Sunday, September 29, 2013

Remission, Light the Night and Phil the Pott

REMISSION!!!!

What a great word! I am in remission! The results are in from my Day 100 blood tests and bone marrow biopsy. 100% of my bone marrow and stem cells are donor cells (my doctors were hoping to see at least 50%), and there is no sign of cancerous cells found in my marrow or blood! I am so incredibly grateful to my Father in Heaven for answering prayers and granting me this amazing blessing. I also owe a lot to my team of doctors, nurses and aides in LDS Hospital's BMT Unit, as well as all of the scientists, researchers, fundraisers and support staff at organizations like the Multiple Myeloma Research Foundation (MMRF) and the Leukemia and Lymphoma Society (LLS), who are responsible for the medical advances that have made possible what was not possible 10 years ago. The treatments, procedures and medications I have received have saved my life. Am I cured? Well, the doctors are hesitant to call it a cure for a few years, but for all intents and purposes, that's what it potentially amounts to. Can the cancer come back? Yes, but with 100% of my stem cells and marrow being donor cells, it's highly unlikely.

Now, the key is to stay healthy. I still have no immune system. It's like I'm a newborn baby in that respect. Getting a donor's stem cells is kind of like hitting "reset" on the immune system and starting over in life. So, while I'm cancer-free, I'm not completely out of the woods yet. It'll still be about a year (at least) before I can return to work, and about two or three years before my checkups at LDS Hospital's BMT Unit are down to a quarterly schedule. With the cold and flu season upon us, I have to be extremely vigilant about exposure to anyone with a fever, runny nose, cough, sore throat, earache, or any other cold or flu symptom. Catching a cold or flu bug could easily turn into pneumonia and a stay at the hospital, perhaps even ICU. We check our kids' temperatures regularly to ensure they're not exposing me to anything.

OK, everyone. I know there are a lot of people who read this and that I'm not just keeping a personal journal here, even though, that's my primary focus. On Saturday, October 12 (just under 2 weeks away), the Leukemia and Lymphoma Society (LLS) will be hosting the Light the Night Walk at Sugar House Park in Salt Lake City. For those who are not familiar with the Light The Night Walk, here's some basic info about it from the LLS:

The Leukemia & Lymphoma Society’s Light The Night Walk funds treatments that are saving the lives of blood cancer patients (like John Philpott) today. LLS is making cures happen. And it’s all happening now. Not someday, today.
Friends, families and co-workers form fundraising teams and consumers help by donating at retail outlets. These efforts culminate in inspirational, evening walks in nearly two hundred communities each fall across North America.
Participants of all ages are welcome. Fundraising efforts help hundreds of thousands of blood cancer patients. And at the event, you will enjoy a fun, family friendly event, with music, refreshments and entertainment.

I have been blessed tremendously by what the LLS does. I'm raising funds to help others be blessed by the LLS's efforts in the same way I have. On the right side of this page is a link to my fundraising site for the Light The Night Walk. If everyone who reads this would donate just $5 or $10, that would go a long way in helping me and my team make an impact. Of course, the larger the donation, the larger the impact. Thank you in advance to everyone who makes a donation. So far, my "team" (those who are walking with me and raising funds with me) consists only of me, Noelle, our kids, and my brothers, Jeff and David and their families. I would love to have others join us on the walk. If you join the team and raise $100 in donations, you get a t-shirt, lighted balloon and food catered by Texas Roadhouse at the event, and more importantly, the knowledge that you're supporting something that saves lives like my own. Here's something else to consider...if you join the team, your personal donations count towards the $100 you need to raise for your t-shirt and other stuff. Please help. I'd love to have a huge group joining and walking with my team, which I've named Phil the Pott for Leukemia. Let me know if you'd like to participate or if you have any questions. Thanks so much.

My strength and energy continue to improve, as we continue to taper the amount of steroids I'm taking, and as I continue to be as active as my body will let me. I'm focusing my diet on high-protein foods, and trying to rebuild the muscle I've lost. If anyone has any great high-protein recipes to share with me, email them to me (philpott672@gmail.com) or share them with me on Facebook.

Well, that's about it for now. More to come soon.

Friday, September 6, 2013

Nothing Left to Do But Wait - Day 100 Has Come

This evening, we had some fun with pizza, root beer floats, a movie and Dance Party 4, which we picked up from RedBox and the kids want for Christmas. If tonight is any indication, I think they'll get it. They had a blast when I wasn't telling them to be careful about and shelves and everything on them falling onto kids who moved too far towards the wall on the right. I think we need to do something about the set-up in our rumpus room. I've got an idea for how to do it, but I can't move anything around right now because I'm still so weak. I wanted to upload a couple video clips from tonight, but the site is being difficult and isn't letting me. I'm hoping Noelle knows how to do it right and can help me. We had a lot of fun watching the kids shake their booties and laughed quite a bit. We need more laughter in our home.

I've been dealing (as has my family, unfortunately) with some mood issues caused by steroids and a bit of depression. I've begun working with a therapist who says it's natural for me to have mood swings and to suffer from depression and anger issues as my role at home has changed and as I've lost the ability to label myself with words that I've always associated with key aspects of my identity like "healthy" and "breadwinner." She says that those things can weigh heavily on a person and negatively affect self-esteem, self-worth and relationships as the anger and depression impact the ways we communicate with others. I've always had a bit of a temper, but it's gotten worse over the last several months and I've damaged the relationships I need to be able to rely on the most right now. My therapist used to be a social worker on East 8 and she's very familiar with the clinical, emotional and psychological issues and losses that BMT patients go through. I just had my first visit with her this week and I'm hoping weekly visits with her will help me (and my relationships with my family) a lot. 

Yesterday was Day 100, post-transplant, which means it's time for a bone marrow biopsy and other tests to see how my body has responded. I try not to be nervous, but it's hard. There's nothing I can do, which is the most frustrating thing. We've done everything we can do. There are no other treatments, transplants or anything else we can do. If the transplant hasn't worked, we'll see a lot of cancer cells, a lot of my old marrow, and no real progress from where we began last fall, and I'll die. If there's been a partial response, we'll see some sort of progress (a good amount of donor cells, decreased cancer cell counts, etc.), but we won't necessarily know where it's headed, and future tests will have to be done to determine that. We could also see a tremendously positive response, with a very high level of my marrow cells being donor cells, few or no cancerous white blood cells in the marrow or blood stream, and a system that appears headed for a potentially long remission. There may even be some other options as far as what we may see, but I don't even know. I just know that what we find is what we find, and there's nothing we'll be able to do about it from a treatment standpoint. We just run with whatever my body is doing. At least that's my understanding at this point. I'm very hopeful about my prognosis, as I have been from the beginning, but right now, the whole it's-out-of-my-hands thing is very real. I've done everything I could possibly do. There's nothing left for us to do but wait to see where my body is and what comes next. 

Noelle has been a saint and an angel through all of this. She has borne the brunt of everything over the past eleven months...nearly a year since my shoulder injury that started this whole adventure. Noelle's influence in my life and that of the kids can't be overstated. She has dealt with the kids' and my tantrums and moodiness with such a Christ-like attitude and demeanor. She inspires and surprises me, even after more than 16 and a half years of marriage. I worry about her melting down sometimes, but she finds a way to keep it together. I wonder if she ponders or reflects on the lyrics to one of my favorite hymns, as I do at times, to hold on when the rope gets slippery:

I need thee every hour, most gracious Lord; 
No tender voice like thine can peace afford.

I need thee every hour; stay thou nearby; 
Temptations lose their power when thou art nigh.

I need thee every hour, in joy or pain;
Come quickly and abide, or life is vain.

I need thee every hour; teach me thy will,
And thy rich promises in me fulfill.

I need thee every hour, most Holy One;
Oh make me thine indeed, thou blessed Son.

I need thee, Oh, I need thee;
Every hour I need thee.
Oh bless me now, my Savior; 
I come to thee.

I'm sure I'll have that hymn in my mind on Monday, as I'm going through my biopsy and other tests.