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.