A Very, Very Slow Healing Process

Well, when you spend two weeks on your back in a hospital bed, mostly incoherent, it takes some time to regain what you lost. One of our favorite nurses on East 8 explained to Noelle and I recently that every day spent lying in a hospital bed requires 3 to 4 days of recovery time (and we've since heard 5 to 7 days) to regain what was lost in that one day. Two weeks! That's how long I was in bed. That means 6 to 14 weeks to just get back to where I was when I was admitted to the hospital on June 23rd! And when I began getting out of bed more around June 5th, it was still so little compared to what it should have been. Yikes! I'm not even three weeks removed from my release from the hospital or four weeks removed from when I BEGAN to come around. This is going to take some time.

I've begun outpatient Physical Therapy appointments two days a week, which will really help. They've given me some really good exercises to do and every time I do them, I feel weak, but invigorated. They're kicking my butt, to be honest. But I've got to get stronger. It's still a HUGE thing for me to just climb the stairs to the top floor in our home. I have no strength, relative to what I've grown accustomed to as an adult. Since my diagnosis in October - yes, almost 10 full months ago - I've lost about 50 pounds, a huge portion of which is muscle. I'm down to about 170 pounds, and with the steroids the doctors have me on, my metabolism is racing every day. I am doing my best to consume over 2,000 calories a day, and still can't put on any weight or muscle. I'm weaker than I've ever been since my childhood.

Cases in point:
Evening walks. I (typically with Noelle by my side) take a walk for a mile or so around the neighborhood every night (weather permitting). Just walking across the street, where there is a slight rise in the middle, can slow me down and tax my muscles. The neighborhood isn't completely level, though I never noticed it until now. Walking sidewalks that rise and fall is a strain.

Stairs. I have to use the banister(s) and work and breathe hard just to get up and down. If there's no banister, I'm in a lot of trouble.

The floor is not my friend. I can't squat, crawl, kneel to pray, or be on my knees for about any reason. If I do, it can take everything I have to get off of the floor. One day last week, I went down to the basement food pantry to get a box of Mac n Cheese for Michael and a friend who were playing here. I got down onto one knee to get the box and couldn't get up. I knew Abby was just above where I was, so I called to her to come downstairs and help me. She came down and literally had to pick me up off of the floor. Noelle later told me that I could have crawled to the stairs and gotten up there, and she's right. I just didn't think of that. Today I was organizing some things in my room and ended up sitting on the floor for a while. When I was done, I had to crawl over to the bed and pick myself up from a kneel, as if I were praying at my bedside. I tried with all that I have to get up off of the floor, but just couldn't without the help of my bed. My balance and strength in my legs and core are THAT bad.

One of the interesting things to me about all of this is that this issue I'm having with my strength has nothing to do with my cancer, per se. For nine months, my cancer treatments went really well. No illness during chemo, quick transplant stays in the hospital and feeling pretty good after and between all of those treatments for my cancer itself. Now, though, I'm dealing with the after-effects of what happened to my body due to a medication it couldn't handle and having trouble functioning at anything near what I'm used to. I told Noelle yesterday that sometimes I feel like I'm in my 80's, not 41 years old. That's so incredibly frustrating. Feeling like I should be checking into the Golden Living Center is not a good feeling. However, I have to count my blessings. It could have been worse - a LOT worse. I could have gone into the ICU (and would have if Noelle hadn't been able to stay with me one night in particular) or worse. My liver and kidneys could have completely failed, causing me to go onto dialysis, which they didn't. Again, that was an "almost" thing. I'm glad we're not playing horse shoes.

I've been cooking a bit lately, and when the kids are back in school, I figure I'll be doing even more cooking and baking around here. It runs me down a bit, but I can do it and it feels good to contribute a meal or two or three every week. Noelle has so much to do every day. I do my best to either help or stay out of her way completely. It's frustrating for us both, and emotionally exhausting. I want so badly to help and because I'm so weak and have no stamina, I can't. I just become a sixth child for Noelle. I hope to become less of a burden soon - very soon.

When the kids go back to school, I do have some projects I'll be working on to do my best to not be a nuisance to my sweet Noelle. I've written a children's book and have ideas for two books for adults. I'll also be working on writing my personal history. It's something I've wanted to begin for a very long time. Now, there will be nothing to hold me back. I also have some genealogical work to do.

For now, though, it's clinic visits continue once a week, with labs drawn on the clinic days and on another day during the week. I've begun taking a med called Cyclosporine, which is a "cousin" of the tachro med my body couldn't clear. We're watching that one and the levels of it in my blood very closely...we want no repeats of last month's performance. Add to the clinic visits my twice weekly physical therapy appointments, and we stay busy. The kids go back to school on August 21st, and we're doing our best to do lots of things as a family in the meantime. I lost about 4 weeks of their summer, and now I'm working really hard to not be a bump on the log.

Here are some photos since my release from the hospital. This first one is from yesterday morning at the Tracy Aviary, an aviary in Liberty Park downtown SLC.

This is me on my first day out of the hospital. Noelle and I took the kids to a splash pad that was a HUGE disappointment.

This is me making my "Mall Pretzels," which turned out oh, so good!

This is me with Dr. Sarada Krishnamurthy, with whom Noelle and I simply fell in love during her 6 or 7-week stay in SLC at LDS Hospital. She is such a wonderful doctor and a joy to know. We are happy she's back with her family now, but we were very sad to see her go.

If you can see, it's now after 2:30 in the morning, and I'm suffering from insomnia. Hopefully, I'll be able to get some rest in the next 4 and a half hours or so before having to leave for a clinic visit at 8:15 this morning. Happy dream hunting.

An Unexpected Haiatus

On Sunday, June 23, I went into the hospital for symptoms associated with dehydration. I just got home Friday, July 12. Nearly 3 full weeks of my life are now gone, never to be gotten back. As hard as those weeks were on me and my family, Noelle took the brunt of it squarely on the chin. To be perfectly honest, I don't even remember half of my stay. My liver and kidney functions were all screwed up, which caused me a lot of issues, including coherence and other issues as my body tried to sort through medications that just weren't filtering properly through my body.

What I Missed:
I missed my 41st birthday. I have vague recollections of my family members - many of them from out of town - coming into the hospital to wish me well. I missed the donor drive I had scheduled for that day. My goal had been to add at least 100 people to the National Marrow Donor Program's Be The Match Registry. I think I ended up coming in somewhere between 70 and 80. I still need to get "official" numbers from Trina, the woman from the NMDP who helped with the drive. Additionally, there are others who registered - or are still in the registry process - who need to be added to those "official" numbers. For example, one of my nurses who attended to my needs in the hospital over the past couple weeks got to talking to me about the drive, asking me how it went. I told her I didn't have official numbers, but that my understanding was that it went well. She told me that she was kind of ashamed that she wasn't on the registry yet, given what she does and the patients with whom she works. I told her she could still register - that it would never be too late. That night, during the duration of her shift, she and my Nurse's Aide for the night both got on the program's website and registered for their kits to be sent to them. I don't know if they went through my portal so they could automatically be logged as "my" enrollees or not. I'm just so glad they got off of the schneide, so to speak, and did what they should. There are others who emailed me to let me know that they had registered. There are several in California who joined at local drives or registered on line and had their kits mailed to them. So, it's going to be tough to know "official" numbers, but considering all things, I'd say that the drive was a success. According to my helper from the NMDP, between those that showed up in person that day and those who registered on line, we hit 119!!! I'm so, so happy!

I missed a family reunion. Nearly 30 family members from around the country descended on Taylorsville for a few days and I missed it all. I wish I had been able to participate. I love my family. Our next reunion of this scope will probably be some time a few more years from now, after my parents return from their mission. They'll be moving out here to Utah some time next year, then likely leaving around the end of the year for who-knows-how-long, probably some time between one and two years. Our next family reunion will follow their return from their field of labor.

What Passed Me By:
A lot. I went through a lot, and I mean A LOT of tests on various body systems. My liver and kidneys were really messed up, and so there were multiple tests and re-tests on those and related systems. Noelle could probably enumerate and estimate the total number of tests I went through. I'm pretty sure I don't even remember half of the tests they ran me through. I remember one MRI, because I HATED it. It took forever. I was very uncomfortable throughout the entire thing, and Noelle was right there. I was aware of how uncomfortable she was, which made it worse.

Several Days of Only Partial Coherence. There were many days of little-to-no coherence or awareness of my situation. There were days when Noelle did what she could to communicate with me, with little to no responsiveness coming back from me. We tried "John, squeeze my hand if..."There were days when I supposedly was lucid for an hour or so at a time, but I don't remember those times.

What I Remember:
There were periods of time when I was coherent and able to understand what was going on around me, though my ability to participate in any conversations about it was severely limited. Those times were very frustrating.

I recall some visits from family, friends, neighbors, though the content of those conversations is spotty, at best.

My coherence began coming back in earnest last Friday and Saturday. I had begun working with the folks in Physical Therapy on basic things like walking. I remember the first time going out with them to walk the halls on Friday I had such a hard time just keeping my walker going straight. I kept running one of the PT guys into the wall. I had developed stooped shoulders and a mean forward lean which they worked really hard to correct. Saturday was when the physical therapy started to really take its effect. I began to respond well to the exercises and walking. I will never look again at the people in the halls of East Eight who are struggling to walk the same way. In my various stays, I've frequently lapped my associates walking the halls and wondered what was making it so hard for them. I never realized just how bad things can get. There I was last weekend, doing everything I could to walk a single lap and keep my walker going straight and not having a good time of it. My issues weren't caused by my cancer. My issues were caused by a body that was struggling to rid itself of toxins and clear medications that had been in my system for weeks, though none of those medications had been added to my system for weeks.

Last Saturday morning was the first day I remember waking up and feeling the beginnings of healing. Interestingly, Noelle had reached the end of her rope Saturday morning. She tells me that on her way to the hospital that day, she had a very frank conversation with our Father in Heaven, telling Him that she was done and that she needed His help with me. Little did she know that the answer to that plea had already begun to be fulfilled in how I felt when I woke up. She got to the hospital to learn that I had been talking and making sense for the first time in a while. By Sunday, I had set the goal for me to be out of the hospital by the end of the week. Noelle thought my goal was a bit too aggressive, but I knew I could do it. Since then, my head has continued to clear every day, and my abilities to communicate clearly and effectively have improved every day as well. I still have some trouble putting words together or holding a thought in my head for very long, but every day is better and we'll continue making strides.

Now it's time to begin catching up on my life. I have a lot of time to spend with my kids and wife. I've got about five or six weeks before my kids go back to school, and want to be sure to spend lots of time with them before that starts back up. Today is about day 47, post-transplant, which means we're about 1/2-way to a pivotal bone marrow biopsy and other tests that will show us how effective the transplant has been. That's something I'm nervous about, but there's nothing I can do about it at this point, so I just wait. Next week Thursday through Saturday, I'll have a visit from "the guys," which will be so good to have. They were last out here in March, with snow on the ground. It'll be good for them to see/experience Utah in warmer weather. We'll go back up to Silver Lake and walk around it, which we weren't able to do in the winter with six feet of snow covering the lake. I'm happy to be home and feeling stronger every day. This post may not have the best "flow" of any I've ever written, but it gets the gist of things down. Future posts will likely (hopefully) be more like me and my typical style of prose, but for now I just needed to get some of this stuff down. More to come as the healing continues over the coming weeks...

Home for Father's Day and My Recovery

Miracles happen. I was able to leave the hospital just 16 days after my transplant. Dr. Clyde Ford, one of my Oncologists, says he's pretty sure that's a record. I feel pretty good, though my energy levels fail me before I want or expect them to. Noelle says I do too much, and she's probably right. She has me napping every day to regain my strength.

Father's Day was nice...mostly. My wife and kids did everything they could to make it a relaxing, memorable day for me, but four of them were not healthy. Noelle and Jenna had low-grade fevers and Noelle had stomach cramps that made it difficult to impossible for her to eat. Michael and Emma both had fevers (Michael's was 102 degrees and Emma's was over 100 degrees) and weren't interested in eating much. So I got up and got breakfast for the kids, and let Noelle sleep in a little. She got up around 10:00, in time to get herself ready and take kids to Church for Sacrament meeting. Michael and Emma's fevers hadn't risen to the levels I've mentioned yet. It wasn't until the afternoon that they started to do so. Some of us had my Father's Day meal of choice: milkshakes. Granted, that WOULD NOT have been what I chose for dinner under normal circumstances, but eating solid foods is a chore right now. Even with over half of us not feeling well, the kids and Noelle all gave me little gifts. The kids had each filled out a paper called "Meet My Dad." It was pretty funny to see how each of my kids chose to describe me. Also, there were lots of little gifts made at home or at church. Noelle gave me a framed thing about fathers. It's hard to describe, so here's a picture of it.

My "big" Father's Day and Birthday gift came a few weeks ago while at the hospital: a brand new iPad. It was very helpful in the hospital, as my laptop is on the fritz and truly hates me, I think.

We're moving forward with the donor drive that's scheduled for my birthday, June 28th. I'll have plenty of volunteers, and should have more than 100 people coming to register in person. There are two people I know who have gotten their kits and sent them in already. One is going to a drive this weekend. Another has ordered her kit. My mother tells me of two people she works with who have committed to order the kits and join the registry. Hopefully, she'll follow up with them and ensure they keep their promise. That's 6 people already added or being added. I'm excited for the drive.

My energy levels get better every day. I still get nauseous and puke every so often - about once a day - but it's not too much to deal with. I just wish I had more lead time with my nausea. I get that nauseous feeling, and I've got about 30 seconds or so until I'm puking. That's frustrating and sometimes inconvenient, but what can I do about it? Nothing, unfortunately.

Well, not too much to report, I guess. At least I don't know what else to say, so I'll just end for now.

Homeward Bound...?

Well, after three and a half weeks here in the hospital, it looks like I'll be going home tomorrow. There have been a ton of healing thoughts, fasting, and prayers offered in my behalf to make this happen. I am so thankful for all the hundreds of people who have kept me in their thoughts and prayers. I do not believe in miracles...I KNOW MIRACLES HAPPEN! A few weeks ago, Noelle and I were walking the halls and we bumped into a member of our medical team. We told them that we expected to be out of here by Father's Day, and they drew back a little and told us that our expectations were too aggressive and suggested that we should revise it to be closer to my birthday. Noelle and I refused to revise our expectations, and here we are. I believe strongly in the power of positive thinking. I believe you get what you EARNESTLY and PRAYERFULLY seek. Yes, I said prayerfully. This is my blog , so I'm allowed as many "soapbox moments" as I want, so here we go...

God is a real being. He is our creator. Also the Bible says, He created us in His image, which means that we are like him. He is not some nebulous thing floating around somewhere. He is our Father. He loves us, His offspring. He is perfect, and His love is a perfect love. He knows all things, including the lessons we most need to learn and the best ways to teach them to us. Sometimes, as good parents do, He lets us suffer a little so we can learn our lessons more deeply, more thoroughly, and so we can develop traits that make Him perfect and make us more like Him. These are traits like love, compassion and patience. His Holy Son, our perfect Brother, Jesus Christ, said that our responsibility as Christ's followers (disciples) is to become perfect, even as our Father in Heaven is perfect. We can't develop perfect patience or compassion without having suffered a little...or perhaps a lot. When, in the midst of our own struggles and afflictions, we reach out to our Father in sincere prayer, He listens, and always rewards our humility with what's best for us. Sometimes, what's best for us is the answer, "No." (Remember Christ's supplication of his Father in the Garden of Gethsemane, asking Him to remove the bitter cup if He were willing to do so. It needed to happen, so the answer was "No.") Other times, what's best for us is precisely what we seek, because what we seek is in line with His will. (Also remember Christ's humble plea, "Nevertheless, not as I will, but as thou wilt.") My point here is this: dozens, perhaps hundreds, of people have been praying for me to enjoy a speedy recovery. Last night, I wrote on Facebook about Noelle's and my desires for me to be home for Father's Day and mentioned the need for my neutrophils to be at 500 or higher by Friday morning. Lots of people saw that and prayed for what we needed. The neutrophils jumped from 200 yesterday to 700 today. I just had a visit with Dr. Ford, who says that unless my white cells or neutrophils take some unexpected dip over night, I can expect to go home tomorrow. That is God answering prayers and providing a miracle for one of His children. Our prayers were in line with His will, and the miracle was provided. 

Lessons have been learned over these past few weeks, lessons that couldn't have been learned without some suffering. I have increased in patience. I have increased in compassion. I have increased in love for my wife and children, for my donor, for the dozens of individuals here at the hospital who have had a hand in taking care of me, and for the hundreds of family and friends who have followed what's been going on and who have been sending me their healing thoughts and healing white light, and sending their prayers up to God in behalf of me and my family. I'm so blessed to have amazing people in my life. 

A Room With a View

The worst part of my first 18 days here has been the view - or lack thereof - out my window. I've been looking westward at another wing that runs parallel to this one. I've been in the wrong part of the building to have any view at all. Actually, to be perfectly honest, I HAVE had a view of Temple Square...when I'm standing by my bathroom door. Other than that, just a view of the west wing of the building. 

I think it pays to be a patient that everyone likes (pardon me while I pull a muscle patting my own back). The entire nursing staff and all of the doctors have known that when a room with a nice view becomes available, I have wanted them to let me know about it. Well, Wednesday morning, Dr. Sarada Krishnamurthy let Noelle and I know that room 854 would be vacated yesterday and that if I wanted to do so, I could move into it after it had been properly cleaned. We were also told that room 803 would likely become available on Saturday. Rooms with even numbers look out their windows to the east, and odd numbers to the west. The only odd-numbered rooms with a view of anything other than the building would be rooms on the end, like 801 or 803, with views of the valley to the south-west. Perhaps room 853, on the north end, might have a view of Ensign Peak, but not great. So, yesterday evening, I went for a walk around the unit, and when I got to the nurses' station, I asked if 854 had been vacated yet and if so, if I could see it briefly to decide if it would be worth it for me to move to it. I was taken down to the room, which had JUST been vacated. Wow! Two windows instead of one, side by side, with the bed right next to the window. The room is really big, too. With the length of this stay, why in the world wouldn't I want it? Yes, there's the chance that just a day from now, a room with a spectacular view of the valley and the temple would become available, but I didn't want to peg my hopes on that, only to find that the view isn't as good as I had hoped. I jumped on the opportunity to take room 854. I'm so glad I did. 

Here's the view from my last room, East 811...

And here's a shot of my new room...

And my new view... 

"Enjoying" Abdominal Pains and Mouth Sores

Well, the past couple days have been marked with the advent of two not-so-fun side effects of the chemo and my lack of neutrophils: mouth sores and pains in the abdomen. The abdominal pains began on Saturday night and have increased since then in both intensity and frequency. Yesterday morning, we had a CT scan done on my abdomen to see if we could find the cause of the discomfort, but alas, we found nothing. In one way, that's encouraging: there's no infection. On the other hand, what the heck IS causing the pain? We don't know. So, for now, we're just treating me for the pain and ensuring that it doesn't get out of hand. The pain in my abdomen does spike on occasion, leaving me feeling weak and making it difficult to breathe. It seems to be worse when I stand up or walk.

The mouth sores are along the outer edges of my tongue, right where the tongue rubs against my teeth. Not so much fun. I'm also developing a sore back-of-the-throat. If it all gets much worse I may have to ditch eating for a while and go on TPN (IV nutrition that both looks and smells like sour milk).

I'm getting very excited about the drive I'll be holding on my birthday (June 28) for donors to be added to the National Marrow Donor Program's registry. That's how my donor was found, and I want to give back to the system that has potentially saved my life. We don't know yet, nor will we know for some time, what are the end-results of my allogeneic (donor) stem cell transplant, but what I do know is this...without my transplant, the chance of a cure for my cancer stood at 0%. Now, it's much, much better than that. I have set the goal for myself to see 100 people added to the donor registry that weekend, and I'm working hard to see that happen. I have invited all of my Facebook friends, and several of them have invited others. I'm hoping that my efforts are enough. This is something I feel incredibly passionate about. I'm even going to try to lure more people there with some discounted food from Café Rio, Moki's Hawaiian Grill or Chili's and a special appearance by Jeremy Hoop's band, Mayday RED. We'll see how it goes.

My donor's cells should start to show us something somewhere around Day 12 to 14, counting from the transplant date (May 29th) as "Day 0." Today was Day 7. So, in theory, some time during the first half of the coming week, my blood counts should begin to make a comeback and I should begin to feel better shortly thereafter. Here's hoping...

Happy, Happy, Happy Birthday to Me!

It's June! Is a month that has always signaled good things for me, starting with my birthday. And since 2000, Father's Day has been a part of that, too. Well, Father's Day is always the third Sunday of the month, and my birthday is always in the last week of the month, so why be excited about them, or even mention them, this early? Well, I'll get to that.

Last I wrote, I was in the middle of four days of preparative chemotherapy for my transplant. The remainder went well, with the exception of the fact that it was always super early in the morning. I didn't care much for that, but got through it. Monday and Tuesday were "rest" days from the chemo and before my transplant, but they were days for the infusion of another drug, called ATG. I don't remember what it stands for, but it's purpose is to ensure that my body wouldn't reject my donor's stem cells. Those two days went ok. I was really nervous about them because a number of patients end up in the ICU from the ATG. It was also the only thing about this transplant that differed a bit from the first one. But, I made it through just fine. On the two ATG days, I was given Benadryl to ward against an allergic reaction. It made me incredibly, incredibly drowsy, and (Noelle says) very funny to talk with. 

Tuesday evening I had a cool surprise. Kanani and Matt Oblad - old BYUH friends who live in Visalia, CA - popped in to see me. They're in town for some baptisms in their families, and had some time Tuesday evening to come in and cheer me up. They stayed for about an hour and it was so great to hang out with them. I'm so glad they carved out some time to see me.

Matt and Kanani and I...

Wednesday was my NEW new birthday. June 28th has always been my birthday, but when you receive a marrow or stem cell transplant, the date of the transplant becomes a new birthday. I've had two transplants, so now, I have three birthdays. Pretty cool, eh? Here are some pictures from my NEW new birthday.

The Package the cells arrived in...

The people who delivered them to me...

Me, signing my life away to get the cells...

My mom came for nine days to help with the kids while Noelle visited me during the day every day. She also spent both of her Saturdays with me here in the hospital. It's been really hard for her to be so far away and to feel so helpless. Now that she's met some of the staff helping me and caring for me, she feels much better.

Here's a picture of Mom and I from her visit...

Thursday through today has been all about monitoring my body's systems and ensuring that everything is running smoothly. This morning, my red blood cell count dropped below the threshold they have established for anemia for patients in my situation, so I received one unit of red blood cells in order to bring me back above that threshold. We'll see how my numbers look tomorrow. It's   par for the course to need transfusions when waiting for one's stem cells to engraft and begin to produce blood cells on its own. Last time I received 2 units of red cells and 2 units of platelets.

Here are my red cells going into me this morning...

Well, I need to take a nap. More later...

Under Way with Transplant #2

So I'm here in the hospital, room East 811, and wishing I had a room with a better view...i.e. ANY view. Other than that, though, things are pretty good.

In my last post, I listed the things I wanted to do with my last week out of the hospital. I'm pretty happy to report that I accomplished most of it. Noelle and I went to the Tracy Aviary in Liberty Park downtown. We went to lunch at the Market Street Grill. I went to the temple with Abby to do baptisms for the dead. The next morning, Noelle and I went to all-you-can-eat french toast at Kneaders Bakery and then to the temple to do some ordinance work. I went with my brother David to get tile for our new shower. I was treated to a round of golf by Dr. Jim Smith, my old collegiate choir director and voice teacher from BYUH. Not only did we have a great time, I also shot my best score ever on a Par 72 course.

Unfortunately, our plans to go to Arches National Park on Friday were botched, so I went out that morning and played an other round of golf. I didn't score nearly as well on that round. Noelle and I went to a Salt Lake Bees game and dessert with David, Brook, Jeff and Rachelle.

Our family spent some good time playing some games together at home, and on this Monday morning, I took the kids to Kneaders for breakfast before school. Noelle suggested that to me on Sunday, as I would be entering the hospital Monday afternoon. I liked the suggestion, and the kids and I had a good time and enjoyed the delicious food.

The first few days here in the hospital have been OK. Chemotherapy has begun, but gratefully my neutrophil counts are still good enough that Noelle and I have been able to get outside for a walk or two each day. I was going to participate in a study with some test medication (or a placebo) to prevent people in my position from contracting c-diff, but as it turns out, I have contracted it early and won't be participating in the study. I feel fine, though, and don't have the horrible constant diarrhea that tends to go along with it. Chemo is given VERY early in the morning, and tends to make me pretty sleepy during the day. There are two more days of it, and then two "rest days" on Monday and Tuesday of next week. Finally, on Wednesday, the 29th, I will receive the stem cells from my donor that may save my life in a very literal sense. After that, we just wait for the stem cells to engraft and start producing blood cells.

That's about all for now. I'm not in pain, and I'm just taking it easy. I miss my kids, though. Tonight, when I talked with each of them on the phone, I asked them to draw me some pictures to put up on the walls of my hospital room. They each agreed to do so, so by Sunday afternoon, I should have some nicely decorated walls that help me feel closer to my kids.

Someone asked me recently...

Someone asked me recently what color ribbon represents awareness for my kind of cancer. I was embarrassed that I didn't know. Now I do. It's burgundy, which was one of my and Noelle's wedding colors, ironically enough. So, If you'd like to wear a ribbon for Multiple Myeloma awareness (there's no specific color for my version of MM, Plasma Cell Leukemia), then please do. I think I'm going to order pins for Noelle and myself.

One Week to Go, and I'm Gonna Make the Most of It!

In one week, I'll be admitted to LDS Hospital for my allogeneic stem cell transplant. Over the first several days following, I will be receiving a round of very high-dose chemotherapy medications that will wipe out my white blood cells and all of my bone marrow. Through and following that chemotherapy and for the following couple weeks, I'll feel like death just barely warmed over. It will take a couple weeks for my donor's stem cells to engraft and begin to generate new blood cells. With no white blood cells and levels of red blood cells and platelets diminishing daily, my energy levels will be very, very low, and Noelle will have to work hard to get me out of my bed and go for little walks around East 8. BUT...

In the mean time, I feel absolutely great. My energy levels are good, and I have a week before I need to be concerned with what's coming, so I'm gonna make the most of the week I have. What shall I do?

I'm going to play at least one round of golf. I don't have much money, and I need to have a golf cart to preserve my energy levels, so I can only afford Fore Lakes Golf Course, at about $10 a round, as I recall.

I'm going to drive my family down to Arches National Park and see the really famous arch that's on Utah auto licence plates. My kids don't know this, so please don't say anything to them.

I'm going to go see a baseball game. I wish I could see a San Francisco Giants game, but the Salt Lake Bees will have to do.

I'm going to enjoy all-you-can-eat french toast at Kneaders Bakery and Cafe with Noelle.

I'm going to spend (or waste?) some time playing some games on the XBox 360 that I earned at work last December. Since installing it shortly after Christmas, I think I've spent a total of about 30 minutes on it. I hear it's a blast. I should really find out for myself.

What else am I going to do? Aside from a couple things I have to take care of for Noelle, that's about all I have planned. I have no idea what else I should do. I'll take a walk every day. I may go out and play another round of disc golf. I played for the first time on Saturday evening with my brothers David and Jeff. Noelle suggested we could go to the Tracy Aviary. She's been with the kids a couple times, but I've never been and we have free tickets. I don't know what else, though. Perhaps I'll solicit some ideas from others who have lived in the Salt Lake Valley longer than I have. I just know I don't want to sit around doing nothing this week. I'll have plenty of time to do nothing over the course of the four to six weeks I'm in the hospital for my transplant. But until then...

I'm gonna make the most of my time and energy! I just need to come up with more to do!

An Update Because It's Been A While

Well, it's been a while, so I figured it's about time for an update. Things have been fine for me. There's nothing of tremendous interest going on, really. When I had my last visit to the clinic (on April 17th), my bloodwork looked fine, so I was told I didn't have to come in again until next Tuesday, May 7th, when we'll be doing our "work-up" day for the second transplant. So last week and this week, I'm just going in to the infusion center in the Cancer wing at Intermountain Medical Center (IMC) so they can change the dressing covering the central line in my chest. It's nice to not have to go in to the BMT clinic at LDSH, because IMC is just 5 minutes away.

The work-up day is about making sure we establish a sort of base line for my upcoming hospital stay. They'll check a lot of things and I'll be there most of the day. At 8:45, I show up for a skeletal survey and chest x-ray. The chest x-ray is to check for things like pneumonia, which I've had twice since my cancer diagnosis last fall. The purpose of the skeletal survey is to determine the current state of my bones. Multiple Myeloma produces lesions in the bones. In my case, at least in October, many of my bones looked like swiss cheese when I saw the images from the bone survey I did then. Since October, I've been receiving a bone strengthening drug called Zometa every four weeks or so. We'll see if there's any difference in how my bones look now compared with how they looked 6 1/2 months ago. After that, we'll do an EKG and an ECHO. The EKG (electrocardiogram) measures the electrical efficiency of the heart, i.e. whether the heart's electrical pattern is too fast, too slow, erratic or normal. The ECHO (echocardiogram) is an ultrasound of the heart. It measures the size and shape of the heart, the size of the valves and chambers, how well the valves are functioning, how the two sides communicate, and the rate at which the blood flows through and out of the heart. After that, I'll have blood drawn for multiple tests and THEN, my FAVORITE PROCEDURE EVER...a bone marrow biopsy. Yippee. Though my first biopsy taught me empathy for women who go through childbirth and people who break a femur, my second one was bearable, thanks to Steve, the PA who performed my it. I've requested that he do this one, as well. My day will end with a couple pulmonary function tests, where we get to see how my lungs are doing. And that's my work-up day. I'll probably be leaving the hospital around 4:00 or 4:30. It's a long day of getting poked, prodded and scoped, but it has to be done.

I also have an appointment with a doctor who is a Gastro-Intestinal specialist tomorrow (Friday) at 2:30. My Care Coordinator scheduled it for me to check on the system that gave me such a problem with the in-hospital recovery from my first transplant.

I've decided to throw a kind of birthday party for myself this year. Well, not really a party, but if it goes the way I hope, it will be the best "party" I've ever had. I want to get at least 100 of my friends and family added to the National Marrow Donor Registry on the weekend of my birthday, June 28th. My family (my parents and their posterity) will be having a family reunion that weekend, beginning on Thursday, June 27th and running through Sunday (I think). The reunion is here in Taylorsville, seeing as David, Jeff and I all live here. Adults in my family will give this Registry "drive" a good head start. Beyond that, I'm counting on a lot of my friends and neighbors coming through for me. I've put together an Event page on Facebook, and sent out a couple emails. I'm hoping that family and friends around the country will help spread the word. I don't care so much if someone's here for the event or if they get the donor kit wherever they live and send it in. If I can instill in 100 other people a sense of the tremendous need there is for more donors to join the registry and to see them act on that understanding, that will be the best gift I could imagine. There's such a need for donors. As I put it in a couple emails and on the event page, "there are tens of thousands like me every year...people who depend on the Registry being able to find a stem cell or bone marrow donor who is a match for their own marrow - someone who represents a chance at life. The fact of the matter for me and the thousands like me is that if a donor is not found, we will die. Our cancer becomes a death sentence. I am one of the lucky ones...I had 27 potential matches in the Registry, and one of them is a perfect match. It breaks my heart to learn regularly of others like me with blood cancers who have NO MATCH IN THE REGISTRY. I'm just trying to do my part in helping those people whose life depends on more people being added to the Registry and waiting in the wings to become someone's hero." I hope enough people get it so I can reach or exceed my goal of 100 new people on the Registry for my birthday.

The Donor's on Board - May 20th is the "Go" Date

Well, a week ago, I said we were targeting May 6th for my admittance date for my Allo transplant. That date won't work for the donor, so we had to push it back by a couple weeks. Now, I'm scheduled to go in on May 20th, which is only two weeks later, so it's not that bad. I'll be in the hospital for Memorial Day, but I'm OK missing that because my birthday (June 28, for those who are keeping track at home) is 5 weeks and 4 days after I get admitted to the hospital. I'm told to expect between 4 and 6 weeks for this hospital stay. I doubt that I'll end up pushing close to the 6 week mark with all the prayers and fasting that'll be going on in my behalf while I'm in the hospital, so I fully expect to be home by my birthday. Now, my doctors may suggest that I temper my expectations, but I temper what I choose to temper. I said I wanted to be done with the hospital stay for my Auto transplant on the short end of the 3-4 week window they said was the norm, and I walked out of there exactly 3 weeks after I walked in. And that was with a bowel infection and chronic vomiting. I think I can be home for my birthday this time. I'm shooting for four weeks.

For the Auto transplant, they got me in there on a Tuesday morning, gave me high dose chemo drug Melphalan that day and the next, let me rest on Thursday, and infused the stem cells on Friday. This time around it'll be a very different preparative regimen. My stem cell infusion isn't until the 29th, nine days after I walk in the doors. This preparative regimen is more common, as I understand from Rachael (my Care Coordinator, in case you've forgotten). She says the two-day prep with Melphalan is the shortest regimen they have. The rest are much longer. So, that 9 days accounts for a week or so of the difference between the 3-4 week window for Auto and the 4-6 week window for Allo. I got out on "Day 17" (or 17 days post-transplant) last time. This time, "Day 17" will be June 15th, 3 weeks and 5 days after I get into the hospital. I'll give it a couple more days, til "Day 19." That'll be four weeks. That's my target.

I've been doing pretty well lately. It's been pretty cold, and it's rained a few times and snowed a couple times, so I haven't been walking much. Though it wasn't warm at all, I walked a couple miles today, and it felt good. I stopped and had a nice chat with President Curtis Ivins, our Stake President, and his wife Aleisha, who live on the street behind us. They both complimented me on how good and strong I'm looking, and I appreciated that. I feel really healthy, but I don't feel really strong. I've lost a TON of muscle tissue over the past couple months. Noelle assures me I've lost some fat, too. My arms, which were never very muscular are smaller than ever, and my legs, which were pretty muscular, are pretty sad looking. I just don't have the physical strength I used to have. It's really sad to me that when you get sick and have to be in the hospital and, even worse, on liquid nutrition, it's your muscle mass that goes away and not your fat. I guess it serves me right for having so much fat there in the first place. =0S

So, Noelle's been needing a break for some time now. She's really tired every day, physically, yes, but also emotionally, psychologically, and in every other possible way one can feel tired. Well, I reached out to some of the women she's closest to, and they've come through in a rather remarkable way to help Noelle out - and me and the kids, by extension. A happier, more relaxed Noelle makes for a happier, more relaxed Philpott home. I asked these women if somehow, one of them would be able to take Noelle away for a couple days. It was originally going to be a surprise, but I ultimately felt I had to tell Noelle. That has turned into the following: Linzi Crans, Noelle's best friend from California, is flying out next Monday night. On Tuesday, she's taking Noelle up to her sister's house in Perry, UT (about an hour north). Her sister's family will be out of town next week, so Linzi and Noelle will have the house to themselves. They'll return on Friday afternoon after three and a half days of hanging out at Linzi's sister's house and doing a bunch of girlie things. The other women have contributed to this adventure by funding Linzi's airfare and contributing "fun money." I can't wait to see pictures and talk with Noelle every night. They're going to have so much fun. I'm actually kinda jealous that she gets to get away, but not really jealous. How can you be too terribly jealous of someone who's getting precisely what they need in recompense for how well they've been taking care of you. =0) That's why I was so excited to do this for her in the first place.

The News We've Been Waiting For!

WE'VE FOUND A DONOR!!!

Yesterday I got a call from Rachael, my Care Coordinator at the BMT program. She said we found a donor for me. Out of the 27 possible matches in the registry, Rachael requested that the "top six" (however it is that they are classified as being better than the others...) be contacted by the registry and blood samples be requested for testing. As it turns out, five of the six were "unavailable." I think that means that they couldn't be contacted because they had moved, changed phone numbers or died. Either that or when push came to shove they just weren't willing to go down this road. Anyway, one of the six sent in a blood sample and he was a match, as Rachael said, "in every way we wanted." Yay!

Holy cow. I have my donor for my potentially curative allogeneic stem cell transplant. All of a sudden, this next step has become very real. All of the nervousness that had been on the back burner has come to the front. I'm not scared. At least, I don't think that's the appropriate word for how I feel. Noelle put it this way last night: "We have just one shot at this working. It either works or it doesn't." She didn't have to continue to the obvious "And what if it doesn't?" As I've said before, I died on the day I was diagnosed with cancer. Every day since then is a blessing. I don't want to consider the "what if..." question. I can't afford to do so. I have a wife and five young children who need me, and I need them. It's hard to look Heavenward and say, "Thy will be done," while recognizing that God's will might be to take me home. I don't think that's his plan, though. I've had several impressions and thoughts since the end of September which give me the distinct feeling that I'll be around for many years to come. Still, knowing that the GVHD is nearly impossible to avoid does make me a bit nervous. That's probably because one has no idea which of the body's systems (and how many systems and how severely) will be attacked by the graft. Will I be able to go back to work in a year or so, or will it be several years...or never? Some patients' GVHD is so severe that they become permanently disabled and can never return to work. I don't think that will be me.

Rachael told me today that she's aiming for May 6th to be the date I'm admitted to the hospital. I've been told to expect a total of from four to six weeks in the hospital. If I go the full six weeks, I would be discharged around the 17th of June. That's two days before my brother Jeff's birthday, eleven days before my 41st birthday, and ten days before my parents' family reunion begins right here in Taylorsville. The majority of the family will be here. It will be good to see everyone who's healthy, though I won't be able to participate in many - if any - of the activities other than family meals.

Anyway, When I'm back in the hospital, Noelle will need some help with picking up kids from school and things like that so she can maximize the time she can spend with me in the hospital. a couple of her sisters who came out in February and March have offered to help again, as have my mother and Noelle's aunt, Gail. We don't know if May or early June will work for any of them. I think the kids' last day of school is June 6th. Once school is out, we'll definitely need someone(s) with lots of energy and patience to be here with the kids all day long. We worked it out when I was in the hospital before, and I'm sure we can work it out again. And when I say "we," I mean Noelle. =0)

Well, I need to eat lunch and take a nap. More later...

A Sister's Visit, A 5K, Spring Break and Insight into Noelle's Needs

On Tuesday, March 26th, my sister Christy (long-time Santa Rosans know/knew her as Linda) came to visit for a week. It was a lot of fun to have her here. We spent a lot of time talking, and she really seemed to enjoy being here and getting to know the kids a lot better. The kids enjoyed spending time with her, too. We were also able to give her some good time with David and Jeff's families. Here's a shot of Christy with her three "little" brothers.

One morning, Noelle and I took her to the Jordan River Parkway, even though it's the least beautiful time of year to see it. We walked over two miles that morning, enjoying the nice weather we had during the week. One night we introduced her to Ticket To Ride, our favorite board game of all time. Overall, we really enjoyed her visit. On Friday, the 29th, Jenna got sick--sort of a one-day fever enough to keep her home from school, then gone the next day. But even though the fever was gone on Saturday, she still wasn't feeling 100% and still could have been contagious, so it's good that Christy was here with us, because...

I've mentioned in other posts that I've been walking every day that the weather allows for it. Well, on Saturday, March 30th, my family and I walked a 5K to benefit the Leukemia and Lymphoma Society. My brother, David, and his family came out to walk it with us, as did Matt and Melina Moore and their kids. Christy was able to stay home with Jenna. Here's a picture of us before the race.

Before the race began, Nathan Lunstad, who is the Leukemia and Lymphoma Society's Man of the Year for Utah and who sponsored the race, invited me up to the starting line where he was speaking to everyone there. He gave me some special recognition as a current patient who's fighting leukemia. It was nice to be recognized like that. David's family walked with Carter, who hadn't quite made it to his 5th birthday yet (it was just yesterday, April 8th), and he could only make it through one of the two laps, so they only walked half of it, but a mile and a half is pretty good for a 5-year old kid. Matt Moore walked the entire 5K with me. He shaves his head, so as we walked I think others who passed us thought we were both cancer patients. =0)

In our family, Abigail finished first--she and Aija Moore ran some and walked the rest. Of course, Matt and I picked up the rear, but finished in less than an hour (between 57 and 58 minutes), according to Matt's time keeping. I thought we took more than an hour, but I'll accept his data. When I came around the last bend, my family was there waiting for me, and encouraging me to run the final 50 to 100 yards. I was afraid my brittle leg bones would snap, but figured there were a bunch of doctors from LDS Hospital East 8 there, so why not? As I ran the last 50 yards or so with my family, Nathan Lunstad was there running along side us. There were people shaking cow bells and applauding as I crossed the finish line. It felt really good. Here's a picture of us running the last few yards to the finish line. Nathan is the man in black on the left.

Mid-way through Christy's visit was the beginning of spring break for our kids. We spent a lot of good time together as a family, playing games, going to the park, etc. The kids accompanied me on my daily walks a few times, and one time Jenna reminded me that I still hadn't taken my walk for the day after 4:00. "Dad, you still haven't taken your walk today. Can we go together before dinner time?" She can be very sweet sometimes. =0)

Spring break was also pretty enlightening as it pertains to how Noelle's doing. Over the past couple weeks, it's become evident that she's incredibly stressed. Noelle's been put through the ringer lately with our kids' behavior, and Spring Break was highly concentrated time with the kids and their behavioral issues. There have been a lot of issues we've been dealing with on that front and Noelle has born the brunt of that storm that never seems to blow out. Another source of stress is that her dad died from cancer 21 years ago, and she has always been worried that I would die from cancer as well. Now I have it and the 65-80 year old people who typically are the ones who get my kind of cancer don't tend to fare very well following the allogeneic transplant. Granted, they have a lot of peripheral health issues that complicate their recoveries and make various of their bodies' systems good targets for the graft vs. host disease (GVHD). So, unfortunately, there's not a lot of data available for how 40 year old people do when they have no health concerns other than the cancer. Also, there are the financial concerns. We're at a point where there just isn't anything after the bills are paid. She stresses about that all the time. All of this just became really evident to me and I saw my strong, amazing wife on the verge of crumbling a few times. I thought about us moving on to my second transplant which involves about 4 to 6 weeks in the hospital and little or no relief for Noelle at home. The thought of going into that without Noelle having a break or any relief before that really frightens me. I began thinking, How can I give her a break and get her away from all of this for a time? What can I do for her when I have no money? And then it came to me. Noelle has enough women who love her that I'm sure I can find a way for someone to take her away for a couple days of relief and relaxation. I contacted her closest friends and have now arranged for her best friend, Linzi Crans, to fly out from California and take her up to her sister's house about an hour north of us in Perry, UT for a few days. Thanks to her wonderful friends, her sister and my mother, Linzi's airfare is taken care of. The love of my life will get the break she so desperately needs. I'm so excited for her to be able to go. Every time Noelle gets to spend time with Linzi, she is refreshed and revitalized like giving water and sunlight to a withering plant. It's the perfect remedy. 

A Weekend with "The Guys"

That was fun.

I met Mike Myatt and John Lang in 5th grade. John and Mike had known each other since kindergarten, but they welcomed me into their crew anyway. In 7th grade, we met Steve Gutteridge, who had gone to a different elementary school. His wacky sense of humor fit right in with Mike's, John's and my own, so he quickly melded into our group. In 9th grade, a new kid named Tim Thompson moved into town and Rincon Valley Junior High. It was clear pretty quickly that this kid was our kind of guy, and he joined us in our shenanigans. Thus is the genesis of the core group of "The Guys." By high school, I could tell my parents that I was going out with "The Guys" and they knew exactly who I meant. We share many very deep and abiding memories from our school days. Notice that I didn't use the words "poignent" or "deeply meaningful." Granted, there were some of them, but most were just memorable because we always had a TON of fun together.

Well, a few months ago, I was talking with Mike on the phone, and he said he'd like to come out and visit me. Of course I told him I'd love a visit. Well, within a couple weeks of that call, Mike told me that Steve, Tim and John all wanted to join him. Sweet. I was thrilled. We ultimately decided that my my at-home post-transplant recovery would be the best time for their visit. Once the date for my transplant was scheduled, we were able to schedule their visit. They got into their hotel late Friday night, and we spent the majority of Saturday, Sunday and Monday together.

We had snow Friday, so when they got here on Saturday morning, they immediately went to work pelting each other and shooting baskets with snowballs before even coming to the door. A couple of my kids were watching through the front window and got an early impression of what The Guys were like. Remember, these are Northern California kids who don't see much snow during the winter unless they take a trip up to the Sierras (except Tim, of course, who lives in Reno and sees plenty of snow). I gave them a tour of the house and then, because the kids had commandeered the TVs and video game consoles, taught them the joys of Ticket To Ride (TTR), one of my and Noelle's favorite games. We had lunch and made a Starbucks run to help keep them all awake after their long and exhausting drive in from San Jose, Santa Rosa, Sacramento and Reno on Friday. The weather was warming up a little, so I decided to take them for a walk on the Jordan River Parkway. That's one of our family's favorite spots and where we had our family pictures taken last October, the Saturday before I began chemotherapy. According to Google Maps, we walked about 2.1 miles Saturday, and I was pretty tired by the time we finished. The Guys bought us dinner -- take out from Cafe Rio, our favorite Mexican restaurant here in Utah. Gratefully, it tasted good to me and I ate about 2/3 of my big salad. I impressed myself, as my appetite has not been very big since returning from the hospital. We capped off the evening playing a card game called Five Crowns.

Sunday was our Easter program at Church, as our stake is having Fast Sunday on Easter with General Conference the first weekend of April. Our family decided to fast this Sunday, though, so our kids can enjoy Easter treats on Easter morning. Anyway, I went to Sacrament Meeting with my family and my wonderful mask that makes my face sweat after 10 minutes. Abby had a solo with the choir and I had to be there. The guys came at 12:15, just as I was walking across the street to my home. We played video games and foosball until the family got home, then left the four younger kids with The Guys while Noelle, Abby and I went to our stake Patriarch's home so Abby could receive her Patriarchal Blessing. That was a beautiful experience. We got home to find that the four younger kids hadn't even missed us and probably would have been just peachy if we hadn't returned for several hours. They love The Guys. We had our traditional early Sunday dinner around 3:30. Noelle made her shredded barbecue chicken in the crock pot. Put that over rice with some peas on the side...yum. Once again, I surprised myself with how much I ate...and I hadn't even been fasting. It was the first time in months that I had seconds. Granted, my two portions were a bit smaller than what I would consider a "normal" serving for me, but it definitely marked progress for me. After dinner, the kids all went upstairs to watch movies, and Noelle and I taught The Guys the card game that has been a Mann/Philpott family tradition for years. It's called "Butt Man." We had fun and were able to keep our friendships intact...just barely. =0)  I was pretty beat and worn out after all we had done and the long walk on Saturday. I began yawning some time between 5:00 and 6:00. I decided to call it a night around 7:30. I was in bed a little after 8:00. Unfortunately, I wasn't able to fall asleep until almost 11:00. I just had trouble turning off my brain.

Yesterday, The Guys picked me up around 11:00 a.m. and we headed off to Temple Square. There were virtually no missionaries to be found to provide us with a tour, so I became the tour guide for the day. I was able to answer a lot of questions they had about the Salt Lake Temple, temples in general, family history and the sealing of families for eternity, the priesthood, LDS Church leadership, General Conference, and several other topics. We enjoyed -- really enjoyed our lunch at Kneader's, which is in the mall across the street. Here are some pictures from Temple Square and the Conference Center.

It was a great day to finish off a great weekend. I'm so glad they all made the trip. Spending this time with Mike, Steve, Tim and John was good for my soul. I hope it was good for theirs, as well.

Feeling Better Every Day

The last several days have been pretty good, overall. My energy levels and strength continue to improve, and I'm eating better, too.

Yesterday, though, was a weird "off day." I had a clinic appointment at 8:30, which meant that Noelle couldn't take me. That's right when she's taking the kids to school. My brother Jeff was able to drive me to the hospital, as he works downtown. But he has to be at his office by 8:00, so he picked me up at 7:15 and got me to the clinic around 7:45. I woke up a couple hours before normal, which may have set things off. As I got out of Jeff's car at the hospital, I started to feel a little queasy. I checked into the clinic and had blood drawn for lab work. After that, I was ushered into Room 1 to wait for the nurse to change the dressing on my central line. I began to take my morning meds, and couldn't finish. My queasiness turned into full-fledged NAUSEA. I ran down the hall and made it to the clinic bathroom just in time to say a prayer to the porcelain god. Up came my breakfast and the pills I had just taken. A couple hours later, as I was meeting with Dr. Miller, my pain specialist for my neuropathy, I had another wave of nausea hit me and had to excuse myself and run to the bathroom to throw up again. Then, at dinner last night, I ate a baked potato and on my last bite the nausea hit me again. Back to the bathroom. All day, the only things I was able to eat and keep down were a couple cans of Sprite, a little rice and an apple without the peel. Gratefully, I'm right back to normal today.

What have I been doing with my time? Well, not working every day does give me some time I'm not used to having. I continue to walk a mile or more each day, weather permitting. I've finished reading the biography of Thomas S. Monson and the 9th and final volume of The Work and the Glory. Now I'm reading The Help. Noelle and I watched the movie before I went into the hospital, and I decided I wanted to read the book. I'm just a few chapters in, and it's really well written. I'm reading the scriptures more than I'm used to doing, which has been a lot of fun. I also have some goals with my music. The Church allows composers and arrangers of music to submit their music for consideration to be included in an issue of the Ensign (the Church's monthly magazine for adults) or to be put on their music website. It's been nearly 30 years since the Church released a new edition of the hymn book used in Church meetings. I would imagine that some of the best that have been submitted over the last several years will be included in the next edition. The annual deadline for submission is March 31st. I submitted the hymn I wrote on my mission: The Time is Now. Who knows? Maybe It'll be selected for something. Later this year, I also plan to publish a lot of the arrangements I've done over the years. I've got plenty of time to work on new arrangements, too.

My lab results all looked good yesterday. I just need to work on getting and staying healthy and strong. Rachael, my care coordinator, says that we're still waiting for blood samples from the first several potential donors. Finding a donor may take a while, so I have some time to get stronger and figure out how to eat more than I'm eating now.

Nothing else of real interest to report for now. I'm getting really excited for the visits of "The Guys" from high school (Mike Myatt, Steve Gutteridge, Tim Thompson and John Lang) this weekend, and my older sister, Christy, next week. I'm glad I'm feeling well so I can enjoy their visits.

At-Home Recovery Begins

I've been home now for a little over five days now, and I'm getting stronger every day. This evening, I even drove (for the first time in about a month) to pick up Abby from her friend's house. I'm nowhere near full strength, but every day I seem to have a little more than the day before.

The weather this week has been really nice. The week started with temps reaching into the low 50's with a mild breeze, but yesterday we reached 76 degrees. It was absolutely gorgeous. On Thursday, Noelle and I ate lunch in the hammocks in the back yard, then laid there for a couple hours. It was pushing close to 70 degrees and absolutely divine. I could have stayed in that hammock all day. It's going to be cooling off a lot over the next few days, and we're supposed to get some rain with temperatures only in the 30's and 40's. Winter's not ready to yield fully to spring quite yet.

As part of my recovery regimen to get myself stronger, I've been going for walks every day since getting out of the hospital. A walk around our block, including walking a court behind us is 0.6 miles. I've also mapped out a 1 mile loop through the neighborhood. Noelle and I have taken two walks a day all week except today, when I walked alone. I've walked 1 to 1 1/2 miles every day this week. Aside from getting me out in the fresh air and strengthening me for my health and recovery, it's also preparing me for the 5k we'll be walking the day before Easter, just two weeks from today. I need to be sure I can walk that far by then. I have a way to go, and the days we're going to lose to rain aren't going to help.

I'm eating alright. I've only had to take anti-nausea meds three times this week, and haven't thrown up since dinner on Monday night. The problem is I'm not eating enough. My stomach shrank a lot over the two weeks that I was on IV nutrition at the hospital, so I can't eat a lot at any one sitting. Anything fatty coats my mouth with a fatty film that absolutely disgusts me, so even Noelle's famous chocolate chip cookies don't appeal to me because of the butter that's in them. It's awful. Also, my appetite isn't what it used to be. At lunchtime today, for instance, I craved one thing and started preparing it. By the time it was ready, the thought of eating it made me sick. Noelle offered me about 50 different options, but nothing sounded good to me. I finally accepted a peach smoothie she had made and had trouble finishing all 14 ounces of it. I'm now down to about 207 pounds. I've got to find a way to stop the weight loss!

Anyway, I'm loving being home and with Noelle and the kids all the time. I've had time to catch up on a lot of reading that had been neglected, and that feels good. I have some other projects that will get some attention in the coming weeks, as well. Right now, though, the project I'm most interested in is getting some good sleep tonight. Good night.

Home at Last

I'm home.

I was discharged from the hospital yesterday afternoon around 4:00. Here's a picture of me signing my discharge papers. That was a nice moment. =0)

I'm so happy to be home and able to sleep in my own bed and eat food I would typically eat. It's great to have my kids around me. When I got home, there were a bunch of "Welcome Home" signs from them. Probably the best part of being home is having Noelle around me (like she was in the hospital), but having her have the ability to do what she needs to do during the day. Oh, and cuddling with her as we went to bed last night was pretty nice, too. =0) I didn't get that in the hospital.

I've picked up a cold somehow. I've got the sniffles most of the day, and last night I was all stuffed up and had some pasty stuff in my mouth and throat. There's a minor cough, too, but gratefully I'm not coughing up a bunch of gunk and there's no fever. I'll just be careful and keep myself warm and comfortable so the cold can run its course but not get much worse...I hope.

As you might imagine, my bed is MUCH more comfortable than was my hospital bed in Room East 808. However, because they were pumping a sodium chloride "maintenance fluid" into me via IV the entire time I was there, I had retained some fluids. Last night I was up every couple hours to pee and shed those extra fluids. After shedding them, I decided to weigh myself this morning out of curiosity, and found that I've lost about 10 pounds over the 21 days since entering the hospital...down from 219 to 209. Cancer and it's related treatments are not meant to be a diet plan (I've been told that several times by my doctors and my Care Coordinator, Rachael), but there's not a lot one can do when they're nauseous and throwing up an average of once or twice a day for the better part of three straight weeks.

Noelle and I just took a walk around the block. It's just over 1/2 a mile walk. On Saturday, March 30th (Isaiah's birthday and the day before Easter), there's a 5K in Draper we're going to walk as a family. It's to benefit the Leukemia and Lymphoma Society. If any of my friends in Utah would like to walk it with us, the information is here: http://race2conquercancer.com/. Scroll down a little until you see the line that reads: 5K Fun Run/Walk - March 30, 2013 at 11 am. It will be fun and we'd love to have a whole "team" walking with us. Let me know if you have any questions or if you would like to join us. Thanks for considering it.

Cancer is not a death sentence. It's an opportunity to dig deep and see what you're made of. It's an opportunity to lean on the friendships you've been privileged to develop over your lifetime. It's an opportunity to reach Heavenward and deepen your faith in our Father in Heaven and our Savior, Jesus Christ, and feel their love and strength sustain you. Whether a cure comes or not, cancer is an opportunity to become a better and more richly blessed individual. At least, that's been my experience.

Auto Transplant Day 16

OK, so I'm posting before the end of the day. What's up with that? Well, this morning, I was given clearance to go back onto a food diet - low microbial, so no grapes, pineapple, etc, and also light on dairy products, as they can be kinda tough on a stomach that hasn't had real food in it for a while.

Also, I was told that I can go home tomorrow afternoon IF I can avoid puking and IF I can eat enough calories to show that I won't starve without my TPN (IV nutrition). That's the best news ever!!! Tomorrow will be my 21st day in the hospital this time around, so even with the typhlitis, I'm still on the short end of what was anticipated for the length of this inpatient stay.

My nausea has been under control. When I brushed my teeth this morning, though, I gagged a bit and almost threw up. I don't know if they would count that, but I don't think I'm brushing my teeth tonight or tomorrow morning. Before you get grossed out by that, just consider the old adage  "Desperate times call for desperate measures." I can't afford to have something like that force me to stay here any longer. I think I've eaten enough calories to get me out of here, too, but I'm not taking any chances. I'm eating as much as I can stand without going overboard.

So, some of my hair apparently wasn't/isn't falling out. I've been growing some hair on top of my head, so I'll have to ask a friend of mine in our ward (Matt Moore) the best way to shave a head regularly, as his head is almost always clean-shorn. Also, some of my facial hair is growing in, though much, much slower than usual. As with the top of my head, there are patches where it's not growing back, though, so I'll need to shave every few days until it looks like it's done trying to grow.

Noelle spent the majority of the day with me, and her sister, Emily, brought the kids around 5:00. We took a walk and the kids had fun with the little blue face masks. Jenna had to wear one because she might have a cold. It may just be allergies, but who can be sure? So after she put one on, the other kids (except Abby) all wanted one. I think they'll end up in the chest of dress-up clothes.

My former stake president and his wife, Doug and Cecile Scribner, are probably going to come by tomorrow around lunch time to say hello and chat for a while. It will be nice to see them. Doug was Stake President when I left on my mission and when I returned. Here's a funny anecdote... After my exit interview with President Scribner, and being told by him to remove my name tag that had identified me as a commissioned representative of Jesus Christ for the previous 24 1/2 months, I was pretty depressed. We walked out of his home office and into his living room, where Cecile and my parents (long-time friends) had been talking. Sister Scribner said to me, "I understand your girl friend is at your home waiting for you. I can tell you're upset, so let me tell you what you need to do. I want you to go home and make out with her." After two years of not even hugging a female, that was quite the counsel to hear. BUT... I trusted and respected Cecile, as she was the mother of one of my friends, and I knew her well. So, what else could I do? I had to follow her counsel. I went home and made out with Noelle. Five days later, we were engaged, and eleven weeks after our make-out session, we were married. I guess Cecile knew what she was doing. =0)

Anyway, that's it for today. Hopefully, my next post will be written from home. =0)

Auto Transplant Days 14 and 15

Good days. In an effort to decrease my nausea, the doctors took me off of two of the three "broad spectrum antibiotics" I was on, and it has helped tremendously. My nausea is at a minimum and I'm able to drink without any problems. After being told I couldn't have any more to drink (or eat) because I was still throwing everything up a couple days ago, I've been allowed to work back up to drinking "clear" liquids - that's anything you can see through, as my doctor described it. So, I've been drinking water, Snapple, Sprite, chicken broth, apple juice, and eating jello. My nausea is completely under control, and I feel ready to take the next step tomorrow, which would likely be a full liquid diet - that's anything you can drink (or eat, if it's a liquid until it's refrigerated or frozen). Hopefully, my doctors see no reason to not advance me to that step at least. The next dietary step would be a full diet. They need to see that I can consume enough calories on my own without the TPN (IV nutrition) they've been giving me before they can/will send me home. So, if all goes well, I'll be going home on Tuesday or somewhere around there.

It was kind of cold and windy, but Noelle got me to go outside for one of my walks today. The sun was very bright, as you can see from my squinty eyes in this picture.

My pain from my typhlitis is completely gone, though I still have diarrhea. That should be helped with a more solid diet. We'll see.

I really don't know what else to report. I'm still as stir crazy and anxious to go home as ever, but living with the reality of the situation. One day at a time...