"Day +365"

I wrote this on Thursday. I'm not sure why I never posted it...

365 days ago this morning, my body was completely devoid of bone marrow. With my own marrow, I would have died. With marrow donated to me by an anonymous 29-year old somewhere in the world, I had a chance to live. On Wednesday, May 29, 2013, also known as "Day +0," my nurse and two representatives of the American Red Cross delivered my donor's stem cells to my room, hooked them up to my IV, and thus began my new lease on life. Stem cells are the core material of bone marrow. Bone marrow is what creates blood. My donor's stem cells floated around in my blood stream for a few days, looking for a new home. They ultimately found their way to my hollowed-out bones and set up shop there, creating Marrow that was ultimately create new blood for me. Just under two weeks after my transplant my blood counts started coming up, and I was on my way back. The O- blood that I was born with, and which had since become cancerous, was gone and my donor's healthy A- blood began flowing through my body. It's an amazing blessing, my gratitude for which I will never be able to adequately express. Every day I live is thanks to a selfless person somewhere in the world who decided it was important to help save a stranger's life. Whoever you are, wherever you are, you are my hero. 

Coming Up On One Year Post-Transplant...

I can't believe it. In just 12 days, I'll be celebrating my first "transplantiversary" (transplant anniversary). In some ways this past year has flown by, and in other ways, it's dragged on and on and on. But with my first transplantiversary come several key events...

First, the milestone itself. Plasma Cell Leukemia is a very aggressive form of Multiple Myeloma with a very poor prognosis. Transplants don't always work. Many PCL patients never even make it to transplant, let alone through it. Hitting one year post-transplant is a big deal. I get misty-eyed just thinking about all of the miracles that have occurred to get me to this point. Just to enumerate the various key blessings/miracles that have gotten me here...

• My shoulder injury that started it all.
• How quickly I was able to recover from two bouts of pneumonia, only being hospitalized for two days for the first bout, and never for the second.
• My company's willingness to allow me to miss many hours of work from October 2012 - February 2013 so I could go in for chemotherapy and hospital stays, and get the rest I needed as my body was going through some rough stuff.
• How well my body responded to my autologous transplant on February 22, 2013, which prepared me well for my next one.
• The fact that we were able to find a perfect 10-out-of-10 donor match for my allogeneic transplant who was willing to donate and to work with us to coordinate a good date for his donation and my transplant. I owe my life to him.
• The amazing science behind bone marrow/stem cell transplants. Without the advances in chemotherapy, transplant science and technology over the past 10-20 years, I would not be alive today.
• My medical team at LDS Hospital's Blood and Marrow Transplant (BMT) unit, who worked so hard to map out a plan for the treatment of my rare cancer. Many of them have become great friends to me.
• The interaction of my donor's cells with my body. Even though I've gotten some mild GVHD, my donor's cells have also eradicated the cancerous cells from my body. Any amount of GVHD is worth that. 
• My recovery from failing kidneys and liver last summer. The doctors performed a litany of tests on me and still couldn't figure out why my body couldn't/wouldn't filter out my medications. I was very close to going into the Intensive Care Unit and going on dialysis. Then, miraculously, I began to improve after 12 days of going downhill. Many prayers were answered.
• The fact that for just over 12 months, I had a peripheral or central line in me and never got an infection from it. That's very, very rare.

The second big deal about reaching my transplantiversary is that I get to go through a similar "work-up" to what we did at the 100 day mark. I'll have more blood tests than usual, a full-body bone survey, a urinalysis and a bone marrow biopsy to see if I'm still in full remission or not. That's a bit of a nerve wracking thing. I'm pretty sure we'll be doing that on the 27th, two days before I hit one year. I'll probably get my biopsy results on the 29th, my actual transplantiversary. Fun.

The third thing is that I'll be hosting my now-annual bone marrow donor drive on May 31st. I plan to have it on or around my transplantiversary every year for the rest of my life. It's a kind of re-birthday present I'm giving back to the system that found my donor for me. My hope is to add 100 people a year to the registry. I've also become a Volunteer Ambassador for the National Marrow Donor Program/BeTheMatch.org. That means I'm qualified to run my own drives and collect financial donations to the program to help pay for the process of adding people to the registry. It costs the registry about $100 to add just one potential donor. Here's what I need for my donor drive...

• DONORS!!! I need any and everyone I know between 18 and 44 who's not on the registry to look into joining. Even with 11.5 million people on the registry, some patients still hear their doctors say, "I'm sorry, but there's no match for you." Those words are like a death sentence for patients with various forms of leukemia, lymphoma and other blood disorders. I want to do what I can to ensure as few people as possible ever have to hear those awful words. You can go to http://bethematch.org/Transplant-Basics/ to learn more about how transplants and marrow donations work, and other information you may want to know. 
• VOLUNTEERS!!! I can't run the drive by myself. I need to have a few others there with me at all times to ensure that prospective donors are met at the door, given the necessary information and forms, asked the appropriate medical questions, and assisted with the collection of their cheek swab. There's no blood test or anything, so don't worry if that kind of stuff makes you queasy. =0)
• FINANCIAL CONTRIBUTORS!!! Like I said, it costs about $100 to add someone to the registry. The Be The Match Registry doesn't require the prospective donors to contribute any of that money, but it has to come from somewhere. Both businesses and individuals can get a tax write-off for their contributions, as well as a big hug and "thank you" from yours truly. Any amount contributed is needed and appreciated. If any business owners or others who read this are willing/able to contribute, please let me know. You can come to the drive to make your contributions or donate online at: http://www.bethematchfoundation.org/goto/philpott. There are also opportunities for retail businesses to do a pin-up contributions campaign, where at the register, customers are asked if they'd like to help blood cancer patients be matched with life-saving marrow donors for only $1. They contribute a dollar and get a little pin up card with their name on it to post in a prominent place in the store. The point is, any way you can contribute financially helps provide people like me with donors, and provide donors the opportunity to save a life at no cost to them.
• BAKERS AND GOODIE MAKERS!!! One of my nurses at the BMT unit is going to bring some cupcakes or something for us to sell at the drive, and anyone else who would like to bring something like that is welcome. That's an easy way to help raise funds, as well. Even kids can feel like they're a part of finding donors for patients like me.
• PEOPLE TO COME BUY GOODIES!!! They're goodies. They're being sold for a good cause. Need I say more? =0)

If you'd like a flyer for the drive, just shoot me an email (philpott672@gmail.com) and I'll send one to you. Here's a .jpg image of the flyer, though I don't know how good the quality of it will be if you try to print it out. The .pdf is perfect for printing and posting on your workplace bulletin boards (hint, hint!).

The last really exciting thing about hitting one year post-transplant is that I get to contact the Be The Match Registry and request the contact information of my donor. If he is open to having contact and the confidentiality guidelines/laws of his country allow it, I can know who he is and where he lives, and have a way to reach out to him and try to arrange for us to meet. I'd like nothing more than to give him a big hug and thank him for saving my life. 

On a side note, my GVHD is back - still on the skin. This time it's gone after my face, back and legs more than any other part of the body. It's livable. No need or desire to really complain. I'm alive, after all. What's a little itchiness and dry or blotchy skin compared to the gift of life? Nothing at all.

I guess the last thing I should mention is that I've applied for a job. It's with the Leukemia and Lymphoma Society, working as an assistant in their School and Youth program. The office is only about 5-10 minutes from home, and it's only 20-30 hours a week, so it's ideal in that regard. The best thing about it is that I'd be working for the organization that's responsible for funding so much of the research that has led to the medical advances that have saved my life. They also provide grants to leukemia patients like me to help offset the costs of prescriptions, co-pays and medical insurance. It'd be awesome to work for them doing something I'm passionate about. I'm done with traditional business-to-business sales, but my sales and public speaking background can help me be a great member of the LLS team. Here's hoping my interviews go well...

That's it for now. Let me know if and how you can help with my marrow donor drive.