitted from the Be The Match Registry because she had two siblings who were matches for her, she recognizes that not all are that fortunate. She knows that some of her friends she's made in the BMT unit are only around today because of the Be The Match Registry, so she organized a drive and added nearly 90 people to the registry. A Boy Scout whose mother died of leukemia several years ago wants as many other people to experience the hope that a matched marrow donor provides, so he organized a donor recruitment drive in her memory, giving hours and hours of his busy teenage life to benefit others he will never meet and from whom he will never personally receive an expression of gratitude. It's the "spirit of Christmas" every single day. It's awesome.

So, yes, I'm working again. No, I'm not in sales as I had been for the 13 years prior to my having to leave work for my transplants last year. And though I may not earn as much money as I did at the height of my financial well-being in sales, I have never been happier professionally.

So, if anyone reading this is interested in doing something very, very rewarding with their time and energy, let me know and I can help you sponsor an event to recruit new potential marrow donors or raise funds to allow Be The Match to find donors for patients like me...or both.

And, of course, if you are between 18 and 44 years old and fairly healthy, please join the Be The Match Registry. You never know...YOU may be someone's cure.

Ice Water Is Cold...But Cancer Is Colder.

Ok, everyone. I told you I would do it. Now I have. If you're on Facebook, you can see videos of me being doused with very, very cold ice water EIGHT TIMES! I want to publicly recognize the following people, who have donated at least $50 to my LLS Light the Night fundraising campaign:

Richard and Joy Mann
Sarah Moon
Mel and Lori Roper
Russ and Nancy Merrill
Larry and Becky Ottesen
Jan Hayes
Bill Floyd
Tim and Rebecca Riggs

THANK YOU SO MUCH!!!

I can't really say it was a pleasure to have eight tubs of ice water dumped on me, but it was worth it, and I'm willing to do it many times over. Cancer sucks - BAD - and anything I can do to help the LLS support more leukemia and lymphoma patients like myself, and fund the research that is saving lives every day, is absolutely worth the discomfort I felt for a few minutes.

To watch the videos (which are too large to post here on my blog), go HERE and HERE.

Here's hoping I can buy a lot more ice for this cause over the next three weeks until the Light the Night Walk. Please help if you can. Every dollar counts. You can make a contribution to my personal fundraising efforts HERE, or to my team, "Philpott's Fighters," HERE.

Let's keep those bagged ice companies in business!

Light the Night with Music Update

Well, with two weeks to go before my benefit recital for the Leukemia and Lymphoma Society's Light the Night Walk, we've raised just under 10% of the $3,000 we hope to raise for the LLS. We still need lots of help to reach our goal. The LLS is so important to me and to the thousands upon thousands of patients who are diagnosed with blood cancers every year. They provide ground-breaking research for life-saving medications, marrow transplant advances, and tremendous financial support to patients like me. My family would not have been able to afford all of my medicines (at one point last year I took over 45 pills a day) without the financial assistance of the LLS. Now I just want to do what I can to give back. I have made a donation as a show of my own commitment. Please join me.

To make a donation, please go HERE. Please be as generous as you can.

If you plan to attend the recital (hopefully everyone in the Salt Lake area will), please note in the "Your Message" box how many seats you would like reserved for you. The earliest donations get the best seats. =0) The flier with all of the detailed info about time and location is in my post from August 17th.

This is so important to me. If you're grateful that I'm still around, please make a financial contribution to show it. Here's a little incentive...

Everyone on Facebook has seen by now the ALS Ice Bucket Challenge. Well, something I will do for the LLS is dump a bucket of ice water on myself for every $50 (or larger) donation made to my or my team's page. Sarah Moon and my parents have already made that 2 buckets of ice water. I'll post the videos on Facebook and here. I hope to get frostbite from all of the ice water I'll be dumping on myself! I HATE BEING COLD! If this doesn't prove my determination to see this through, I'm not sure what will. Please help.

Eye Surgery. Ugh!

Darned Prednisone! I thought all you did was suppress my immune system and make me fat!

Once upon a time - about a year ago - my body began to balloon from 170 pounds to nearly 250 pounds over the course of a couple months. This was all thanks to a steroid I had to take called Prednisone. Fast forward to yesterday. I sat down with an ophthalmologist to see why over the past few months I've noticed blurred vision in my eyes, and particularly in my left. Well, as it turns out, my prolonged exposure (about 6 months) to high doses of Prednisone along with my acute illness (leukemia, if anyone is still unclear) have given me cataracts well before the age when they typically develop for those who get them. My vision isn't so bad (yet) that I need cataract surgery immediately, but I will need it eventually.

Cataracts are basically clouded lenses inside the eye, causing (in my case) blurred vision. I have a follow up appointment with my ophthalmologist on December 3rd to see how things are looking. He says my cataracts could advance slowly or quickly...it's hard to know because of the cause of the cataracts. With cataract surgery, the lenses inside my eyes will be broken up and suctioned out, then replaced with synthetic lenses. Super fun. They'll do one eye, then wait a couple weeks before doing the other. After the surgeries, I'll probably at least need reading glasses. My vision insurance won't cover the surgeries. Hopefully my medical insurance will, because they're not cheap. Bummer.

In other news, I'm still working for Be The Match and loving it. It feels so good to be doing something day-in and day-out that can make a difference for other blood cancer patients. I've run 8 drives, adding over 250 new people to the Be The Match Registry, and generating over $4,000 in fundraising. And I'm still learning how to do what I'm doing. It'll only get better from here.

Lastly, I'm in the final stretch run of tapering my Cyclosporine (immunosuppressant drug). After I'm off of it completely next month some time, we'll be able to make plans to re-immunize me. That's a big deal. Here's hoping my taper continues to go well without any GVHD. Fingers and toes are crossed.