Accessing the Grace of Christ in Our Daily Lives

I spoke in Sacrament Meeting this morning for the first time in nearly two years. Noelle and I spoke in July or August 2012, shortly after we moved into our new ward. This time, I was asked to speak on the topic of grace. I know it makes for a very long blog post, but the full text of my talk is below. I include it in my blog because it deals a lot with the challenges I've had over the past 20 1/2 months, and how the grace of my Savior has been so incredibly important in sustaining, strengthening, comforting and enabling me through it all...

In Abraham 3:25, we read of a conversation between God and Christ before sending us all to Earth. God said, “And we will prove them herewith, to see if they will do all things whatsoever the Lord their God shall command them.” In this verse, the word “prove” means to try or test. God did not say “we will see if they will do all things whatsoever the Lord their God shall command them when life is easy.” This life is hard. It was meant to be so. Otherwise it wouldn’t be much of a test. Lehi instructed his sons to be ready for challenges when he told them “it must needs be that there is an opposition in all things” (2 Nephi 2:11, emphasis added). But there is a purpose in the opposition we face. Lehi continued: “if it were not so…righteousness could not be brought to pass, …neither holiness, …neither good” (2 Nephi 2:11). Lehi is telling us that without the opposition that comes to us in our lives, we would have no ability to develop the level of righteousness, holiness and goodness we need to be prepared to return to the presence of God and enjoy the full blessings that come to His faithful children.

The apostle Paul was a man who knew a bit about opposition. He was heavily involved in the opposition to the early Church and its members throughout the Holy Lands. Following his conversion, he travelled thousands of miles throughout Palestine, western Asia, and Europe, to repair the damage he had done and to bring others to Christ. He was imprisoned, shipwrecked and suffered many further oppressions for the sake of the Gospel. Through all of the opposition he faced on the Lord’s side of things, his faith was tested and his testimony of the resurrected Savior was opposed at every turn. How did he go on? Where did he find the strength to do all that he did? In Philippians 4:13, Paul attests: “I can do all things through Christ which strengtheneth me.” How is it that Jesus Christ strengthened him in his times of darkness and light, scarcity and plenty, turmoil and peace? It was through the strengthening, comforting and enabling power of the Savior that we call grace.

On Saturday, December 1, 2012, my family and I had a singular experience. Less than two months after my diagnosis with Plasma Cell Leukemia, we received a personal visit from Elder David A. Bednar of the Quorum of the Twelve Apostles while he was visiting our stake and reorganizing the Stake Presidency. He took time out of his very busy day to talk with us and to teach us.

After seating himself humbly on the piano bench, which was easily the least comfortable seat in the room, Elder Bednar looked at me and said simply, “How goes the battle.” I briefly explained to him how things were going and what lay ahead of us. He then asked, “As you’ve been going through this, what have you seen in yourself that has surprised you.” I spoke of how simple faith can also be profound, and how I’ve determined to allow the Lord to refine and prepare me for whatever lies next in my life. Elder Bednar then asked Noelle “What has surprised you about yourself through all of this?” Noelle talked about the strength she’s felt in being able to handle everything. Then Elder Bednar talked about where that strength comes from. He said that too often in the Church, we focus on how the Atonement “scrubs us clean,” as if those who have already been cleaned have no way to put the Atonement to use in their daily lives. He said that we don’t speak enough about the strength and comfort that come through the Atonement. “That is what grace is,” he said.

The Bible Dictionary defines grace as “divine means of help or strength, given through the bounteous mercy and love of Jesus Christ.” It goes on to say, “It is through the grace of the Lord Jesus, made possible by His atoning sacrifice, …that individuals, through faith in the Atonement of Jesus Christ and repentance of their sins, receive strength and assistance to do good works that they otherwise would not be able to maintain if left to their own means. This grace is an enabling power that allows men and women to lay hold on eternal life and exaltation after they have expended their own best efforts” (p. 697).

In his first General Conference address as a member of the Quorum of the Twelve, Elder Bednar talked about grace as an additive to our weak but “best efforts” to help us accomplish the good we need to do in life. He highlighted the Book of Mormon prophet Jacob’s testimony that “the Lord God showeth us our weakness that we may know that it is by his grace, and his great condescensions unto the children of men, that we have power to do these things” (Jacob 4:7). Elder Bednar continues: “…the enabling and strengthening aspect of the Atonement helps us to see and to do and to become good in ways that we could never recognize or accomplish with our limited mortal capacity.”

For what “good works” do we require the grace of Christ to accomplish? Every single one. When is His grace available to us? Gratefully, always. And when do we need Christ’s grace? The answer is the same: always. We all need grace in our daily lives. But how can we arrive at the point that the Lord will intervene in our behalf with His grace?

In General Conference in April 1993, Elder Gene R. Cook explained “five principles that may help us obtain that divine intervention” (Receiving Divine Assistance through the Grace of the Lord). They are faith, repentance, humility, doing all in our power, and keeping the commandments. Is any one of us surprised that those would be the conditions for receiving this supernal gift from the Savior?

Moroni tells us that “Christ hath said: If ye will have faith in me ye shall have power to do whatsoever thing is expedient in me” (Moroni 7:33). Whose power will we have by our faith? The Lord’s power. In his epistle to the Romans, Paul says that “being justified by faith, we have peace with God through our Lord Jesus Christ:

“By whom also we have access by faith into this grace” (Rom. 5:1-2).

Repentance is the second condition by which we access grace. In the Book of Helaman, we read: “Therefore, blessed are they who will repent. …

“And may God grant … that men might be brought unto repentance and good works, that they might be restored unto grace for grace, according to their works” (Hel. 12:23–24). Elder Cook explains that “a repentant heart and good works are the very conditions required to have grace restored to us” when that power has been lost.

Humility is also a key. “God resisteth the proud, but giveth grace unto the humble” (James 4:6). We must be humble enough to accept that we cannot do all that we need to do in this life without the assistance of He who is “mighty to save” (Alma 34:18).

We can’t expect the Lord to do everything for us, though. Nephi stated clearly that “by grace…we are saved, after all we can do” (2 Ne 25:23). Elder Cook adds that “unless one has done all in his own power, he cannot expect the grace of God to be manifest. …Once one has given all he can, then the Lord, through His grace, may assist him.” “Therefore, …let us cheerfully do all things that lie in our power; and then may we stand still, with the utmost assurance, to see the salvation of God, and for his arm to be revealed” (D&C 123:17).

Finally, we don’t have to be perfect to access grace, but we need to do our very best to keep the commandments. The Savior instructed, “If you keep my commandments you shall receive of [God’s] fullness …; therefore, …you shall receive grace for grace” (D&C 93:20). When we show the Lord our faith, repentance, humility, and willingness to do all we can to be obedient, the windows of Heaven are opened, and grace pours down upon us.

All home and visiting teachers who have ever had to “dig deep” to fulfill their assignment and keep their commitment to the Lord, their priesthood leaders and those they serve have accessed the grace of the Lord in doing His work. Every bishop who has had to rely upon revelation to know how best to counsel a ward member has benefited from this “enabling power.” Every mother who has knelt in prayer at the side of a sick child to seek peace of mind for herself and healing for one she loves has been blessed by the comforting power of Christ’s grace. This grace has been extended to all who have sought comfort when their hearts are empty and hurting as loved ones pass from this life into the next. All of us who have called upon the mercy and kindness of a forgiving Father in Heaven to heal our hearts and eliminate one more shade of “the natural man” in our lives have only received forgiveness through the grace made possible through the Atonement of Jesus. In short, every one of us who strives along the “strait and narrow” path that leads to eternal life needs the grace of Jesus Christ to strengthen our hands, steady our feet, and focus our vision more clearly on the “tree of life, whose fruit is most precious and most desirable above all other fruits; yea, and…the greatest of all the gifts of God” (1 Ne. 15:36).

The words of an old spiritual attest to the need for grace on an ongoing basis:

Through many dangers, toils and snares
I have already come;
'Tis Grace that brought me safe thus far
and Grace will lead me home. (Amazing Grace, John Newton)

Elder Bednar asks if we can “sense the grace and strengthening power of Christ in the testimony of Ammon?” Ammon says, “Yea, I know that I am nothing; as to my strength I am weak; therefore I will not boast of myself, but I will boast of my God, for in his strength I can do all things…for which [I] will praise his name forever” (Alma 26:12). Truly, … in the strength of the Lord we can do and endure and overcome all things.” Brothers and sisters, I testify that I have learned that for myself.

I’m incredibly grateful to be able to say that going through four rounds of chemotherapy was not a huge ordeal for me. Sure, I lost my strength and stamina, and food didn’t taste good to me, but I wasn’t anywhere near as sick as I had anticipated being. Then in February of last year I went through the first of two stem cell transplants. The three weeks I spent in the hospital were like walking “through the valley of the shadow of death.” In addition to needing regular transfusions of red blood cells, plasma and platelets, and feeling incredibly weak and tired all the time, I also developed typhlitis, an infection in my gut that made it impossible to eat or digest anything.

While in the hospital recovering from my second transplant just three months later, I developed Graft vs. Host Disease, giving me sores in my mouth and throat that made swallowing anything a burden. The pain was so intense that I needed a pain pump to administer to my own relief.

Nine days after being released from the hospital after my second transplant, I was back in a hospital bed with a liver and kidneys that were failing. My medicines weren’t being filtered out of my body properly and ultimately became toxins to my body. My brain activity dropped to about half of normal and I lost my abilities to do most of the very simple things we all take for granted every day like shifting my own body in bed, bathing, eating and communicating effectively. At times, I would have complete sentences going through my head as I wanted to participate in conversations between Noelle, my doctors and nurses, and others, but only grunts and groans would come out of my mouth. I remember wondering if I would ever come back to normal, and why the Lord would allow me to suffer as I was. As my liver and kidneys slowly began working again, I was able to speak and eat a little, but needed help walking. For several days I worked with the hospital’s physical therapists, having to walk with a walker. On the first day with the walker, I couldn’t even go 10 feet without walking my therapist into the wall. Gradually, my ability to walk, talk and eat came back to me, and I was able to return home to continue my recovery.

For the next couple months, everything I did was laborious. Noelle and I had to move to the ground floor of our home because I was so weak that it was unsafe for me to climb the stairs to our bedroom. I shuffled my feet everywhere I went. If I tripped, I couldn’t catch myself without falling to the ground with a heavy thud. When I was on the ground, I needed to crawl to a bed or a stair to help myself get up, or have someone pick me up. I was 41, but felt like I was 101. Being bald didn’t help me feel any younger, either. =0)

Alma tells us that Christ suffered as deeply as he did in Gethsemane and on the cross “that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infirmities” (Alma 7:12). Elder Jeffrey R. Holland has explained that “to succor means ‘to run to’,” and “that Christ will run to us, and is running even now, if we will but receive the extended arm of his mercy” (“Teaching, Preaching, Healing,” Ensign, Jan. 2003).

Much has been said about the value one could derive from walking in another man’s shoes. Unfortunately, cancer is something I’ve found that is a singular experience for every patient, even if the kind of cancer they have and the treatment regimen they go through is identical to that of another. Every patient’s body experiences those things in their own unique way. Though I had the assistance and sympathy of many who love me, and the relative empathy of other leukemia patients I had met, I was alone in my particular experience. In his visit to our home several months before, Elder Bednar had expressed his conviction that “when we feel the most alone is when the Savior draws nearest to us.” As awful as I felt physically through all of these health issues, I felt the Savior draw near to me every day through the grace He offered me. His promise that as we “draw near unto [Him]” that “[He] will draw near unto [us]” (D&C 88:63) became evident as I called upon Him in frequent prayer. God’s words to Joseph Smith echoed through my mind: “My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; And then, if thou endure it well, God shall exalt thee on high” (D&C 121:7-8).

Over the course of the last 20 ½ months since a shoulder injury led to MRIs, blood tests and, ultimately, discussions about blood, bone marrow and leukemia, it’s been interesting to see and feel the infinitely merciful and gracious hand of the Lord in my life. Many times, I’ve seen it in the good things that you, our fellow ward members, have done for my family when moved upon by the Holy Spirit. Many times, I’ve witnessed the manifestation of Christ’s grace when doctors have no medical explanation for the illness or the subsequent healing. I’ve felt the comforting power of His grace in the peace He’s given me through the Holy Ghost in times of sadness, loneliness and illness. I’ve seen His grace in the strength He’s given Noelle to suffer alongside me with courage and with the conviction that it will all turn out alright.

Brothers and sisters, I testify that our Savior lives. In the words of a favorite hymn:

He lives to comfort me when faint.

He lives to hear my soul’s complaint.

He lives to silence all my fears.

He lives to wipe away my tears.

He lives to calm my troubled heart.

He lives all blessings to impart. (“I Know That My Redeemer Lives,” Hymns, 136)

It is through the grace of Christ, made possible through His infinite, merciful and loving Atonement for us all that these blessings are made available to us. I know that He is always there and that His grace is always available to us to strengthen us, comfort us, and empower us in all we do. I have felt this power. I testify that “if [we] shall deny [ourselves] of all ungodliness, and love God with all [our] might, mind and strength, then is his grace sufficient for [us], that by his grace [we] may be perfect in Christ” (Moro. 10:32). I pray that we might always choose to access grace by doing all we can to live in accordance with our covenants and always being engaged in good works. May we then live in constant gratitude for the “enabling power” of grace in our daily lives. In the name of Jesus Christ, amen.

One Year...And Counting

On Thursday, May 29, 2014, I celebrated one of the most significant days of my life. It was the first anniversary of the stem cell (bone marrow) transplant that saved my life, or what I like to call my "TRANSPLANTIVERSARY."

The "celebration" began on Tuesday, with my 1-year work-up appointment at LDS Hospital. The appointment consisted of a clinic visit with a Zometa (bone strengthener) infusion, a GVH assessment, a bone marrow biopsy, a chest x-ray, a full body skeletal survey, a CT scan, and a pulmonary function test. Also, because I had tested positive the two Tuesdays before for Epstein-Barr virus, they wanted me to receive an infusion of Rituxin. With everything else going on, we never even got to the pulmonary test. I showed up at the hospital at 8:30 in the morning, and didn't leave until shortly after 10 o'clock at night. Of course, the purpose behind all of this was to assess how my body is doing, and whether or not I'm still cancer-free.

Well, the results are in, and I'm extremely happy to report that I am 100% cancer-free, and my marrow is 100% donor marrow. That last part is especially significant because as long as my marrow is my donor's marrow, it can't produce the cancer. My Plasma Cell Leukemia came about because my DNA "broke" and started telling my marrow to produce faulty, cancerous white blood cells. Well, gratefully, my donor's marrow is not controlled by my DNA. That's a good thing. My bones are still as porous as they have been since my diagnosis, and they will never regenerate the hard, outer bone tissue that has been destroyed by my multiple myeloma. My lymph nodes, heart, lungs, and other internal organs are all doing well. On June 10, Noelle and I will meet with Dr. Mitchell, and discuss all of the results and findings from all of the tests on Tuesday.

On Thursday, our family celebrated my transplantiversary with donuts and orange juice in the morning. I also went to lunch with the director of the Leukemia and Lymphoma Society's Light the Night Walk to discuss fund raising ideas and plans for my team for this October's walk. The LLS is the largest funding source for leukemia and lymphoma research and is partially responsible for the medical advances that have made such a difference in saving my life. They've also helped my family through a copay assistance program that has helped us aford all of my prescriptions. I just want to give back. I plan to raise over $3,000 for leukemia and lymphoma research and patient support in the months leading up to the walk. If anyone reading this wants to be a part of my team, helping me with the "FUN-raising" activities I'll be doing (like a dinner and dessert auction, BUNCO nights, an LLS Spirit Night at Chick-Fil-A, and more...), or walk with me and my family at the Light the Night Walk (Saturday, October 13), please let me know.

On Saturday, I held my annual Be The Match donor drive. It was a success, as the drive coordinator for the Western Region tells me that anything over 20 registrants is a success. We registered 21 people on Saturday, with several others committed to join in the coming days. They just couldn't make it to the drive itself. We also raised $635 with individual contributions ranging from spare change to $100. Every dollar counts, as it costs Be The Match $100 to process each registration. Fundraising continues on an ongoing basis. If anyone wants to make a contribution, the link to do so is: http://www.bethematchfoundation.org/goto/philpott.

My Graft vs. Host Disease (GVH or GVHD) continues on my skin. Interestingly enough, it's also causing my hair to fall out. I have a big bald spot in the middle of my chest, the hair all over my body is thinning, including my eyebrows and the hair on top of my head. It's funny. I never lost my eyebrows when the rest of the hair on my body was lost with chemo and transplants, and now, more than a year after my last chemo dose, I appear to be losing them. It'll be interesting to find out if I lose all the hair on my head, or if it just thins. 

And finally, I didn't get the part-time job I interviewed for with the LLS. Oh well. If it was meant to be it would have happened. 

More later...

"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.

GVHD Update and Some Good News

It's only been a few days, but I wanted to post an update on how things are going with my GVHD. It seems to be going away, or at least subsiding quite a bit. My appointment at the BMT clinic went well. I was given a new prescription for that cream I talked about in my last post...only this time it was for a 1-pound vat of the stuff. My skin is nowhere near as rashy or dry as it was, and I don't itch quite as regularly. Then again, I was itching 24/7, so any improvement in that regard is a good one. I'm hoping that with the continued use of the cream it'll go away completely so I don't have to bump up my Cyclosporine again or go back on steroids. That would be a huge bummer because it would delay further my re-entry into society...able to work, able to attend church, able to go to public places without my mask, etc.

Good news...My friend Rebecca is finally out of the hospital. She had a really rough go of things following her second transplant which was necessitated by her relapse. I discussed her relapse in a post on February 15th called "When Science Isn't Enough." When I went into the clinic on Friday, she and her mom were there in the infusion room while Rebecca was getting a dose of Vidaza. She looks tired and worn down still, but so much better than she looked a week and a half before when we stopped by to see her as an inpatient at my previous clinic visit. It did my heart good to know that she was out of the hospital and able to sleep in her own bed...and not be hooked up to a pole constantly. That, my friends is one of the most frustrating things about being an inpatient. You've got to take that blasted pole with you everywhere you go...on your walks around the unit, to the bathroom, to the shower. Ugh. Anyway, I'm thrilled that she's out of the hospital. Recovery goes so much faster out of the hospital than in.

I get to see Mike Myatt (the kingpin of "the guys") this afternoon and Friday evening, as he's traveling through Salt Lake City between Sacramento and Boston. He has some business stuff going on in Boston this week and was able to get flights that had layovers here in SLC. It's always good to see him.

That's it for now. One of my shortest posts ever is in the books...

GVHD and Some Candor About Loss, Grief and Therapy

Well, it's here...again. I've got Graft vs. Host Disease. So fun. Actually, compared to how it was just after my transplant last spring, this really isn't that awful. My allogeneic (donor) transplant was on May 29th last year. While recovering in the hospital over the next couple weeks, I got some GVHD throughout my GI tract...mouth and throat sores that made it very hard to eat and swallow and necessitated a pain pump, and issues with my gut and bowels I won't describe in any detail. =0)

Now I've got GVH of the skin. My donor's cells are viewing my skin system as something foreign - remember that no one told my donor's cells they were "moving" - so they're attacking it. I have bumpy, rashy skin all over my body...well...not really all over. The soles of my feet, the palms of my hands, my...um..."stuff," and the majority of my face have been spared...to this point, at least. There are a couple splotches that look like dry, raised little lesions on my legs, the back of my left hand, and one on my bum by my waist. Around my eyebrows, eyelids and around my hairline, the skin is dry and flaky.

At my clinic visit last week Tuesday, the GVH wasn't quite as bad as it is now. A cream-based medicine was prescribed for me, but I'm just about out and my insurance won't allow a refill until the end of this week. Ugh. I can't put the cream on my face, so I just have to live with it there, I guess. There's a pill I can take for the GVH, but my doctor wanted to just stick with the cream and bump up my Cyclosporine (immuno-suppressant) and see if the symptoms subsided. Bummer. Now, there's the possibility that I'll have to go back on steroids...my favorite. Remember how grotesquely swollen my head and body got last summer and fall? Yeah, that was the steroids' wonderful work. I'm really NOT excited about that prospect. That'll just delay my ability to re-enter society as a whole even longer. Once you're on steroids, you have to taper them gradually. The tapering process feels like it takes forever, and the steroids also sap my energy. I really hope they can find another way to manage this GVH. I've scheduled a clinic visit for Friday to reevaluate my GVH and determine what we're going to do.

The GVH really doesn't hamper my daily activities...it just makes me itch a lot right now. It can get a lot worse, as I understand. The skin can thicken and get really tight and inflexible. At every clinic visit since my transplant, I've been asked to put my hands palm-to-palm in front of my chest with my fingers pointing up like I'm praying. They always look at how flexed my wrists can go to see if I've been losing any flexibility. I hope it never gets so bad that walking, cooking, typing, showering and other activities become terribly difficult.

Hmmm... Let's see... What else has been going on?

Sarah, the therapist I've been seeing since last September for mood/temper/grief issues is moving to Connecticut with her husband and son for a job transfer for her husband. I had my last visit with her a couple weeks ago. Sarah's been so great for me. Gratefully, she's referred me to a colleague of hers named Kathy. I've had a couple visits with her now, and it looks like that will be a good fit, too. The amount of grieving I was going through last summer had begun to become oppressive and I was trying to keep it all bottled up and stay strong. I wasn't succeeding. My mood spiraled downward and my temper got a little hot. You see, there's a lot of loss you go through with leukemia and stem cell transplants and such. Let me just innumerate some of the key losses I've experienced, either for a while or on an on-going basis...

I lost my health. Though I've never been svelte and muscular - what might fit the classic definition of being "fit" - I've always enjoyed pretty solid health. Several years ago, when working five consecutive stressful weeks in Hayward, CA, one day I thought I was having a heart attack and was rushed to the Kaiser Emergency Room. After a litany of tests, the ER doc came in and said, "Mr. Philpott, we've checked everything. You're the healthiest 'sick person' I've ever seen. My prescription: some Tums and a lot less stress." Well, with the cancer came chemotherapy, which wasn't really awful for me (thankfully), but did sap my energy and strength a bit. Then came my transplants, my "three weeks of hell" last June and July, and my subsequent loss of virtually all strength, energy and semblance of health. I felt like death just barely warmed over almost all the time.

I lost the freedom to make concrete plans for the future. When you're diagnosed with cancer, plans kind of go out the window...at least for a while. The reality of that all set in and slapped me in the face right away when my test results came in, changing my working diagnosis of ALL to PCL, receiving a call from LDS Hospital to schedule me for admittance to begin my chemo, being told I'd be there for about 6 weeks starting that day, then within a couple days of admittance being told it'd only be about a week, being released then admitted again with pneumonia less than a week later and only two days before my daughter's baptism. Yikes! If that whirlwind didn't teach me to not fill my calendar with anything that wasn't related to my cancer and its treatments for a while, I don't know what would have. Everything became about "when's my next chemo appointment," or "when's my next test," or "when do I have to take more blasted pills?" With my transplants, planning anything became even more difficult. I didn't even know how long I'd be in the hospital. I haven't even mentioned long-term plans. There was a pretty consistent fear related to all of the "what-ifs" that crept in. What if I don't make it through transplant? What if the transplant doesn't work? When I was in the hospital with failing kidneys and liver and unable to communicate with anyone, I wondered, what if I'm a vegetable the rest of my life? With those kinds of negative "what-ifs" running through my brain, I had a difficult time planning to do anything or looking forward to anything that was very far down the road. Getting back to work someday, seeing my kids graduate high school and college, going on missions, getting married, having children of their own...sometimes it was nearly impossible for me to imagine actually being around for those things. I've always been a dreamer. I've always loved looking ahead to things. The excitement and anticipation have always been about as much fun as the actual thing I'm looking forward to. Having that taken away was devastating.

I lost my job. February 14, 2013 was the last day I worked my day job. I've been taught all my life that one of my primary roles is to be a provider for my family. I've always worked hard to do so, and losing the opportunity to even try was terribly frustrating. Losing my income was tough, too. We went seven months after leaving my job before my first Social Security Disability payment finally came in, and I felt like I was failing my family. I knew it wasn't my fault that the cancer had taken away my ability to fulfill my role as provider, but it's hard to look at the bills coming in every month and not feel like it's your fault you have to struggle so hard to pay them.

I lost my temper a lot more regularly. With the frustration and anger about all of the various losses I was experiencing, coupled with the steroids I was taking, my patience always seemed to run paper-thin. I found myself spending a ton of time apologizing to Noelle and the kids for losing it so often. I love my family. Anyone who knows me well knows how devoted to them I am. I just struggled with reflecting my love and devotion to them in my words and actions.

I lost my ability to do a lot of things around the house. Because my immune system is so compromised, I can't be around anything dusty or any heavy-duty cleaning agents. I can't vacuum, dust, or mow the lawn. I can't clean the bathroom. I can't cut my boys' hair. I enjoy cooking, and wanted to do it a lot for my family seeing as I was home all the time, but just didn't have the energy to be in the kitchen and on my feet all day or even for just a couple hours. It's hard to want to help with all the time you have, but be denied the opportunity, either by your doctors or your body. Which leads me to the next thing...

I lost a lot of my self-worth. It's hard to not feel kind of worthless to those around you when they spend so much time and energy serving you and doing things for you and others you feel like you should be doing, and you don't feel like you can give anything of yourself back to them. I struggled with feelings that if I weren't around, life would be a lot more pleasant for everyone I care about. I felt like I contributed nothing of value to my family, my church, my community, or my relationships with others while draining them of all of their time, talents, resources and energy. That's really hard for someone who has always needed and derived a great deal of satisfaction from a sense of belonging...being a contributing and valued member of a family, a church congregation, a group of friends, etc.

I lost my ability to go to church with my family every Sunday. Members of the Church of Jesus Christ of Latter-day Saints (aka the Mormon Church) spend at least three hours every Sunday in regular church meetings...not including choir practice or any other special meetings. Some people outside the Church suggest that's excessive, but I've always enjoyed it. There's a great deal one learns when they attend three solid hours of sharing thoughts, feelings and testimonies of Jesus Christ and His gospel with others. This weekly tradition, along with personal and family scripture study and prayer, has helped me to develop the faith that has been my foundation through the struggles of the last 19 months. The learning and development of faith is one thing. The sense of fellowship and the relationships one develops is also incredibly important. My family moved to our new home, and thereby changed our ward (or congregation), just three months before my diagnosis. That's just not enough time to really get to know many people and become immersed in the social aspect of the Church. Our ward has been wonderfully supportive through our cancer journey, but it's hard - really hard - for me to not know many of the people with whom my family attends church and to not feel connected to my "ward family."

I lost my looks. I'm not vain, but when I looked in the mirror following transplant, hairless and weighing in at a scant 170 pounds, I didn't see myself. I saw my father just before his death from cancer in 2006. When I went on steroids, and my body ballooned from 170 pounds to nearly 250 pounds in just a couple months, I didn't look much like myself, either. My skin was stretched to the limit and I have the stretch marks to prove it. It's not that I wanted to look movie-star handsome; I just wanted to look like myself.

Anyway, that's a lot to lose. During one clinic visit in late August or early September of last year, I ended up opening up to my PA about the stresses and emotional problems I was having. I finally owned up to the fact that I needed some help dealing with it all. Gratefully, I was told that this issue is very, very common among BMT patients - and I'd imagine all or most cancer patients. That helped me feel better. I was given an anti-depressant medication called Effexor (sp?), and began seeing Sarah. Change didn't dome right away, but gradually things have gotten better - much better. Do I still lose my temper? Yes, but nowhere near as often as I used to. Do I still get down sometimes, grieving for the things I've lost? Yes, but I have some tools to help me get through it now.  I'm so incredibly grateful for the therapy I've been through and will continue to go through and for the patience of my wife and children as I work on me.

I guess the last thing I should mention is that I've decided to write a book. I'm still working out the kinks when it comes to the book's scope and focus. Just in making some early notes, I've realized that this thing could really get out of hand when it comes to the quantity of material/pages. I hope to keep the size down to a size that's not intimidating to anyone, but still have enough substance to be of worth to its target audience. Now...whether anyone in the target audience would ever chose to buy or read it, let alone whether or not I can even get it published, is left to be seen. I'll write more about the book as time moves on and I get further into the process.

I guess that's it for now. This post is long enough. =0)

Work? Really? Not yet.

Here we are...it's April 1st. I can't believe we're 1/4 of the way through the year! I guess it's good that things are just moving along with no really big news.

I'm only visiting the BMT clinic every other week now with no blood work being done at the Intermountain Medical Center on the off weeks any more. I continue to take fewer and fewer meds every day. At one point, I took close to 50 pills a day, and now it's under 20. The numbers we're seeing in my blood work are about as stable as could be. Nothing remarkable at all. I'm so blessed. There are so many people with Plasma Cell Leukemia who never make it to transplant, through transplant, or beyond transplant with any semblance of decent health. A lot go into the hospital and never come out alive. Every day I thank God that I'm doing so well.

At today's clinic appointment, Noelle and I were talking with Dr. Hoda, and he said I could return to work now if I want or feel the need to. Noelle had asked when it might be safe to do so, and she and I were both anticipating he'd say something like "after you've been reimmunized," or something like that. Surprise! And it wasn't an April Fools Day joke, either. We all agree that part-time to begin is the best option, so we don't overtax my energy levels. Here's the thing...I'm kind of working part-time already with the voice lessons I've been giving for the past two months. AND...I really don't feel the need to go back to a traditional job right now. We've learned how to live off of the Social Security Disability payments I'm receiving, and I'm not interested in taking the chance of getting sick from someone at work for some "job."

I don't remember if I've blogged about this decision yet, but I've decided to not go back to sales if I can avoid it. I'm good at it, but the passion I once had for it is gone. I want to go to work for an organization like the Leukemia and Lymphoma Society, the National Marrow Donor Program (BeTheMatch.org), the Multiple Myeloma Research Foundation, the American Cancer Society, or an organization like those. Working in advocacy, fundraising, public speaking, marketing, event planning, or something like that would be awesome...and something I could be incredibly passionate about. I just need to develop and work my connections in those organizations so when something comes up I can be the first one they call.

I have 12 voice students now and things are going well with that. On May 1st, Amanda VandenAkker and I will be holding a joint recital for our voice students at Riverton Music's recital hall in West Valley City. Abby (who studies voice with Amanda) will be singing "Spark of Creation" and five of my students will be singing as well. I'll also be singing "Agony," a duet from Into the Woods with Ryan Lee (who also studies with Amanda). It will be the first time I've sung in a vocal recital in 11 years - since my graduate recital at CSU Sacramento. Amanda and I have decided to perform together in a joint recital later this summer. We'll each perform a couple sets on our own, then finish with some duets. It's gonna be so fun.

I've also decided, after discussing it with Noelle, that committing to do three 1/2 marathons this year might be a little too aggressive a goal. I mean, really. After what my body has been through, 13.1 miles in one shot is a lot to train for. I've decided to start with a 5K (3.1 miles, which I know I can walk with basically no training at all), then do a 10K (6.2 miles) or two, and later a 15K (9.3 miles). If I can manage that this summer, then maybe we'll shoot for a 1/2 marathon next summer. I just need to take this in steps, I think.

My friends who relapsed and had to go through the transplant process again are doing well. Houston is back home and Rebecca is doing well and should be returning home soon. Miracles keep happening for both of them. Rebecca was sent to the ICU with lungs that were hemorrhaging, and doing really poorly. They honestly weren't sure if she was going to make it. Then one day her condition improved dramatically. It was the same day her family and some others held a special fast for her. Fasting and prayer work. Christ explained to his apostles once that in certain cases, prayer and even priesthood blessings (the laying on of hands) is not enough, and that fasting is a necessary act of faith.

Well, I can't think of anything else to say. There once was a time when updates came fast and furious, sometimes multiple times a week. Gratefully, we've reached a point in which there's just not a lot of news. I'll be hitting one year post-transplant at the end of May, and that will be a more active time for updates. I'll be holding my second annual donor drive, attempting to make contact with my donor, and going through a bunch of tests to ensure that the cancer is still gone. In the mean time, I'll just keep doing what I'm doing and praying for continued wellness every day. It's in God's hands, and I'm good with that. =0)

Thank you, Southern California!

Well, it's been a few weeks. I guess it's time for an update. Hmmm...

At my clinic visit nearly four weeks ago, a test was run to look at my Kappa and Lambda light chains. In simplest terms, these light chains are markers in the blood that can be a sign of Myeloma. If the Kappa-Lambda ratio is above a certain level, it's a good indicator that the Myeloma has returned. The test was done on the 11th of February. It takes about a week for the results to come in. That was a week of nervousness for me. Finding out on the 14th that Rebecca's Leukemia had returned didn't help settle my nerves either. Finally, on Monday or Tuesday, the results came in and there was no phone call from the BMT unit. Noelle and I looked at the results and thought we understood what they meant. The ratio looked totally different from when I was diagnosed. As far as we could tell, everything was fine. Unfortunately, I was still worried. Why? No good reason. Noelle had to talk me off the ledge, so to speak. Finally, when we had our pre-vacation clinic visit on the 21st, Dr. Hoda was able to confirm what Noelle had been telling me for days. I was relieved and felt a little foolish for having been so worried even after the results were in.

This past Tuesday, I had a good clinic visit. My numbers were all great, even my liver numbers, which had been "tickled" at my last couple clinic visits. I guess the only number I'm concerned about is my weight. Ugh. I've been picking up a pound here, a pound there, and now I'm really not in good shape. I need to exercise regularly, starting tomorrow. Anyway...my doctors have begun the long-awaited taper of my Cyclosporine. That's the immuno-suppressive drug I've been on since leaving the hospital last July. As a reminder, the reason we're suppressing my immune system (my donor's immune system, actually) is to avoid GVHD (Graft vs. Host Disease). My donor's immune system can attack various of my systems, such as the gut and GI tract, the skin, the eyes, the liver, the kidneys, the heart, etc. Basically, it can view my different systems/organs as foreign and attack them, similar to how a patient's immune system can view an organ recipient's new organ as foreign and attack it. So, the good thing about tapering my Cyclo is that I can begin to have a functioning immune system. The bad thing is I can have GVHD and be miserable. I had some GVHD in June while in the hospital following my transplant. Unfortunately, that's a good indicator that I'll get it again. We tapered my twice-daily dose from 125 mg to 100 mg, and will continue tapering gradually over the next several months. Slow and steady gives us the best chance to catch and deal with any GVHD symptoms as they come little by little, rather than all at once, which could throw my body into a tailspin.

I've had really low energy this week, and I'm not really sure why. I've been really tired during the day and have fallen asleep every night except Friday without my sleeping pill. Huh.

Over the past two days, Noelle, Abigail and I moved back into our original rooms. It was an even bigger project than moving all our furniture and other "stuff" because Noelle had promised Abby that when she moved back into her room Noelle would paint it. It's a bright blue now. I mean really bright. Noelle is an amazing, multi-talented woman. She does so much for our family. I feel like an absolute worthless bonehead sometimes. Anyway...I'm happy to be back in the master bedroom. David (my brother) is almost done tiling our shower, too. There's just one little thing that needs to be done to finish. For a year and a half, we've been in this home with no shower in the master bathroom, and that problem is almost in the past. Thank you, David! The shower is beautiful!

The last week of February was our family's long-awaited and much-anticipated vacation to Southern California and Disneyland to celebrate my remission. It was EXACTLY what the doctor ordered. Not really - my doctors were pretty nervous about it and about me being around so many people. Anyway, we drove down on Saturday, February 22, the 1st anniversary of my autologous transplant. We left around 5:00 in the morning, and got to North Hills around 4:00. We visited Tim and Kelly (Tim is Noelle's cousin) for their son Camden's birthday party. After a couple hours, we left for Oceanside, where my parents have a timeshare that we were able to use (THANKS, MOM AND DAD!!!). We got in around 8:00 or so, checked in and crashed.

On Sunday, we went to La Jolla, where Noelle's sister, Blair, lives. We hung out on the beach for about 6 hours and the weather was perfect. Brenda, an old friend from Stockton and Sacramento, came to the beach with her boys while her husband, Matt, was in work meetings. So we hung out with them til about noon (I'm not exactly sure - I was napping when they left), and then Blair came with her housemate and best friend, Jo. They brought us lunch and hung out with us for a few hours. After I took my nap and ate some lunch, I decided I wanted to take a walk along the shore. My feet, ankles and legs were swollen and hurting from my blood pressure medication, but I didn't care. On my walk, I was able to reflect a bit on why we were there and how tremendously blessed my family and I have been throughout our cancer journey. Feeling the warm sun on my back, and enjoying the water lapping at my feet, I felt an outpouring of love for and from my Father in Heaven. He has been so good to me and my family. I am so blessed to have my head six feet above ground in stead of six feet under. The statistics for people with Plasma Cell Leukemia and Multiple Myeloma are not good. Every day I wake up with air in my lungs and a pulse in my wrist, I buck those statistics. Sometimes I lose sight of that. Well, the beauty of it all was not lost on me in that 20-minute walk along the shoreline. Sunday evening, an old friend from BYUH came to our timeshare to have dinner with us and visit for a while. Jennifer was in Showcase with us our first year at BYUH, and was Noelle's best friend (and roommate for a while) while I was on my mission. It was so good to catch up with her and laugh a lot. She is so fun.

Monday was day #1 at Disneyland. I love that place! I got my "Disability Pass" when we got there. It was awesome. With the pass, someone who is unable to wait in line with everyone (like me, who can't be surrounded by tons of people breathing their germs on me) can go to guest services booths around the park and tell them which ride they want to ride next and get their pass marked to go to the ride in a certain period of time based on the current wait time for the ride. When you go to the ride at that time, you get to walk through the Fast Pass entrance or through the ride's exit and basically walk onto the ride without waiting in line. It was fantastic. By the time we took a break around 3:30 to walk to the Rainforest Cafe for dinner, we had already done all the must-do rides that were open. When we got to the restaurant, we had a big surprise for the kids...Erick and Linzi Crans had driven down that day, met us for dinner, and were going to hang out with us Tuesday through Friday. The kids (ours and theirs) were all SO excited. Dinner was good, and after dinner we went back into Disneyland to ride more rides and re-do some of our favorites.

Tuesday was day #2 at Disneyland for Noelle and the kids, and a scheduled rest day for me. I'm really glad we had the foresight to do it that way, because after a full day of walking around Disneyland, my feet were swollen and desperately needed a break. That morning, we called the BMT clinic and asked if I could forego my blood pressure medicine for the duration of the trip in hopes that I could get some relief from the swelling. We were told that as long as I checked my blood pressure every day and it stayed below a specific level, I could leave it out of my daily pill-popping routine. Well, the Southern California coast must be good for blood pressure, because mine stayed well below where it needed to be throughout the rest of the trip. In fact, in the week we've been back from our vacation, it's still staying below where it needs to be without my medication. Yippee!!! So, while the rest of my family spent the day at Disneyland with the Crans family, I put my feet up in bed, watched a couple movies, spent some time massaging my feet in the jacuzzi, and just had a really nice, relaxing day.

Wednesday was a scheduled day for the beach and pool. Abby, Michael and I went to the San Diego temple that morning to do some baptisms for the dead (If anyone reading this is confused, please click here to clarify). It was a particularly special experience this time, as we had 21 of our own ancestors for whom we were able to perform baptisms, rather than for people whose names were had by the temple. It was the first time I have ever performed baptisms for my own ancestors who I had personally researched and prepared for the work. It was a very emotional experience for me. I felt their presence there as their ordinances were performed. I knew that they accepted those ordinances and were so happy. Michael and Abby both had a neat experience as well. After getting back from the temple, the Crans family came and we went to the beach to take some family pictures. We got some good ones. Then Erick and I went and played 9 holes of golf. Using clubs we borrowed from the course and the fact that it had been 9 months since I last swung a club made for a long nine holes. Erick and I played "best ball" and still didn't score very well. But we did have fun, and that's the most important thing, right? Wednesday night, we took some more pictures at the beach and made tacos for dinner. It was a good day.

Thursday was our day for California Adventure. We got my disability pass for the day, met the Crans family, and were off. The first thing we wanted to do was go to the new Cars Land and ride the Radiator Springs Racers. Wow. So fun! Then our families split up and we went to the Aladin show with Noelle's Aunt Gail. She got us VIP seating, so we were able to go in first and have our pick of seats. After the show, we waited in the lobby to meet with one of Gail's clients who Gail helped get into the cast of the show about ten years ago. She surprised us by bringing out all of the principles from the show with her - Aladin, Jasmine, Jafar, Iago, the Genie, and the Magic Carpet. We talked for a couple minutes and then took pictures with everyone. So cool. The rest of the day was great. My swollen feet were worth it.

Friday was a scheduled beach/pool day, but the weather was bad. I mean REALLY bad. High winds and rain didn't stop Noelle and the kids from going to the pool and jacuzzi in the morning, though. Seriously, I think they're nuts. I just hung out in the room. Friday afternoon, Noelle and the kids met Jennifer and her kids to see The Lego Movie. The kids really enjoyed it; Noelle thinks it's been over-hyped and that made it less enjoyable for her. She says it's good, but not THAT good. Friday night, the Crans came over for dinner, and the kids all watched a movie while the adults talked. We love the Crans so much and wish, as Linzi has said, that Nevada would disappear so we could be closer. Sorry to our friends who live in Nevada - there's just SO MUCH wasted space that you have to drive through to get from Utah to Californina.

Saturday was our day to travel home, but Noelle decided it was more important to spend just a little more time enjoying the pool, seeing that the nice weather had returned. We hung out at the pool and jacuzzi for a couple hours before heading home. It made for a long, long day, but we were OK with it. It had been a good vacation, and Noelle and I really enjoyed the "down time" we scheduled for the family. Thank you, Southern California, for the respite from the day-to-day life in Utah and for getting me out of the Salt Lake Valley for the first time in a year and a half.

Well, that's about it for now. I'm grateful to know that even though I'm doing pretty well, people are still praying for me on a daily basis. The truth is that with cancer, you're never really "out of the woods," so to speak. It can always come back. We can hope, pray, have faith...but the cancer is never completely out of your life. When we finished our clinic visit on Tuesday, Noelle and I spent some time visiting with Houston and Denise, and Rebecca, in their respective rooms on East 8. Rebecca said some things that struck me. One of them was that she had made the decision to live as though she's going to live, not as the walking dead. That's where goals come into play. Making plans for the future isn't something a person does when they know they're about to die. Noelle and I are planning a week in Park City with our kids this summer - the kids don't know this, so please don't say anything to them. I'm going to take Noelle to Paris, France for her 40th birthday next year. I'm going to walk three 1/2 marathons this summer. These goals will help me focus on the future that I will have...not that I might have...that I will have. It's not about the time you have in your life...it's about the life you have in your time. There's something to think about.

When Science Isn't Enough...

Sometimes science and all the medical advances in the world just aren't enough...

I've had a cold for the past several days, and yesterday was running a temperature of about 100 degrees all day. I woke up this morning a little after 3:00 and figured I should check my temperature. I grabbed my phone to use it's flashlight function so I wouldn't wake up Noelle with my bedside table lamp. On my phone I saw that Rebecca Dutson, a friend who Noelle and I met walking the halls of East 8 several months ago, had "tagged" me in a Facebook post 2 hours before. I wasn't prepared for what I read.

Her Leukemia is back.

I laid awake in bed for nearly two hours, crying off and on. How is this possible? I know the statistics. Not everyone makes it. Now, with Rebecca and our friend Houston Holbrook, I have two friends - people who have strengthened me and whom I have grown to admire so much - who are having to go through transplants again because the first one didn't work. Will the second go-around be any different? Were their first donor's cells just not strong enough to fight the cancer, or is the cancer too strong for any stem cells to fight it off? Will they be able to beat the odds stacked against them?

What does Rebecca have to say? "What now? We move forward with hope. My family and I are united in our understanding that God STILL knows best, even after being blindsided today. He knows my capacities and won't push me beyond, and knows where I need to be." Part of what makes Rebecca such an incredible person is her perspective. It's a big part of why she is loved by Noelle and I and who-knows-how-many others. We're leaving for a week at the beach and Disneyland next Saturday, and I wish we could take Rebecca and Houston (and Houston's wife, Denise) along with us. They are both suiting up for a battle they've already fought. It's a battle no one should ever have to fight, and they're having to do it twice. I wish I could give them my tickets to Disneyland and let them enjoy it and get some extra smiles in before they walk through the valley of the shadow of death...again. I almost feel guilty that we're taking this trip to celebrate my remission while two dear friends are wondering if they'll ever get to hear the words, "you're in remission" again.

Rebecca and I at last October's LLS Light the Night Walk

Rebecca is only about 160 days post-transplant. I'm 100 days ahead of her, and as far as I know, I'm still cancer-free, but for how long? For life? A decade? A year? A week? Cancer is so unpredictable. When I had my clinic visit on Tuesday, they took an extra vile of blood to test for Kappa and Lambda light chains, which are leukemic cancer markers in the blood. If my blood is clear, I'm still cancer-free. If not...well, in the words of Dr. Ashe, "Let's not think about that." Now, with this news and the light chain results still not in, it's hard to not think about it. It's hard to avoid fearing the worst.

When we sent out our Christmas cards at the beginning of December, we sent one to Elder Bednar (The member of the Quorum of the Twelve Apostles who visited us in our home a year earlier (see the post about it here)). He replied with a nice letter, telling us he's happy to hear of my remission. He also enclosed with his letter a copy of a CES fireside talk he gave on March 3, 2013. It's called "That We Might 'Not...Shrink' (D&C 19:18)." In part of his talk, he speaks about a 23-year old young man who was diagnosed with bone cancer just about three weeks after his marriage to his 20-year old sweetheart. When Elder Bednar visited them in the hospital, he asked them a very interesting question: "do you have the faith not to be healed? If it is the will of our Heavenly Father that you are transferred by death in your youth to the spirit world to continue your ministry, do you have the faith to submit to His will and not be healed?" That's a hard question - albeit an important one - to answer. I've pondered on that question several times since first reading Elder Bednar's talk. Do I have faith sufficient to accept my Father in Heaven's will for me, whatever it may be? Some days I feel strong enough to say I do. Other days I wonder how I would respond if given the same news that Houston and Rebecca have been given. Would I be strong enough to "move forward with hope," like Rebecca is committed to do? Or would I just fall apart? 

I'm a "Type A" personality. Having no control over things is really, really hard for me. It's been one of the hardest things about my cancer, even since being declared in remission in September. The fears of a relapse are real...not pervasive on a daily basis, but something I think about regularly. I think it's natural. I'm sure that most, if not all, cancer survivors deal with it in their own way. I was counseled earlier this week that one of the best things I can do to mitigate my fears is to "live in the moment" as much as possible...to be aware of and grateful for the blessings of each moment. Having goals that I'm working towards, like my 1/2 marathons I'll be walking later this year, is something that can also be very therapeutic and can distract me from the "what-ifs" over which I have no control. I think that's great advice. In her post last night, Rebecca ended with this thought: "Just a reminder - enjoy every moment, dear friends. Life is good." That's a great message.

Cancer sucks, but life is good. Thanks, Rebecca.