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...

Auto Transplant Days 12 and 13

Yesterday, my counts were awesome in the morning - 4000 white blood cells and 2100 neutrophils.  Because of that, they decided to stop giving me my Neupogen shots. I was okay with that. So, when my nurse and PA went into "rounds" with the doctors, I asked them to lobby for me to take a walk outside while the weather was nice during the day before rain came in over night. As I've mentioned, I've been stir crazy, and I figured a walk outside could help me with that. Well, the walk outside was approved by Dr. Konopa, and it was litterally "just what the doctor ordered." It was about 58 degrees with a stiff 20 mph wind, but man, it felt soooooo good! Here's a picture of Noelle and I enjoying the sunshine.

Other than that, yesterday was a big day, because in the morning, I was visited by the PA for the surgeon who's been guiding my recovery from typhlitis, including what I can and cannot eat and drink. He said, "Okay, let's have you go to a full liquid diet from the "sips of clears" you've been doing since yesterday evening." I was thrilled. Progress is good. So, throughout the day, I had some water, jello, chicken broth, sprite, ice cream (yes, a liquid...think about it), a bite of AWFUL soup. I didn't eat a lot, but I had some and I felt good about it. Then, in the evening, Dr. Kim (the surgeon) came in and told me that I could go to a full food diet now, but to take it easy - don't go straight to burgers and steaks. When he said that, my stomach turned, and I told him not to worry about it. 60 seconds after he left, I was puking my guts out. Fun! I told my nurse to track down Dr. Kim. He did, and Dr. Kim rescinded his earlier directions, and took me completely off of foods AND liquids! Ugh! Back at square one!

Last night, I finally got some decent sleep. Not good, mind you. Decent. That was a welcome change of pace. I did throw up a couple times, though. Once, I got up into a sitting position to put on my slippers and go to the bathroom, and that was all it took. I was grabbing for my barf bucket and letting out all of my stomach acid. So much fun. Then, after my 4:00 a.m. labs were drawn and I got up to go to the bathroom again, the same thing happened. Wow. Not fun and not fair. If I could just figure out how to stop puking and keep my food down, I'd be out of here. Oh, well.

Today's been pretty uneventful. No more puking, except for when I gagged on some toothpaste foam when I was brushing my teeth, but I don't think that really counts. Noelle and I finally finished Cast Away. We played Yahtzee. This evening, Dr. Kim came in and said we'd give things another try and graduated me to sips of clears. We'll see how that goes. That's about it for today. Good night.

Auto Transplant Days 8 - 11

Let's see if we can't get caught up today...

March 2, 2013: Day 8
OK, so the inflammation in my lower-left abdomen is causing some concern for the doctors. I had a CT scan of my abdomen done today (though I barfed up about 80% of the radioactive lemonade stuff), and what it shows is some inflammation of the walls of the large intestine near the colon, called typhilitis. The concern is that if a perforation (or hole) in the intestine wall happens, then there'll be gas and fecal matter in parts of the belly that have no way of fighting it...especially with my white blood cell count at ZERO. I have no immune system right now, no way of fighting off infection other that the antibiotic, antiviral and antifungal medicines they're pumping into me more than once a day. The bowel surgeon says it could put me into a life-and-death kind of situation. We need to ensure the inflammation doesn't get any worse, so I'm on "bowel rest." No food. No drink, except the bare minimum to take my pills. End of story. That's the news for today.

March 3, 2013: Day 9
Sunday morning, I was awoken a little after 6am and told I needed to have a platelets infusion. I figured that if it had to happen at THAT time of day, it must be important. As it turns out, the time of day was perfect, because after the hour and a half-long infusion was finally over, I was then told I also needed two units of red blood cells, as well. So, they hooked me up and we were back off to the races. After church was over, Noelle brought the kids and we hung out for a while, took a few laps around the unit, and took this picture:

I love how Isaiah is leaning on my leg. =0)

Michael and Abby both had very mild sniffles, so they kept their distance as best as they could to protect me. Poor kids. A couple of them were pretty excited to see the stuff hanging from my "IV tree" with blood in it from the transfusion. Anyway, after their visit of about an hour and a half, they took off and I received yet another infusion of platelets. Even though I'm not allowed to eat or drink anything right now, I was hungry all day. I don't know if that's a "good sign" or if it just means that I'm tired of not eating anything. I went to bed pretty early Sunday night.

March 4, 2013: Day 10

Ok, so yeah, I say Day 10, but it's really Day 14 in the hospital. I'm tired of so much about this whole thing...tired of not having energy...tired of not being able to eat what and when I want...tired of throwing up all the time...tired of diarrhea every day for over a week. (Sorry for those of you who are reading this and thinking, "why did he have to mention that?" Remember, it's my blog, and I'm writing it for me, not you.) Good news for the day: my white blood cells have finally shown signs of life. They're at 200. My neutrophils are only at 4 (they need to be at 500 before I get to go home), but both numbers should be taking a nice move forward tomorrow. A couple days ago, they began to give me daily injections of Neupogen to help my white blood cells make the comeback we need. Neupogen, as you may recall, is something my body responds well to. It's what I got over the several days leading up to the collection of stem cells - remember we were able to harvest 5 million stem cells from my blood without ever having to add the drug that's specifically designed to have them release into the blood stream. It was the Neupogen that did that for us. So, we have high hopes for all of my counts making a strong comeback over the next few days. That will help me fight off my bowel infection, too.

March 5, 2013: Day 11

This morning, my night nurse came in with my day nurses just to gloat (playfully) about how wonderful she is. You see, she's taking credit for the huge jump in my counts. My white blood cells are at 1000 and my neutrophils are at 500 this morning. That's a big jump, but we're still not quite where we need to be to check that part of things off of the list of what needs to happen to get John out of the hospital.

I have been absolutely stir crazy the past couple days...no joke, out-of-my-mind stir crazy. I have lost my patience and my ability to focus on anything for very long. For example, in one hour's time today, I went from playing a game with Noelle, to watching a movie ("Cast Away", with Tom Hanks), to playing Wii, to taking a walk to playing a game again. Noelle is being as patient with me as she can, but I know I'm driving HER crazy with my constant let's-not-do-this-anymore-let's-do-something-else behavior. She's so good to put up with me.

So, after not being allowed to eat or drink anything over the past several days, aside from a little water to take my meds, today I've been allowed "sips of clear liquids" (water, juice, Snapple, Sprite, etc.). We're trying to move gradually towards where my body can handle food again, but we're taking it by degrees. After this, I should be allowed a full liquid diet, then simple solids, then full solids. That's sort of the path we need to be on. The question is, will my body cooperate?
I think it will. One way or the other, Dr. Kim is the surgeon who is in charge of when I get to progress on that path. He's also the one who would perform the surgery on me should something go backwards from where we are now.

I have no more pain in my abdomen, which is a great step forward. That suggests that my new white blood cells and neutrophils are helping to heal my typhilitis, which, in turn, suggests that I should be able to eat and drink without trouble soon. Dr. Ford, who pioneered the BMT program here at LDSH, says he hopes to get me out of here "in the next few days."

Today, I said goodbye to Devin Holt, a nursing student who has been doing his "capstone" nursing here to finish up his degree requirements. Good guy. I'm sure he'll land somewhere great when he's done with school this spring.

One last thing...I have confirmed that my hair has indeed begun to fall out. It's time for a shave...

Well, that will actually wrap up this post...finally. I know it's been a long one, but I'm trying to be as detailed about my hospital stay as possible.

Auto Transplant: Days 2 - 7

These days could rightly be summed up with one work: NAUSEA. Sure there are/were some other aspects of these days that will be discussed, but the under-riding current is one of nausea and abdominal cramps for yours truly.

February 24, 2013: Day 2 (This is now Noelle typing for John) - Happy Sunday to me! This evening, Noelle brought 4 of my 5 kids to visit me. Michael couldn't come because he has the sniffles. It was nice to talk and walk with them and help them feel at ease about where I am and what I am doing.

This is me with Abigail, Emma, Jenna and Isaiah.

February 25, 2013: Day 3 - My nausea continued to increase and made it hard to keep my food down. My energy levels were in the dump and unfortunately, there hasn't been much relief for either problem since then. Because of my difficulty eating and keeping food down then started me on TPN. I don't know what it stands for, but the "N" is nutrition and it is giving to me via IV. Gratefully I have avoided mouth sores, to this point at least, and hope that trend continues. My blood cell counts continue to fall towards 0. 

February 26, 2013: Day 4 - I am beginning to understand why Rachael, my Care Coordinator, said that this week would be my hardest in the hospital. I'm on a rotating merry go round of nausea meds, given every 3 hours by IV. My interest in food has basically disappeared and most of that is because I don't want to throw up. I don't know of anyone who enjoys it, but throwing up is my least favorite thing to do. 

February 27, 2013: Day 5 - Today we met with Dr. Miller again. He is a pain and rehab specialist. Last week he prescribed for me a new drug called Tramadol. After a week of taking Tramadol with the Gabapentin (which I've been taking since late-December or early January) my neuropathy pain level is typically at a 0, as compared with my typical 2 to 6 pain range with Gabapentin alone. Hallelujah!!! You think I'm happy about that? Darned tootin! I basically ate nothing today, as my TPN takes care of my basic nutrition and makes it easy to avoid nausea issues caused by feeling responsible to eat. 

February 28, 2013: Day 6 - Not a whole lot to report. I have been taken off of the oral version of every one of my meds for which there's an IV alternative. That SHOULD help me avoid vomiting so much. Still no mouth sores! I'm pretty much scott-free on that one if we can make it to when my neutrophils and white blood cells really start to make their comebacks, and that's still a handful of days away.

March 1, 2013: Day 7 - my lack of a responsibility to eat has turnied into a lack of desire to do so. I've also begun to develop a pretty sharp pain in my lower-left abdomen, which can make it pretty hard to sit, stand, walk, or even lay down.Well, John...isn't that about everything? Yes. Yes, it is.=0S The pain isn't really that bad on a pain scale, but it's sharp and it's constant, which make it worse. We had an x-ray taken of my abdomen which showed nothing.. So, if the pain continues over the next few days, we'll try a different avenue of analysis.

Auto Transplant: Day 1

Goals for the day:
- Shave and shower - check
- Get up and go on walks around my unit - two down, one or two to go.
- Reduce or eliminate nausea - Adavan and Compazine are being employed for that.
- Increase my appetite - Merinol is the choice there.
- Decrease water retention - I've been retaining water like crazy since getting here on Tuesday, to the point that I've added about 8 pounds in weight.For now, they've decided to take me off of my "maintenance" saline solution that they have constantly had dripping into me since getting here.
- Bump up my immune system. I've spoken about IVIG in previous posts, and they'll be giving me some of that in the next few minutes.

I'm constantly tired and that's a bummer, cause I don't like to just sit or lay around all day long. But it's expected, because I was just reborn yesterday. I have a great team of doctors, nurses, aides family and friends who will come and lift my spirits and force me out of bed to go on walks and play games, etc. Anyway, they've put some Benadryl in me for my IVIG infusion, and it makes me groggy. I can't think straight, so I'll end this now.

Auto Transplant: Day 0

Happy rebirth-day to me! This morning a little after 11 a.m., I received my first stem cell transplant. I'm exhausted, and the worst is yet to come. I still have to walk a bit into the valley of the shadow of death over the next several days before I can come back to where I want and need to be.

Oh! Yesterday, I received a plant - well, actually a cactus arrangement - from Onset Financial, who has been my employer for the past 13 months. It came with a nice note that says, "We are thinking of you and wishing you the best. - The Onset Financial Family" I thought that was a very nice and unexpected gift. Unfortunately, I can't have plants in my room, but it's at the nurses' station so every time I do laps around East Eight, I see it and am reminded that they care.

Well, that's about it for me for now. Like I said, I'm pretty exhausted. More later.

Autologous Transplant, Days -3, -2 and -1

The day of my actual transplant (tomorrow) is considered "Day 0" so the three days leading up to it are Days -3, -2 and -1.

Tuesday, February 19: Day -3
I got settled into my room and hung out with Noelle for the day. I took some time getting the staff up to date on the levels of meds I've been taking and the schedule I've been on. For example, I have a medicine I've been taking for my neuropathy that has to be ramped up at the rate of one pill every three days until relief is found. I had gotten up to two in the morning, two in the afternoon and three in the evening. My PA, Dan, explained to me on Tuesday that that medicine works best when all three doses are the same quantity, He has remedied that situation for me. The problem is, they can make you sleepy until your body adjusts to the new dosage. And, he decided to up my dosage by two pills a day right away as opposed to one and then another 3 days later. I've been feeling it today in particular. My chemo began at around 4:00 on Tuesday. It's about a 20 minute IV drip, and it's been found that sucking on ice or popsicles for about 5 minutes before the chemo, all during it, and for about 30 minutes after reduces the chances for GI tract sores, which has been my greatest concern with this chemo. Bad sores in my mouth and throat, stomach, intestines...the whole shebang  The reason the cold stuff can help reduce the chances for sores is because the cold causes the cells in the mouth to close up a bit so the chemo med can't soak into them as much. Anyway, I went through 3 Italian ice cups, 2 popsicles, an ice cream cup and some ice pellets. By the time those 55 minutes were over, I was sick to my stomach with all the sugar and ice, and vowed to come up with a different plan for the following day. Other than that, the day was pretty uneventful.

Wednesday, February 20: Day -2
Hiccups. Lots and lots of hiccups. One of the meds they're giving me is a steroid called Dexamethazone (or "Dex). It was a part of the 4 cycles of chemo I did from October to January, and it almost always gave me hiccups in the evening, after having taken them in the morning. Well, I got the Dex on Tuesday afternoon, and the hiccups began at around 10:20 in the morning on Wednesday. I asked for Baclofen, a pill that has helped to get my hiccups to subside a little in the past. Well, this time it didn't work. Maybe it's because they gave me the Dex in liquid form in stead of the solid form I would take at home. Maybe it was a larger dosage. Maybe it's because it's been a month and a half since I last had any Dex in my system. Whatever the cause, the hiccups stayed with me for 5 or 6 hours! Crazy! That's a record for me. I think the longest bout I've ever had was about an hour, so this was pretty crazy. They ended up giving me a different med for my hiccups called Thorazine (I think). That helped. Also, I met with Dr. Miller Wednesday. He specialized in rehab and has prescribed a new medicine to help me with my neuropathy, in conjunction with the med I've been taking since January. I've already gotten some good results from it, which I'm VERY excited about. Here's hoping it continues to help, because he explained to me that damaged nerves heal at the rate of about one inch per month. Of course, my feet are further away from my spine, which is where the regeneration and healing of the nerves begin. He figures it'll take about 2 years or so for the healing to reach my feet. Like I said, here's hoping the new medicine continues to help. I got more chemo at 4:00, and put down a Jamba Juice Noelle had picked up for me on her way in expressly for that purpose. So, Jamba Juice, one popsicle, and grape juice poured over ice pellets. Still a lot of sugar like the day before, but not as sugary, and still cold enough to help...we hope. A dietitian met with us yesterday as well. She's asked me to consume at least 2200 calories a day with a lot of protein. That's a tall order, when I have a bad sense of taste and not much of an appetite. Also, a bit of nausea set in yesterday, making it all the more difficult to get up the gumption to eat. It settled down, though, and Noelle and I were able to play a game of cribbage before she left for the day. Overall, it was an OK day, untill...

Thursday, February 21: Day -1
After getting to sleep some time around midnight, I woke up at 3:05 and had to pee. They also draw blood for labs every morning between 3 a.m. and 5 a.m. (I know...what an AWFUL time choice, huh?), so I figured that I would call my nurses (one LDSH employee and one nursing student from Utah State University) in to get that taken care of while I was awake. So after peeing, I came beck to lay back down. As soon as I sat down on the edge of my bed, I knew I was in trouble. I went right back to the bathroom and threw up. I hate throwing up...with an absolute passion. Granted, I don't know of anyone who really enjoys it, but I hate, hate, HATE IT! And this was awful. So, I get back to bed and call the nurses' station to let them know I wanted my blood drawn and some anti-nausea medicine that they could shoot into the tube running into my central line. They came, they did what I had requested, and left. I sipped from my water pitcher for a while, and then out of the blue, I felt another wave come over me. I ran the four feet to the bathroom and still made a mess of it...didn't quite get to the toilet in time to keep the floor clean. after I was done, they brought in housekeeping to clean up for me. What a horrible job! I can only imagine the messes they have to clean up around a hospital. This morning, after waking up around 8 a.m., I threw up again. Yes, it was a tough morning. They've loaded me up with a lot of anti-nausea meds today, and I've been able to eat a bit, but not a ton. Noelle and I played Skip-Bo (why the heck would they choose that name for a game? I mean, really, what the heck is "Skip-Bo" even supposed to mean?) I won, not that it matters. We also watched the first three episodes of season 1 of LOST. It's been a long time since we've watched it, so it's good to get to know the characters again. It's definitely one of our all-time favorite shows we've watched together. Mad About You, Chuck and Modern Family are others. Anyway, I'm really tired from the combination of meds they've given me for the nausea, so I'm going to wrap this up. I'm going to try to blog more regularly while I'm here in the hospital, as the days tend to run into each other and the lines get blurred.

Tandem Transplant

A couple weeks ago, on January 31, Noelle and I met with Dr. Asch, who is one of the doctors in the BMT program. The primary purpose of the meeting (as far as we knew going into it) was to discuss the stem cell collection process. We only discussed that briefly, and then she told us there was something else we needed to talk about. Then she asked if we had ever heard of a "tandem" transplant. Noelle and I had read an article a friend had sent us a few months ago about a man with Plasma Cell Leukemia who had had a tandem transplant, though we couldn't recall all of the particulars about it. We've known all along that I would ultimately need two transplants. The plan has been to go through this first (autologous or "auto") transplant next week, wait until the cancer comes back, and then start the chemo process over again and do the donor (allogeneic or "allo") transplant. Dr. Asch said that for a few key reasons, she and the other doctors on East Eight have decided to recommend that we change the plan and do a tandem transplant. The tandem transplant process is basically doing the two transplants much closer together, and not waiting for the cancer to rear its ugly head again. Ideally, the allo transplant would be done 30 to 60 days after the auto transplant.

Now, as for the reasons they advise this...

• Waiting for the cancer to come back requires going through some chemotherapy cycles again in preparation for the allo transplant. Every time chemotherapy is introduced to a person's body, the body learns about how that chemo works and has a chance to learn how to resist it's effects on the cancer. That means that going through the chemo process again may or may not be as effective as it was the first time through. On the other hand, with the tandem transplant, the need to go through a cycle or cycles of chemotherapy before the allo transplant is eliminated, and we can go straight into the hospital, have the high-dose chemo to wipe out my marrow and move ahead full-bore.
• Another big reason to move forward with the allo transplant quickly is that we avoid the need for what is called "maintenance chemotherapy." Maintenance chemo is lower doses of one or more chemo drugs given after recovery from the transplant to help keep the cancer in remission. In my case, the drug used for Multiple Myeloma patients is Velcade. Velcade is the chemo drug that has caused the neuropathy in my feet. My doctors are still hopeful that I will be able to enjoy a full recovery from my neuropathy symptoms over time. On the other hand, those chances decrease dramatically with the administration of any more Velcade.
• Lastly, my chances for long-term survival increase with the tandem transplant. My cancer is very aggressive and carries with it a very low survival rate. Any increase in survival rate is welcome and adds a measure of hope and comfort.

I do not want to go through chemotherapy again if I can avoid it. I do not want my neuropathy to increase or get to the point of becoming incurable. I do want the best possible chance of adding as many years to my life as possible. The way I look at it is this: I died the day I received my diagnosis. Every day since October 4, 2012 is a day added to my life. Chemotherapy has added these past four and a half months to my life, but without the stem cell transplants, I will die. The auto transplant has the capacity to add a couple years to my life, but not to provide a cure of the cancer. The allo transplant, whether done sooner or later, may kill me, but it's a chance I'm willing to take for the capacity it has to provide a cure of the cancer and add several years, or perhaps even decades to my life. If receiving the auto and allo transplants close together increases my chances of reaching into the realm of decades, then it's worth giving up the possibility of having a year or two of remission with a high quality of life between transplants to get those decades. 

The decision to accept our doctors' recommendation did not come easily. Noelle and I fasted and prayed about it for over a week before feeling the Holy Ghost confirm to our hearts that it's the right thing to do. With the confidence the Lord has given us, we are moving forward in faith on this revised path. Nothing has changed with the course of action for the next several weeks. I'll still be in the hospital for 3 weeks or so, then convalesce at home for several weeks to regain my immune system and my strength. Then, likely in the second half of April, I'll go in for the second transplant. That process will be very similar to this one, with a couple days of chemo to (again) clear out all of my bone marrow, then a day of rest, then the transplant and recovery. There is a big difference in the amount of time required for the recovery, however. I'll probably need 4 to 6 weeks in the hospital, then about a year to recover sufficiently to return to work.

Yes, you read that right. I won't be able to work for the next year or so. This past Thursday, February 14th, was my last day of work for the foreseeable future. Resigning from my job was a difficult thing to do without another job waiting in the wings. I've resigned from other positions before, but it's always been for the sake of a better job. Now it's for the sake of taking care of myself. I've never before made plans to be without an income for a year. Noelle and I are working through things to make that possible. We receive a monthly stipend from Sacramento County for the four children we adopted, but we've never been in a position to have to live off of it. We thank Heaven we have it, of course. But to make things work, we'll have to cut WAY back on our monthly expenses. We paid off Noelle's Suburban with our tax return, so that will save us a good chunk of change on our monthly expenses without that car payment. Also, and this hurt...I sold my car on Friday night. After discussing it together, it made so much sense. I won't need a car for work for at least a year, and I won't really have the strength or energy to drive for the majority of that time anyway. We were only 9 months away from paying it off, but it makes no sense to pay the extra money every month for the car payment for 9 months, and the extra money or car insurance indefinitely. In addition to saving that money every month, the money we earned from the sale of the car will go a long way toward paying off some credit card accounts and eliminating those monthly payments, as well. In all, we've gone a long way this week in preparing ourselves to live without my income. There's more work to be done, but we've made a HUGE dent in our deficit.

So, that's what you need to know for now about the tandem transplant plan. As we get closer to the allo transplant, I'll write more about it, but I've found it's best to just focus on the step immediately in front of me.

Stem Cell Collection - Part Two

And now, for the exciting conclusion of our story of John's stem cell collection...

Tuesday, February 5
Tuesday morning, I didn't feel right when I got up. Granted, I had to be up by 6:15 to be ready to go when my brother Jeff came to pick me up to go to the hospital at 6:45. He's an attorney downtown, and can benefit from going in early, so he said he'd be willing to take me in for my 7:15 appointments throughout the week until I was done with the collection. That way, Noelle could go through her usual morning routine with the kids, and then come to the hospital after getting them off to school. Anyway, like I said, I didn't feel great. I was only able to get a few bites of cereal down, and the apple juice with which I took my morning pills didn't taste right. Unfortunately, things not tasting right is a side effect I've grown used to over the past four months, but not one I expected to come back three weeks after finishing my last round of chemotherapy. I guess Mozobil can have that effect on patients, too.

I got to the BMT clinic at the hospital and had labs drawn, then went down to what I call "the Red Cross Collection Room." The Red Cross actually oversees the collection, storage and transfusion of whole and part blood products for LDS Hospital. We had to wait about 1/2 an hour or so before we could get going on the collection. There's some number they look at in a person's blood work to determine to what degree stem cells are circulating in the blood stream, and therefore, their readiness to have stem cells collected. Whatever the number empirically represents, they want it above 10, as a minimum. The reason they collected my stem cells on Monday is because that number was at 117. On Tuesday, I was at 248. They hooked me up and set right to work on cycling through 20 liters of blood. When Noelle got there, she brought snacks and DVDs of the 3rd season of Modern Family.

Things went along OK, aside from the fact that I felt nauseous and I wasn't able to produce any saliva. Consequently, when I tried a Ritz cracker from Noelle's stash of snacks, it was like ash in my mouth. I was able to drink a little, but I remained parched. Noelle hung out with me until she had to go early in the afternoon to be with our sickies. A couple of our kids were sick and had been taken care of by a friend, but she had somewhere she had to go in the afternoon. A short time after Noelle left, I threw up. The all-day nausea had reached its climax and I was done. About 1/2 an hour later, we finished with the collection with a whopping 16 million stem cells to add to the 5 million I produced on Monday. I'm now known as Superman around East Eight. It's not quite a two-day record, but very, very close. =0) After I was done, I hung out and waited for Noelle to return to take me home. That afternoon and evening, I couldn't find the gumption to eat anything. I still felt nauseous, nothing sounded good to me, and I was absolutely wiped out physically.

Wednesday, February 6 - Friday, February 8
The next few days were rough. To start with, I had a horrible time eating, which led to tremendous lethargy and frustration. I tried so many things, and everything tasted awful and made me feel nauseous. Sometimes, just the suggestion of a particular food made me feel like throwing up. Foods I typically love were some of my least favorite things to even think about. I was able to choke down some noodles a couple times, but if they were seasoned too much they made me sick. It was really hard on Noelle to see me have such a difficult time eating. I'm the guy who has a history of having difficulty knowing when to STOP eating. I had a marathon dentist appointment on Thursday afternoon to take care of some dental work that my doctors said HAD to be done before the transplant. When I got home from that, I saw my family sitting down to a dinner of shepherd's pie that someone from church had brought for us. It looked so good. I actually ate a small serving of it, and I didn't feel like puking. It was amazing. Noelle started to cry and told me she had prayed that I would be able to eat it. Unfortunately, later that night I was hungry, but nothing - and I mean NOTHING - sounded good to me. By Friday, I was beginning to really worry that I would never feel like eating again. I forced down some spaghetti noodles with salt, pepper and parmesan cheese, but didn't enjoy it at all and couldn't finish the small portion I had prepared for myself. Friday night, I was really concerned about regaining my strength in time to return to work by Monday. Before going to bed, I had a very serious talk with my Father in Heaven. I was worried. On Tuesday, I had thrown up the little bit that I had eaten that morning, and since then had consumed only 1000 calories or so. Noelle thinks It might be as much as 2000 calories, but I think that's a bit high. Anyway, I told my Father that I really, really needed His help to be able to start eating again.

Saturday and Sunday, February 9 - 10
I began to feel a little better and was able to force myself to eat a few times on Saturday without feeling nauseous. My energy began to return, but I was still quite far from feeling anything close to "normal." Sunday was even better, and my appetite had actually returned, though my ability to find things I liked was still a little lacking. before going off to church, Noelle put a few big potatoes in the oven, and when they were finally done around 11:15 or so, I ate one and actually enjoyed my food. What a welcome change! That said, however, I knew I had a long way to go to regain my energy. Finally, though, my worries about whether or not I'd be able to return to work on Monday had subsided. I was going, whether my body felt like it or not.

Stem Cell Collection - Part One

So, in order for a blood and marrow cancer patient to have a stem cell transplant, the stem cells have to be collected from the patient or from someone else. In the case of an autologous transplant, they're collected from the patient (see me raising my hand for the purpose of identification). While only 3 to 5 million stem cells are required for the transplant, my doctors wanted to play it safe and collect between 10 and 15 million cells, enough for a few autologous transplants. In order to be fully prepared for the transplant and all that goes with it and follows it, the patient also needs to have a "central line" put into his or her chest. So, here's what the past week has been like for me...

Friday, February 1
At about 8:00 a.m., I got out of the shower and felt a mild twinge of pain in my lower back. It lasted about 5 or 10 seconds then went away. I said something like, "What the heck?", and then I forgot about it.

At 9:00 a.m., I received my first injections of Neupogen, a drug designed to cause the stem cells in a person's body to proliferate, or reproduce faster than normal. The most common side effects are mild flu-like symptoms and bone pain. The bone pain is caused by the marrow in the bones working extra hard to produce the extra stem cells.

During my day at work, my lower back pain came and went, but every time it came, it lasted longer and became more severe. I tried to stretch it out, as one would typically do with back pain, but it didn't help. By the time I got home, the back pain was almost unbearable, and there was nothing Noelle or I could do to determine its cause or find a position for my body that relieved it. While it continued to come and go, additional pain began in my sternum. I called and spoke with the charge nurse at the hospital, and we determined that with the pain beginning before even starting the Neupogen that morning, the two were not related. She told me that if the pain was still there in the morning, I should come in to see if we could determine its cause and find a good treatment for it.

Saturday, February 2
After a fitful night of "sleep," I gave up on the idea at about 6:30 a.m. I called the BMT Clinic around 8:00 and was given an appointment at 10:30. By this point, the bone pain from the Neupogen had begun in my pelvis and hips, adding to the discomfort in my back and sternum. In order to give Shar, the PA we met with, as accurate a description of the pain and its whereabouts, I didn't take any Oxycodone or any other pain killer that morning, though I really, really wanted to. Unfortunately, Shar couldn't figure out the cause of the pain in my back, though she did let me know that the pain in my sternum was related to the Neupogen, and not to the back pain. After three hours of attempting to figure out what was giving me the back pain with blood work, tests and medication, Shar ultimately gave up and prescribed a stronger pain med (Oxycontin) than the Oxycodone I had and said it should help with my back pain as well as the bone pain from the Neupogen. The Oxycontin helped a lot and by Sunday the mysterious back pain went away and I was left only with the bone pain from the Neupogen.

Sunday, February 3
Bone pain, bone pain, bone pain. I walked around like an old man on Sunday, as I was really feeling it in my hips. Although they made the second half interesting, my 49ers lost the Super Bowl to the Ravens, who looked like the team of destiny all through the playoffs. That's about all I have to say about Sunday.

Monday, February 4
Monday was the day to remove the "peripheral" or "PICC" line from my arm and replace it with the central line in my chest. I came to the hospital at 7:15, having not eaten since Sunday evening, as they had requested that I come fasting since midnight with the exception of water to take my pills. No problem. The surgery was scheduled for 8 a.m., and would only last about 30 to 45 minutes under conscious sedation. Then after a little time in recovery, I should be able to eat and go home. After drawing some blood work on East Eight, Noelle and I went down to the Angio Prep/Recovery room. My surgery was delayed for about 3 hours because there was an emergency with another patient that took doctors away from my unit, as I understand. I hope that whoever it was is OK and recovering well.

Here's a picture of me waiting to go in for my surgery.

So, finally, a few minutes before 11:00, I was finally taken into the operating room, given some "happy juice" through my PICC line and the next thing I knew, the operation was over, and they were pulling the PICC line out of my arm and dropping it in a trash can. When I got into recovery, Noelle told me that East Eight called down and said that my labs came back and my numbers looked so good that they wanted to begin stem cell collection that day...as soon as we could get back up to the BMT Clinic.

So, up we go to get me hooked up to the apheresis machine. For about three hours, blood flowed out of my body and into the machine. It spun and separated my blood, pulled out the stem cells, and then returned the rest of my blood to my body. We cycled through 15 liters of my blood in those three hours, hoping to get a few million stem cells out of it. That would get us off to a good start before even receiving my first injection of Mozobil, which is the drug designed to cause the newly generated stem cells to be released from my marrow into my blood stream. Well, obviously the Neupogen had caused so many stem cells to be generated that a lot had already released into my blood stream with nowhere left to go inside the bones, as indicated by the 5.04 million stem cells we ended up collecting on Monday. It took a while for the count to come back from the Red Cross labs, and we had to wait for the number before I received my Mozobil injection. Obviously, if we had somehow collected over 10 million stem cells Monday, I wouldn't need the injection. Though it was a long shot, we had to wait. Then after receiving my shot, they still had to "observe" me for 1/2 an hour to ensure I didn't have an adverse reaction to it. I finally left the hospital around 9:15 p.m., 14 hours after getting there and 10 hours before I had to be back in the morning.

Stay tuned for the exciting conclusion of the story. (That means this post is long enough already and I'm too tired to write any more.)