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.

Light The Night With Music

Hello everyone. Please help me give back to the Leukemia & Lymphoma Society. They are responsible for funding much of the research, medications and scientific advances that have given me a life after Leukemia. My extremely talented friend, Amanda VandenAkker, has agreed to help me present a wonderful recital of some exceptional music from the musical stage. 100% of prodeeds benefit the Leukemia & Lymphoma Society. Here's a copy of the flier for the recital:

I've created a Facebook event page. You can reach it HERE. Please go to the page and "join" the event if you can make it.

If you can come, please go to my LLS fundraising page HERE to make a donation to reserve your seat. All who make a donation of $10 or more per person will receive preferred seating at the recital - the sooner you donate, the closer you sit to the front.

If you can't come, please still make a donation on my LLS fundraising page. If all of my Facebook friends were to make a donation of just $10, we would raise over $6,000 for an organization that means a great deal to me and my family. Please be as generous as you can.

Amanda and I are excited to perform for you. We hope to have standing room only in a room that can seat 200 or so.

Please share this post with as many people as you know so we can maximize our fundraising potential.

Thank you so much!

"Every Day Is A Blessing!"

I am a cancer survivor. Every day since my diagnosis, I've been a survivor. The trick, I think, is to ensure that I don't just leave it at surviving.

I choose to live.

I consider October 4, 2012 (the day I heard my first oncologist, Dr. Richard Frame, say the words, You have leukemia) the day my first life ended. Every day since then I recognize as a blessing. Every day is a day added to my life. Thinking that way has helped me keep perspective on the crappy days, which have been many.

Let me tell you about Patricia Kling. She's an amazing woman I've known for about 10 years, who passed away Wednesday morning after LIVING with cancer for many years. When I had the opportunity to see her at church or in her home, she would say something to me that has always stuck with me, and that resonates with me now a lot more than it did before 10/4/12. I'd say, "How are you, Patricia?" She'd say, "Wonderful, John. Every day is a blessing!" The amazing thing is, even on the days I knew she was in a TON of pain, her answer would be the same...and incredibly genuine in its delivery. "Every day is a blessing!" Here was a woman who learned to love and recognize the beauty in simple things, like breathing in and out every day; like the newly blossomed flowers outside her window; like the tender and abiding love of her devoted husband, David; like the fact that she had so many wonderful friends who loved her and whom she loved, and loved deeply. When my own cancer diagnosis came, I began to think of Patricia a lot, though we were separated by two states by that time. Her attitude and outlook have been an inspiration to me throughout my cancer journey. Now I find myself saying, "Every day is a blessing" all the time. And I mean it.

I have not been battling cancer for 22 months. I have not been fighting it. It has disappeared for now or forever - I'm not sure which - but has left its indelible mark on my body. It will do what it will do, and I have no control over it. I do, however have 100% control over my attitude. Several of my AMAZING nurses on East 8 have commented to me that a great attitude lends towards a great outcome - doesn't guarantee it, of course, but makes it more possible. What I've come to believe is that a great attitude - one that says "I've been a 'cancer survivor' every day since my diagnosis" - gives me power over my cancer. Not control over it...power over it. I don't control the cancer, but I do control myself and my response to its presence in my life. Don't get me wrong...my wife, my kids and I have all been known to say, "I HATE STUPID CANCER!" But my life is a gift. A gift I used to take for granted. A gift I used to complain about. I used to gripe about a lot of stupid things...work, my boss, the weather, my kids, my hair, my WHATEVER! Now, I don't complain about a whole lot of things, because I recognize how incredibly fortunate I am to be around to just experience life, both the good and the not-so-good.

I recently met another "survivor" who impressed me from the get-go. McKaylee ("Mac") and I were seated next to each other in the East 8 clinic, getting our particular infusions for the day. Seated to my right was a woman with a blood disorder who was lamenting about a lot of things. She painted a bleak picture. Now, I don't discount her situation, or judge her for her perspective on it. She had some pretty serious troubles. But seated to my left was this 19 year-old single mother, who was there for about 8 hours (as I recall) with her not-yet-one-year-old son, and her mother. We talked for a while about her AML, her son, Dax, my work with Be The Match, etc. What we discussed is far less important to me than what I learned about her just by interacting with her in the time we were there together. Though still adjusting to this cancer journey thing (she was just diagnosed on February 20), Mac has a light about her. She exudes happiness and beauty and life. I kept thinking, "Here's a young woman who gets it. She's naturally happy. She may not enjoy every aspect of what life has handed her, but still she finds a way to smile and shine." Oh, and give of herself to others. Mac has not had a marrow/stem cell transplant, and it's still uncertain whether she will need one or not. When she learned of my position with Be The Match, she asked me if she could get involved, be a volunteer at a drive, something. Even though she was not directly impacted by what Be The Match does, she knows of its importance in the lives of others and wanted to do something about it. Was it just lip service? No. She will be accompanying me as a volunteer at a drive I'm running down in Utah County this evening. No pay. No personal connection to the organizer of the drive or the marrow transplant survivor in whose honor the drive is being held. Just a sincere desire to make a difference. Every day is a blessing for Mac, and she is seeking to use her day tomorrow to bless others. Yes, Mac is a pretty cool young woman. I'm so happy to have met her.

"Every day is a blessing!" Thank you, Patricia Kling, for that sincere answer of yours which has become my new mantra. Thank you, God, for putting people like Mac and Houston and Rebecca in my path, who demonstrate what it means to LIVE, and not just survive.

In Sales No More...

In June of 2000, just a couple months after Abigail was born, I went into sales. I was good at it, and for nearly 13 years, I stayed in sales, sales management and sales training. Professionally speaking, sales is about all I've ever known. Then, on February 14 of last year, I had to leave my sales job to have my two stem cell transplants and wait to recover enough to go back to work, a process my doctors anticipated would take at least a year. Tomorrow, exactly 17 months after leaving work for my transplants, I am going back to work. To sales? No. Stepping away from my sales career gave me the opportunity to discover that while it's something I've always been good at, it's not something I'm passionate about any more. There are some aspects of sales, sales management and sales training that I do love - helping people, seeing others grow, knowing I'm making a difference - but I've learned that I have another option available to me that will allow me to accomplish those things while doing something I am and will forever be passionate about.

Effective tomorrow, I am the Utah Drive Attendant for the National Marrow Donor Program (NMDP), or Be the Match. I am responsible to work with sponsors of donor recruitment drives throughout Utah to organize and carry out their recruitment and fundraising efforts for Be the Match. For those who don't know or don't remember, Be the Match is the organization that found me my donor, Ambros, last spring. Without Be the Match, I would likely be dead today, or suffering through heavy chemo to simply prolong my life without any quality of life. Unfortunately, there are over 10,000 Americans every year in need of a life-saving marrow or stem cell transplant, and many of them are told that there is no match for them among their family members or on the international registry. Last year I made the commitment to myself that as soon as I could, I would do everything I could to give back to the organization that gave me my donor and the chance at life. As a volunteer, I've already organized and/or run three marrow donor recruitment drives - two of my own, and one for an Eagle Scout project down in Spanish Fork in June. Now the NMDP will pay me to do something I was already willing to do. I'll just end up doing it 20-30 hours a week. That's pretty awesome, if you ask me. I've got a two-day drive scheduled for this coming weekend up in Cache Valley, and 5 or more in August. I've been tasked with developing a team of Volunteer Ambassadors to help me run drives around the state so I don't have to be at every one of them, and so I can function in more of a local administrative role. Even with a full team of Ambassadors qualified to run drives on their own, though, I'll never stop going to drives myself, as they're how donors are found and I love being in that environment.

In other news, my GVH of the skin was, in fact, not GVH of the skin. I have gotten eczema, a skin condition with dry, pinkish blotches in different areas of my body. How I've ended up with eczema at 42 years old when I've never had any skin issues before I'll never know. I'm just glad it's not GVH, so we can continue tapering my immunosuppressant, cyclosporine. I can't be re-immunized until I'm off of that stuff, so tapering it is my #1 priority. Hopefully, I'll be done with it within the next 3 to 4 months. Then I should be able to be out in public without wearing my big white mask everywhere I go. I can go to church for all of my meetings, be more active, and worry less in general. It's good to be close to that point...we hope. =0)

Other news...I got a car. I had to sell my Toyota Corolla last February to help us pay some bills and lower our monthly expenses, so since then we've been a one-car family, which has become increasingly difficult over the past several months as I've been able to get out and do more things. Now that I'll be traveling a bit for work, one car just won't do. Did I get another Corolla, the model I've had for my last two cars, spanning about 10 years? Nope. I got something my big body will be comfortable riding in on long trips. I got a 2012 Chevy Malibu, and I absolutely love it. It's comfortable, got plenty of power, gets good mileage for a mid-size sedan, and has bluetooth for my phone, which I love.

With my new job, I'll be teaching fewer voice students, which kinda stinks, but it's OK. I'm keeping everyone I currently have through the end of August. On August 28th my voice studio will be putting on a recital with solos and duets from all 13 of my students. After that, I'll only be able to teach as many students as I can comfortably teach on Wednesday evenings and Thursdays.

*** ANNOUNCEMENT ***
On Thursday, September 11, 2014 (exactly two years after the shoulder injury that changed and saved my life), my friend, Amanda Van Den Akker and I will be putting on a musical theater recital to benefit the Leukemia and Lymphoma Society for the Light the Night Campaign. While the recital will be free of charge, Amanda and I hope that everyone who comes will make a generous (100% tax-deductible) donation to the organization that funds more Leukemia research than any other in the U.S. They also provide tremendous financial support to Leukemia patients like myself. I will be posting fliers for the recital here and on Facebook soon. If you can come, I promise it will be a rewarding evening for you with great music from throughout the great history of american musical theater and an opportunity to help many leukemia patients in need of assistance. If you can't make it, you can still donate. In either case, please visit my fundraising page, and help me help other Leukemia and Lymphoma patients through this amazing and incredibly important campaign. Here's the information for the recital:

John Philpott and Amanda Van Den Akker in Concert

Thursday, September 11, 2014

6:00 p.m.

Summerhays Music Recital Hall

5420 S Green St, Murray, UT 84123

My Wish Has Come True

Today I received an early birthday present (my birthday is this Saturday). I received an email from Rachael Beers, my Care Coordinator at the BMT unit, containing...

MY DONOR'S CONTACT INFORMATION!!!

I can't express how happy that made me. His name is Ambros, and he lives in Albuquerque, New Mexico. After contemplating what in the world I might say to the man who saved my life (as if I hadn't thought about it before...), I just started writing the following email:

Hello, Ambros.

I am so happy to be writing to you. My 42nd birthday is this Saturday, June 28, and I can't imagine a better birthday present I could possibly receive than your contact information. For the last 13 months since my stem cell transplant on May 29, 2013, I have wanted nothing more than to have the opportunity to contact you personally to say one very simple thing:

Thank you for saving my life.

Writing those words seems so incredibly inadequate. You may or may not realize it, but without your stem cells that have created new, healthy marrow, which now produces healthy, cancer-free blood cells for me, I would likely be dead by now. I have a wife and five children (ages 8 to 14), and we all thank God for you and for your willingness to reach out and save a complete stranger's life. What you did was extremely selfless and has put me in your eternal debt. Thank you, thank you, thank you. Since last April, when I learned that a donor had been found for me, I have thanked God daily for "my donor"  - now I can thank God for Ambros.

Perhaps I should give you some information about me and the cancer you saved me from. My name is John Philpott. I was born in Southern California, and raised primarily in Northern California in a city called Santa Rosa, about an hour north of San Francisco. I received my Bachelor of Music in Vocal Performance from Brigham Young University-Hawaii, and my Master of Music in Vocal Performance from California State University-Sacramento. I was married on December 27, 1996 to my college sweetheart, Noelle, and we have since had one child by birth and added four children to our family by way of adoption. In 2009, following the finalization of the adoption of the youngest of our children, Noelle and I followed our guts and moved our family from Sacramento, CA to Taylorsville, UT, right in the heart of the Salt Lake Valley. We knew we needed a bigger home in a more family-friendly environment than what California could offer us. We did not know how critical that move to Utah would be in ultimately saving my life.

In September 2012, I injured my shoulder while doing a pushup. I know, sounds pretty wimpy, right? That shoulder injury led to a doctor's visit, which led to a visit with an orthopedist. He took some x-rays, but could see nothing conclusive that would explain my extremely limited range of motion and severe pain in moving my left shoulder. He ordered a series of MRIs on my shoulder, shoulder blade, and upper arm. A few days later, he called me saying that there were "bone marrow changes in all of the bones they could see, and lots of it." He told me he needed me to come in the next morning for some blood tests. I went that Wednesday morning, and on Thursday afternoon, he called to confirm what Noelle and I had feared. He said that my white blood cell counts were through the roof and the pathology came back abnormal. He referred me to an oncologist and hematologist.

On Friday, October 4, 2012, Noelle and I met with Dr. Richard Frame, a leukemia specialist, and were given a working diagnosis of Chronic Lymphocytic Leukemia, or CLL. We scheduled my first round of chemotherapy, which was to be given in his office as an outpatient, beginning on Monday, October 15th. In the intervening week, I was to go to Intermountain LDS Hospital for some tests to nail down my official diagnosis and determine just how advanced my leukemia was. When we arrived at Dr. Frame's office on Monday the 15th, he brought us in, sat us down and told us that I didn't have CLL after all. He was waiting for one more test result to come in to confirm the findings of the other tests, and we wouldn't proceed with the chemo regimen we had planned. We would do a 30-minute infusion of Zometa (a bone strengthener), and then he would call us later that day.

That afternoon, he called and told me I had Plasma Cell Leukemia (PCL), which is an extremely rare form of Multiple Myeloma. He said it's typically found in patients who are well into their 60s and beyond (the median age at diagnosis is 67; I was just 40), and that I was in for what might turn out to be a very long battle for my life. He  said he was turning my care over to the Blood and Marrow Transplant (BMT) unit at LDS Hospital, as I would ultimately need a marrow transplant in an attempt to save my life. The next morning, I received a phone call from Rachael, my care coordinator at LDS  Hospital's BMT unit, telling me they needed me to come be admitted to the hospital that day, and that I would likely be there for about 6 weeks to induce my chemotherapy and treatment for my leukemia.

Plasma Cell Leukemia is a blood cancer that is caused when a person's DNA "breaks," in a manner of speaking, and begins telling the marrow in their body to produce faulty white blood cells with no immune capabilities. Those cancerous "blasts" eat their way out of the hard white bone matter, causing the bones to become very porous and brittle, which is why I suffered a partial separation of a tendon from my lower-left shoulder blade the month before. The shoulder blade was just too porous for the tendon to hold on to it with the stress of the pushup. Plasma Cell Leukemia is extremely aggressive. My doctors believe that six months before diagnosis, I was still cancer free. Tests in early October showed, though, that 74% of my white blood cells were cancerous blasts. Undiagnosed and heading into the cold and flu season, I was just a month or two away from catching some bug that my body would have no chance of fighting or surviving.  Imagine...I could have died from a cold or simple flu bug. Thank Heaven I hurt my shoulder. As it is, the prognosis for patients with PCL is very, very poor. I am fortunate that

Gratefully, LDS Hospital's BMT unit is exceptional at what they do. It's overseen by a group of 7 incredibly talented and dedicated blood cancer doctors who truly work together as a team to treat hundreds of leukemia and lymphoma patients each year. After looking into the options I would have had in the Sacramento area, I've decided that God truly led Noelle and I to move to Salt Lake City to receive the best treatment I could possibly hope for from a true team of professionals who have become like family to me. T he 6 weeks I was initially expected to be in the hospital turned out to only be 5 days. After beginning my chemo and seeing that my body was withstanding it pretty well, my doctors said I could go home and continue my chemotherapy on an outpatient basis. I was thrilled. Over the next 16 weeks, I went through 4 rounds of chemotherapy, and was admitted to the hospital once more for one of my two bouts with pneumonia. Gratefully, my body continued to avoid the most horrible of possible chemotherapy side effects, and I was even able to continue working until Valentine's Day, February 14, 2013.

I was admitted to the BMT unit shortly thereafter for the first of my two stem cell transplants on February 22. We were going to do what is referred to as a "tandem transplant," when a patient is given his own (cleaned) stem cells in an effort to shock the leukemia into remission for a couple months before going through the donor transplant. I spent three weeks in the hospital for that transplant, suffering an infection in my lower large intestine, but recovering OK. I was sent home to recover fully and prepare for a hopeful donor stem cell transplant, provided a matched and willing donor could be found for me. My first transplant only had the power to stem the tide, so to speak, as my own marrow would ultimately produce the leukemic cells again. I would need someone else's marrow to produce my blood for me if I was going to live. On April 9, 2013, Rachael (my care coordinator) called me with news that would change my life forever. A donor had been found, and he was a perfect 10-out-of-10 HLA match. Over the next few weeks, we worked out the timeline and my second (and much more important) transplant was scheduled for May 29, 2013...my re-birthday.

Over the week leading up to my transplant, I was given very high-dose chemotherapy to completely wipe out my own marrow. Then on the morning of May 29, representatives from the American Red Cross walked into my room with your frozen stem cells. They thawed them out at my bedside with a special machine, hooked them up to my IV, and my new life began. Noelle and I celebrated my rebirth with a little chocolate cake right there in my hospital room. Over the next couple weeks, your stem cells circulated through my blood stream, found their way to my hollowed out bones, set up shop and began to generate bone marrow...good, clean, healthy bone marrow. That marrow produced clean, cancer-free blood for my body for the first time in about a year. I was released to go home on Friday, June 14, just in time for Father's Day.

The next several months were pretty hard. I spent another 3 weeks in the hospital with failing kidneys and liver, and medicines that weren't being filtered out of my system. I don't even remember most of the first 12 days of that hospital stay, as the medicines turned into toxins in my body and reduced my brain activity to only about 1/2 of normal. Following that hospital stay, I needed 4-1/2 months of physical and occupational therapy to help me regain my strength, balance and coordination again. I had to take steroids that caused me to gain a ton of weight and look a little like the Stay Puft Marshmallow Man for the 5 months I had to take them. Gradually, though, I have regained my strength, relative health and a sense of quasi-normalcy.

For now, my...uh...your immune system is still being partially suppressed by a medication called Cyclosporine (Cyclo). With transplants, the donor's immune system can fight against the recipient's body systems like the skin, eyes, GI tract, nervous system, liver, kidneys, etc. It's called Graft vs. Host Disease (GVH or GVHD). While I was in the hospital after receiving your stem cells, I got some GVH of the GI tract that made it very difficult to eat, swallow or digest anything for several days. Over the past few months, as we've been slowly tapering my Cyclo dosage, I've been getting some GVH of the skin, but it's very mild. I've lost the majority of my body hair and my skin gets dry, bumpy and rashy at times. It's nowhere near as bad as it can get. A friend of mine is currently suffering from GVH of the skin, and looks and feels like a burn victim.  We hope to have me completely off of the Cyclo within a few months from now so your immune system can begin protecting me the way it protects you.

Overall, I feel pretty darned great. My family is actually on vacation this week in Park City, UT, and we're enjoying ourselves thoroughly. I've been cleared by my doctors to go back to work part time for a while to assess how my energy levels hold up before going back full time. I'm in the interview process with the National Marrow Donor Program (Be The Match) to be hired as their Drive Attendant for the state of Utah. I'm already a Volunteer Ambassador, and have run three  marrow donor recruitment drives already. Now, I'd be paid to do what I've been doing as a volunteer. I decided after learning that Be The Match had provided my donor for me that I wanted to give back to the organization that had given me my life. How cool that they're willing to pay me for what I've already been willing to do as a volunteer.

Anyway, since September of 2012, shortly before my diagnosis came, I've been keeping a blog to chronicle my thoughts, feelings and experiences as I've battled for my life. If you'd like to read any of it, here's the link: http://philpottsfight.blogspot.com. I'm also on Facebook: https://www.facebook.com/philpottdad.

I'm sorry this email is so long, but I wanted you to know what my path has been like and what your part in it has been. Without you, my chances of surviving my leukemia were basically nonexistent. With you and your stem cells, I have the chance of living for years or even decades beyond today. Being able to thank you for that gift is exactly why I have been so anxious to reach my first "transplantiversary" (transplant anniversary) and request your contact information. I would be thrilled to learn more about you, as well. All I've known until now is that my donor was a 29-year old male at the time of his donation. Now I have your name address, email and phone number. What else can you tell me about yourself? Married? Kids? If so, please don't be shy to tell your family you're a hero. =0) Also, I'd be interested to know what led you to joining the donor registry.

Well, I guess that's about the longest "introductory" email I've ever written. I'll sign off for now, and hope you're well and gratified to know that you've made an immeasurable difference in the life of another human being, not to mention the lives of his family and friends. I hope to hear back from you when you can find a moment.

Thank you again for the gift of life.

Sincerely,

John Philpott

I gave him my address and phone number, as well. 

With my birthday and Abby's show on Saturday, I'll wrap up a pretty great month. I will have received confirmation that I'm still cancer-free and in remission one year post-transplant, seen my older sister get married to an amazing man, arrived at the precipice of a new and exciting job (more info when it becomes official), completed another year of life, and learned the identity of the previously anonymous man who saved my life. 42 is bound to be a great year. =0)

Austin, TX - Part 2

Monday and Tuesday were a lot of fun. I left my hotel in South Austin a little before noon Monday to drive about 30 minutes or so to a restaurant called The Salt Lick in Driftwood, TX. Oh my goodness. The briskett and ribs were amazing. Yasir and Gwen treated us (me, Mom, Dad, and my nephew Jason) to lunch, and it was worth every mile and minute driven to get there. Actually, I would have driven further. So, so good. Here's Gwen, Yasir and I after stuffing ourselves with a bunch of delicious meat...

After saying goodbye to Gwen and Yasir, Mom, Dad, Jason and I drove back up to Austin to check out the George Washington Carver museum. It was OK. The most interesting thing I saw and learned was about the emancipation of slaves in Texas. I had no idea that it took nearly two years before the Emancipation Proclamation (written in September of 1863) was enforced in Texas (June 19, 1865). African-Americans in Texas now celebrate "Juneteenth," which is the celebration of legal racial equality in Texas. Pretty interesting. 

After leaving there, we drove about 15 minutes to the Umlauf Sculpture Garden and Museum. Unfortunately, it's closed on Mondays and Tuesdays. Bummer. So, at this point, we went and parked at the Hyatt Regency hotel, where our 8 p.m. activity was to begin. But, with the heat of the day, and time to spare, we decided to walk up the street to get some ice cream. It was definitely HOT, but my milkshake made the walk in the heat worth it. 

At 8:00, Mom, Dad and I had a bat-viewing river cruise planned. Every spring about 750,000 mexican fruit bats come from Monterey, Mexico in one single night. About 95% of them are pregnant females. While in Austin, they give birth then wait for their babies to be strong enough to go back to Monterey. Every day, the bats sleep under the South Congress Avenue Bridge. Just after sunset, they emerge and take to the skies for the night, to eat about their full weight in mosquitos before returning to the bridge some time between 4 and 5 a.m. We got to watch them emerge from under the bridge, and wow. It was so cool to see these swarms of bats flying along the underside of the bridge, then off above the treetops on the south shore of the river. The boat drivers all have these big red flood lights that they shine up at the underside of the bridge so we can see the bats flying out. It was definitely a very unique experience. I just wish more of the many pictures I took had turned out, but here's the sunset and the best shot I have of the bats.

Today was my day to be alone in Austin. After sleeping in a little, I ate breakfast, got ready and checked out of my hotel. My first stop of the day was the Hope Outdoor Gallery, a great big property with a ton of concrete walls full of graffiti by local artists. Yes, I used the term artist. While there's a lot of junky-looking graffiti, there's a ton of really exceptional stuff. the walls range from about 8 feet to 12 feet tall, and there are four levels of this concrete. One artist I spoke with said there's over 22,000 square feet of concrete wall at this place. I'm telling you, every square inch of wall is covered with paint. It was a really Austin-y thing to see. I don't know if there's anywhere else in the world with a place like this. I took a ton of pictures.

Then I went to Veracruz All Natural, a local purveyor of "trailer food," which is a huge thing in Austin. As you might guess from the name, it's mexican food. Oh my gosh. I got a steak taco, a chicken taco, and a melon agua fresca. All I had on my tacos was the meat with cilantro and onions. They were in fresh-made tortillas and were so, so good. No salsa, cheese, sour cream or anything else was needed. The meat was so delicious! Mmmmmm...if I ever get back to Austin, I'll hit Veracruz again.

Next, I went up to Mount Bonnell, the highest point in Austin at a whopping 775 feet above sea level. =0) To my friends in Utah, this will seem pretty ridiculous. Even Santa Rosa, CA, where I grew up has hills higher than that in the vicinity. But because everything around it (for several miles) is so flat, the view of Austin and the surrouning areas from the top of the hill is pretty cool. While I was up at the top, I spent some time talking with a young couple from the area about Austin, San Francisco and Salt Lake City. The guy had no idea about the graffiti wall I had looked at 45 minutes before, and thought it sounded pretty cool. He also wants to go to San Francisco now, just from my description of The City.

I decided then that I needed to go shopping in the rather ecclectic South Commerce district. Austin's official city slogan is "Keep Austin Weird," so I figured I should get some sort of memorabilia from that kind of city...my kind of city. Of course, as Noelle and I always do when we travel to different places, I had to get a refrigerator magnet. I also got a ball cap with the city's slogan on the front of it for me and a necklace for Noelle.

Finally, I took Lexi's (my nephew Riki's girlfriend) advice to get a burger from Hut's Hamburgers downtown before going to the airport. The burger I had was very good - meat, swiss cheese, bacon, mayo and green chiles. I didn't bother with fries or anything because I had just finished my lunch about 3 hours before and I just wanted to get something good to fill me up so I wouldn't have to buy super expensive airport food in Austin or Phoenix. Then it was off to the airport to check in for my flight and head home. 

I'm really glad that everything I did and every place I went Monday and Tuesday is unique to Austin. That was my goal - to experience as much of the city that I couldn't find or experience anywhere else. I may never get back to Austin, or Texas, for that matter. I wanted to make the most of the couple days I had to experience Austin before coming home. Now I'm home refreshed and relaxed. Hopefully I can keep that state for as long as I can. It was great to spend time with my parents, Gwen, Yasir, Christy and her family for a few days. Most places I went, I didn't need my mask because it was outdoors, or just didn't have a lot of people around. I wasn't being reminded 24/7 of the fact that I'm recovering from leukemia and have a suppressed immune system. Granted, I lathered up with 100-SPF sunscreen and wore my big ugly hat all day Monday and Tuesday while I was outdoors to limit my sun exposure and avoid aggravating my GVH. But getting away from home and the monotony of everything here was great for me.

I'm so blessed to have a wife who recognized (much more than I did) how much I needed this trip. Not just to see Gwen married, but to get away from everything for a while. She's very perceptive and considerate of my needs, even with all she does and all she needs to keep her own batteries charged on a daily basis. I love Noelle so, so much. I could never thank her enough for her extreme goodness to me.

To Heck with the Risks - It's My Sister's Wedding!

My blood counts have been stable for months. My GVH hasn't been as bad over the past week or so. I feel great. So, what did I do? I decided to fly to Austin, TX to see my older sister, Gwen, get married to her best friend, Yasir. Why is that such a big deal? Well...

Airplanes and hotels aren't known for being the most sanitary of places. Think about it... You've been planning a trip to Location X for months. Now, the day before your trip, you fall ill with a cold or flu. Do you cancel your vacation or incredibly important business trip? No. You load up on over-the-counter meds that mask your symptoms and go on your trip. But just because your symptoms are masked doesn't mean you're not breathing germs into the air that can make those around you sick. And for the immunocompromised people sitting around you, that's really not a good thing. Your germs get on the airplane seat, on the tray table in front of you, on the arm rests, on the seat belt, on the handle to and out of the lavatory. Your germs are spread throughout the hotel room, getting on the door knobs and light switches, the faucet handles and alarm clock, the TV and remote control, the phone, the mini-fridge, the microwave, the tables, desk and chairs. Do you really think the flight crew on the plane or the housekeeping staff in your hotel wipe all of that stuff down with Lysol wipes every time the plane or hotel room is vacated? Not on your life. But for me, it is about my life.

Some immunocompromised people I know don't like wearing the filtered mask their doctors have given them in public, even in close quarters with others you don't know and don't know whether they are sick or healthy. Why? I'm not sure. Perhaps it's because they don't want to draw too much attention to themselves. Perhaps it's because the masks aren't terribly comfortable. Maybe they figure "Hey, I'm feeling well. It's not that big of a risk." But the fact is, a "simple" cold or flu bug, RSV, or other illness that you can fight off with a healthy immune system in a matter of a few days can land you in a hospital bed, an ICU bed, or the grave with limited or no immune capabilities. I wear my mask. Anyway...enough of my little rant. Back to the good stuff...

So I flew from Salt Lake City to Phoenix and then on to Austin, Texas late Friday night. At breakfast Saturday morning, I learned just how deep Texans' state pride runs...

Gwen and Yasir were married at noon on Saturday. It was a beautiful service, conducted by one of their dearest friends, Elaine. Yasir was as handsome as always, and Gwen was glowing with happiness, which made her natural beauty all the more breathtaking. The wedding and reception were fun, and I enjoyed being with my parents and my Texas family for the day. Here's are some pictures...

After the reception, my sister Christy (Linda) and her husband, Paul, took me to the airport to pick up my rental car because I had arrived at 2 a.m. and all the car rental places were closed. After that, we all went out to dinner at Abel's, which is a really fun restaurant with GREAT food. My nephew, Riki, treated me to dinner for my upcoming birthday. We had such a great time. Here's a picture of all of us on the patio.

 The group at dinner, clockwise, from front-left: Jason, Dad, Mom, Beth and Derek, Paul, Christy, Aaron, Jeanee, Lexi, Riki (Steven), me, Jordan.

 Fried Pickles, a Texas specialty. Wow. So Good!

Pork chop, garlic mashed potatoes and green beans. Super good. Thanks, Riki!

I'm so glad I made this trip, which, by the way, is a combined Father's Day and birthday (and every other gift-giving occasion for the net five years) gift from Noelle. I love her so much for giving me this opportunity to see my sweet sister married and spend time with family. Most of them came to the family reunion last summer, but I was mostly incoherent during what I've come to call my "Three Weeks of Hell." For those who only recently have begun to follow my blog, you can read the post from last July called "An Unexpected Hiatus" for more info on what that's all about. Anyway, Noelle's holding down the fort on her own for four days while I'm here, and I'm so grateful for the blessing she is in my life.

So, I figured, I'm traveling to Austin, Texas for the first (and perhaps only) time in my life. I may as well experience it a little. I'm staying through tomorrow (Tuesday). Yesterday was Father's Day, so I went to Lexington, a little town (population 1,177) where Christy and Paul live with Jason (Christy's youngest) and Beth (Christy's 2nd of 5 kids) and Beth's two sons, Jordan and Derek. Mom and Dad joined me and Beth and her boys at Beth's branch Sacrament Meeting and then went to Christy and Paul's place for the day. We had a gerat time just hanging out, playing games (it's the Mann Clann, after all), and talking all afternoon and evening. After a gerat dinner and dessert, and about 1/2 an hour "FaceTime-ing" with my kids (I love modern technology), I drove back to my hotel and tossed and turned until I finally fell asleep some time around 3 a.m. It's just hard for me to sleep without Noelle by my side. 17-1/2 years of sleeping next to someone you love deeply will do that to you. =0)

Anyway, today, I'm meeting Gwen, Yasir, Mom, Dad and Christy for lunch at The Salt Lick - a supposedly great BBQ place South-West of Austin, then sight-seeing the rest of today and tomorrow until I have to check in at the airport around 5:00 for my 6:45 flight home. It should be fun. 

Well, that's about it for now. I'll post more in the next few days about today and tomorrow's activities. Until then...