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.)

What to Expect During My Hospital Stay

So, I know I just posted yesterday, but I had to add some things...

When Noelle and I were in the clinic on Wednesday, we had a visit with Rachael for a while between the two dozen blood samples and the bone marrow biopsy. We spent some time talking through my hospital stay for the transplant.

The first week, she said, isn't that bad. The chemo they'll give me on the first three days is an IV drip for a couple hours a day, and can give me some fatigue, but it shouldn't be awful. The transplant itself is pretty simple, as they just drip the stem cells into my central line as well.

Week two is typically the worst of the three (or four) weeks in the hospital. That's when sores will develop throughout my mouth, tongue, throat...basically my entire GI tract. Fun. People find it really hard to eat, as you might imagine. They'll help me through it as well as they can, but if I can't get things like yogurt, soup or ice cream down, then they'll have to "feed" me some calories via IV. Also in week two, I'll be needing blood transfusions. My body will have basically NO immunities, so they'll have to give me someone else's blood to help with that. Also, I'm guessing I'll get a few IVIG infusions (see the 2nd half of my post from Friday Dec 28th) to further bolster my immunities until my body starts doing its part again.

Two to three weeks after the high-dose chemo, my hair will begin to fall out. Yes, I've avoided it long enough. I'm gonna lose my hair. This is a no-doubt-about-it kind of thing, too. Everyone who gets this high-potency chemo drug loses their hair. OK. So what? At least I'll be through the coldest months of winter and the warmer temperatures of spring will be right around the corner. I think I'll be kinda sexy when I'm bald. We'll see what Noelle thinks.

Anyway, that's about it for now. Oh! I almost forgot. the influenza test came back negative. I did have a rough night last night, though. At one point, my fever registered at 104 degrees. I think that's higher than it's ever been in my life, though you'd have to confirm that with my mother. Gratefully, I received a priesthood blessing and as the word went out, several people who are already among the angels in human form who pray for me and my family regularly were able to pray specific to my needs at the time. In less than 3 hours, my temperature went from 103.5 to 99.8. It's been under control this morning, too. Here's hoping it continues that way.

Not All Bone Marrow Biopsies Are Created Equal

Well, it's been two weeks, and Wednesday was the dreaded bone marrow biopsy, so I should probably add a post to my blog.

The majority of the past couple weeks has been pretty uneventful. After I made my last post, my care coordinator, Rachael Beers, contacted me to let me know that in addition to everything else, I need to get together with my dentist and have any unresolved dental work done before February 12 (which is 1 week before I'm admitted to the hospital), if possible. I was told at my last dentist appointment in October that I have three cavities that should be filled. That appointment was two days before my "working diagnosis" of Chronic Lymphocytic Leukemia. I knew a cancer diagnosis was coming, so scheduling a time to get the cavities filled wasn't a huge priority for me, as you can imagine. Now it is a huge priority and my dentist is all booked up. There was a cancellation on Monday the 14th, so I got one cavity taken care of, but there was nothing else. Then another cancellation happened for yesterday, but I was running a fever of 102 degrees, so they didn't want me to come in. I have another appointment scheduled for the morning of February 13th, but that's after the one-week window has closed, so we're hoping to get two more cancellations for this coming week and/or February 11th.

Last Sunday, there was a 24-hour urine specimen I had to collect and turn in to the lab on Monday, but I won't go into any further details on that other than to say that the test results show that my kidney function is just fine.

So...Wednesday. I went in to LDS Hospital Wednesday morning and got to start with the "easy" stuff. First was an EKG and ECHO in the Cardiac center. My heart is in perfect health, which is great to know, considering all the major heart disease issues men on the Philpott side of my family have had. The ECHO was cool. It's a sonogram of the heart, for those who have never had one done. I was allowed by the tech (Linda) to watch the whole thing. The human heart is absolutely amazing. watching the valves all working in tandem seeing shots that showed the rate of blood flow, measurements of the different chambers, seeing all four chambers at once with the aorta right in the middle of them all...it was so cool. Another neat thing was listening to the different valves working. I wished I had my phone handy so I could record the sound for my kids; I think they would have thought it was pretty cool, too. After the heart stuff was a chest X-ray - something I'm all too familiar with after my two bouts with pneumonia - and pulmonary function tests where I breathed into a machine in weird patterns. Then we - Noelle was with me - went up to the BMT clinic.

The first order of business was to draw some blood. Um...scratch that. The first order of business was to draw a BUNCH of blood - about 20 or 25 vials! They need to check for any and every infectious disease known to man, as well as check any and everything else they can from blood. Then we were taken to a room to await the bone marrow biopsy. Now, I had a conversation with Rachael, my care coordinator, a while ago about my last experience with a bone marrow biopsy. I expressed my trepidation about going through it again, though I knew I had no choice in the matter. She explained to me that because all they work with is blood and marrow cancer patients, they do a ton of biopsies and are very good at it. They would also give me more to help with the pain than just two Lorazepam pills. I asked if I could be put under for the procedure, and Rachael told me they want to avoid that if possible, due to complications that can arise from anesthesia. She did a lot to put me at ease, though, and so I went into the procedure a lot more relaxed than I thought I would be. The person performing the procedure was Steve, a PA in the BMT center who I knew from several other visits. We talked through the procedure and decided to use Dilaudid, Lorazepam and something else I can't remember to help me relax and feel less pain. So, the drug I can't remember the name of caused the muscles throughout my body to twitch uncontrollably throughout the procedure. If the overall pain rating for the last biopsy was a '10' (and I'm sticking with that assessment, by the way), then this one was probably a '6.' The worst part was the aspiration, which is when they suck out samples of the liquid marrow. I just don't think there's anything they can do to prevent pain for that part of the procedure. On the other hand, it wasn't as painful as the aspiration during the first biopsy. Then, when he took the sample of the "core," or the solid part of the marrow, there was very minimal pain, by comparison. I listened to music on my iPod during the procedure to try to help me relax, but I was pretty tense through the whole thing. I kept waiting for it to turn into a '10.' It never happened, so when I have to do this again I'll definitely be a lot more relaxed, knowing what to expect. The rest of Wednesday was spent at home, relaxing, recovering and missing an appointment with my dentist.

Yesterday morning I woke up with body aches and a fever of 102.3 degrees. If I weren't a cancer patient, I'd just take some Tylenol Cold and Flu and do my best to make it through the day. Unfortunately, I am a cancer patient, and a fever like that means I have to go in to the BMT clinic. After spending a couple hours there, there was no definitive diagnosis, but a 24-hour blood culture was done to see if I have influenza. 26 hours later, I'm still waiting to hear. I don't think the test will come back positive, but I've been surprised by other things before, so we'll see. So, yesterday was spent resting and not eating enough food. I had NO appetite at dinner time. Last night I didn't sleep well at all. I woke up at 2:30 to go to the bathroom, and was awake for close to an hour. Then I woke up again at 4:10 for no apparent reason, and was never able to go back to sleep again. So, yeah...today I'm very tired and I still have a fever and body aches. After eating some lunch I hope to be able to take a nap. We'll see.

Transplant and Recovery Timeline...Finally

OK, so...I'm freaking out about the next six weeks...actually about the next three months, but the next six weeks are the most nerve-wracking of my life. Any one of the things I'll be going through would make me nervous, but discussing the schedule for my transplant with my Care Coordinator Thursday and reviewing it since then has been incredibly overwhelming. Here's what's on the horizon:

• Jan 23 - Bone marrow biopsy (please refer to my post from October about knowing what a '10' is like), extensive blood work, and multiple tests on my heart, lungs, kidneys, liver, brain, and assorted other body parts and functions.
• Jan 31 - Meeting to review all test results and ensure we're ready to go. This is sort of the point of no return.
• Feb 1 - Daily injections begin to cause my stem cells to reproduce at a very fast rate.
• Feb 4 - All day at the hospital for injections in the morning, removal of my PICC Line, placement of my Central Line, and a new injection in the evening to cause all of my newly generated stem cells to be released into my blood stream.
• Feb 5 - Several days in a row of stem cell generating shots in the mornings, 4 to 6 hours hooked up to an apheresis machine to "harvest" stem cells from my blood, then shots in the evening to keep the stem cells releasing into the blood stream until we're done harvesting them. This daily process continues until we have enough stem cells, typically 2 to 4 days, though it could take longer.
• After that, my body will be given a "break" for about a week.
• Feb 19 - I will be admitted to the hospital.
• Feb 19 to 21 - I will be given extremely high doses of chemotherapy to literally wipe out 100% of my bone marrow (stem cells and new blood cells inside the bones).
• Feb 22 - Transplant day. My stem cells that were harvested two weeks before will be put back into me through my Central Line, then they'll find their way to where they need to go. The human body is amazing, isn't it?
• Feb 19 to March 12 (minimum) - At least 3 weeks total time in the hospital, allowing my stem cells to "take" and begin doing their job of producing platelets, red blood cells, and white blood cells and their accompanying immunities. Pain meds and lots of rest, as my energy levels will be lower than ever before in my life. This may be the toughest part of the whole process, as I HATE being cooped up in a little hospital room. I will be blessed to be tended to by the great staff in the BMT unit at LDS Hospital, but it won't be enough to keep me sane. Gratefully, Noelle's sisters are coming out for the time I'm in the hospital so she can come and visit me every day and have help with the kids. Hopefully Noelle will stay healthy enough that she can come daily, as I'll have virtually NO immune system for a while. I'm so grateful that her sisters are coming to help. They have no idea what a relief that is to me and Noelle.
• Mar 12 to 19 - I should be released from the hospital at some point in this time frame. 
• Two to six weeks following release from hospital - At least 2 weeks, and perhaps as long as 6 weeks or so, of convalescence at home. I've been warned that my energy levels will still be WAY low. This is when I'll be needing lots of visits from healthy friends and family to keep me from going nuts. My oldest sister, Christy, plans to come out for a week. Also, "The Guys" from high school will come out for a few days. I'm WAY excited about both of those visits! Other than that, I'm hoping that others can come and keep me company here and there as I sit in bed or in my recliner next to it for weeks on end. Noelle will be busy as a "single" mother of five (six, if you include me), and will need all the help with me that she can get. Otherwise, she might throw me out the window. =0)

The last weekend of April, I'm scheduled to be the best man for the wedding of an old mission companion. I need to be better by then. The wedding is in Logan, UT on a Friday, and the reception in Pocatello, ID on Saturday. I'll just have to trust that I'll be we'll enough to go, and not allow my body to give me "no" for an answer.

With all that's before me over the next couple months, there's not a lot I can do other than take things one day - or one moment - at a time. There are a lot of things I'm nervous about when I think about them individually, not to mention that they'll all be coming right on top of one another (bone marrow biopsy, super-high doses of chemo, transplant, sitting on my butt all day for 5 to 8 weeks). I've decided to do my best not to think too much about it at all. I may not succeed with that plan, but that's the goal. I've decided that all I can do is say, "Do to me what you need to, good doctors, and I'll just have to trust your skill and training, the fasting, thoughts and prayers of those who care for me, and the grace and mercy of God to get me through it all without throwing myself out the window."

A Modified Chemo Plan & Help for Neuropathy and Insomnia

Yesterday, I went in to the clinic for a checkup on the pneumonia and with the hopes of beginning my chemo cycle. After my chest x-rays confirmed that there are no further signs of the pneumonia, I met with the Physician's Assistant, Jodi, and with Dr. Kelly Konopa about my neuropathy, which has continued to worsen and become more and more painful. As I mentioned in my last post, neuropathy can be reversible if it's held at bay at the Stage 1 or Stage 2 level. I'm at Stage 2 now, so Dr. Konopa is a bit concerned, considering the speed at which my neuropathy has advanced and the fact that it's been almost 4 weeks since my last infusion of Velcade, which is the chemo drug that can cause the condition. She recommended that we move forward with my oral chemo med, Revlimid, on its own, and see how things go. She also prescribed a new pain med for me, which targets nerve pain. I take it once a day for the first 3 days, then twice a day for the next three days, then three times a day after that. After taking my first dose last night, I can already feel a difference today. There's still pain, but it's not quite as severe as it has been, and it was much better last night. Here's hoping that the neuropathy subsides with the medicine and the lack of Velcade.

Another issue I've been facing for the past couple months is insomnia. I never seem to have trouble falling to sleep; it's staying asleep that's been the problem. We tried Ambien, and it failed. Strike one. Yesterday, I explained that the Lunesta we switched to last week still isn't doing the trick for me. Strike two. So, I was prescribed a third option. I went to bed around 11:30 last night, and only got up once at 5:45 to go to the bathroom. When I was walking to and from the bathroom, I could tell that getting up at 6:20 wouldn't be a good idea, as I was very, very shaky and wobbly in walking. Noelle had to wake me up at 8:10, when she was taking the kids to school, and it still took me about an hour or so to begin to feel "right." I'm thinking we've found a winner for a sleeping pill. I'll have to go to bed a lot earlier if I'm going to be functional enough to drive myself to work by 8am, though.

So, in theory, the schedule for my autologous stem cell transplant has only been delayed by one week, providing missing the Velcade on this cycle doesn't allow my body to start producing plasma cells again.We're looking at mid-February now, only about 6 weeks away. A close friend asked me last night if I'm afraid of the transplant surgery, and I told her I'm not. On the other hand, I am a bit apprehensive about the 3 to 4 weeks I'll have to spend in the hospital. I'm gonna go absolutely crazy sitting on my butt all day. Anyone who knows me well will understand how difficult that would be for me. The 5 1/2 days I was in the hospital to get my chemo under way in October were excruciating for me. I'm so glad that the staff on East-8 are so amazing. They'll help keep me from throwing myself out the window. (Not serious, of course.) The 2 to 6 weeks I'll be convalescing at home won't be as bad, considering I'll be in a more comfortable surrounding with people I love. Unfortunately, my immune system will be so weak that I'll have to be more careful than ever about being around my kids or anyone else who might be carrying any kind of communicable illness. It'll be a long and potentially frustrating month or two. BUT, if it's what has to be done, it's what has to be done. I'll find and focus on the bright side every day to get me through. I think I'll just spend a lot of time reading and watching Netflix, and catching up with friends and family by phone. =0)

Goodbye, Plasma Cells; Hello, Neuropathy and Pneumonia

Ok. It's been two weeks since my last post, so here's an update to what's been going on.

The most important development is the confirmation that my blood tests show NO TRACEABLE CANCEROUS PLASMA CELLS remaining in my blood stream. There actually haven't been any found since Mid-November. I think it's amazing that modern medicine can target things so well and command the body to destroy and filter out the cancer so quickly. I'm so blessed to live when I do. If I had been born 100 years earlier, I would likely have not had any idea about the cancer and would have died at age 40 from pneumonia or some other ailment that became too severe for my body to handle because of a sorely deficient immune system. What a blessing to live now! Anyway, my blood being cancer-free should not be confused with being cured, as I am not. My DNA is still "broken," and without continued chemo and my planned stem-cell transplants, there will be no cure for me.

Last week Monday, the 17th, I began experiencing some pain in my hamstrings and the back of my knees. over the next few days the pain moved lower and lower through my legs until it reached my feet and stayed there. Now, my hands and the soles of my feet are frequently (if not, regularly) in pain unless I take Ibuprofen, Oxycodone, or a combination of the two. When I was at the BMT clinic this Wednesday, Dr. Mitchell said it's probably Stage 1 Peripheral Neuropathy. Nothing to be too worried about right now, but we need to keep tabs on it. The neuropathy is brought on by cumulative damage to my nervous system caused by Velcade, one of my chemo drugs. If the problem continues to get worse, they can modify my dosage, as stage 1 and stage 2 neuopathies can be reversed, but stages 3 and 4 are rarely reversible.

Last Thursday afternoon and evening, I began to show signs of a heavy cold and chesty cough. It failed to go away or even subside, and Sunday night I began to run a fever. Over the next few days including Christmas (Tuesday), my temperature fluctuated between 99.0 and 101.7 degrees, my cough became more persistent, and I began to hear and feel fluid in my chest...yes, even without a stethascope. On Wednesday, I was scheduled to go into the cancer clinic at Intermountain Med Center for bloodwork in the morning, then LDSH's BMT clinic in the afternoon for Day 1 of my final chemo cycle before my first transplant. I called the BMT clinic, and told them about the cough and fever, and they told me to come in that morning. When I left the clinic at about 2pm, I had been diagnosed with my second case of pneumonia since my cancer diagnosis and had my chemo cycle suspended by at least one week. I'm now on 750mg/day of Levaquin (an antibiotic) and am currently sitting in the BMT clinic as I write this for an IVIG infusion. IVIG is Intravenous Immunoglobulin, an almost-clear blood product that contains the combined immunities of over 1,000 people. As you might imagine, it's given to bolster my immune system not just for the pneumonia, but for whatever else it may have to fight, as its effects can last anywhere from a couple weeks to a couple months. They've suspended my chemo because, by nature, chemotherapy meds wipe out my system's infection-fighting ability with the destruction of my white blood cells.

One of my favorite nurses, a gal named Samantha, or Sam for short, is moving away and today is her last day here at LDSH. She became a favorite nurse a couple weeks ago when I was in the clinic for chemo and had to wait a while for the pharmacy to get it upstairs. She went on break and told Tony she was going to get some ice cream. When she asked him if he wanted some, I joked that I could really use some to help with my dry mouth and throat. I didn't think she'd take me seriously, but she went and got me a big scoop of vanilla ice cream. Here's a picture of Sam and Tony...

...And the ice cream Sam brought me. =0)

That's about all I can write right now, as they gave me some Benadryl before starting the IVIG. That just adds drowsiness to drowsiness, as I took an Oxycodone for the pain in my hands and feet before I came in this morning. I think I need to take a little nap now.

Cancer sucks!

This image was posted on Facebook by an old high school friend of mine. It prompted the following "little" rant from me:

Thanks to my old friend, Kym Chambers, for sharing this. I am so grateful to many of my old and new friends who "get" this. Cancer brings a completely new perspective to those who battle it every day. People compliment me on my positive attitude and outlook. People tell me they're inspired by me. People tell me the KNOW I will beat my cancer (as if I'm some pro football team playing against a bunch of 10 year-olds).

The truth is that cancer is the most frightening thing I've ever faced. I lie awake at night sometimes, not because of some side effect of the chemotherapy, but because I'm afraid of what life will be like for Noelle and my children if the cancer beats me. I'm inspired by my God and by my desire to be with my family for many more years before I "move on," and wonder how others can possibly be inspired by me, a 40 year-old man who hates the fact that he can't exercise, wrestle with his kids or bend over to tie his shoes without worrying about whether one of his bones will break because his cancer has made them so brittle; a man who has always taken pride in being among the hardest-working, highest-achieving people in whatever company he's worked for, who now struggles to work a full day or hit 50% of his daily goals. Everywhere I go, I have to wear my stupid mask - a constant reminder of the cancer - not because I'm sick, but because others who are don't know or care that they're breathing germs all over the place and that I could be hospitalized over something that their body fights so effortlessly that they may not even realize that they're sick or give it a second thought if they do.

Cancer sucks, in case you haven't heard or experienced it personally. I hate stupid cancer. There. How's that for attitude and perspective? Some might respect me less now. Fine. If you do, you weren't real friends anyway. Some may respect me more. Fine. You needed to hear this. Others may just be grateful to learn that I'm human and that I struggle with this. You're welcome.

Phew! So glad that's off my chest!

A Personal Visit from David A. Bednar

Today, my family had an experience that will stay with us for the rest of our lives. At 2:11 this afternoon, I received a phone call from our current Stake President, who will be released from his calling tomorrow morning in our Stake Conference. "John, it's President Tindle. How are you?" "I'm doing well, thank you." "John, are you and Noelle home this afternoon?" "Yes." "Good. I'd like to stop by and visit with you for a few minutes in a little while with Elder Allen and Elder Bednar. Would that be alright with you?" "Uh...yes, of course." "Great. We'll be by some time between 2:45 and 3:00...maybe a little after that. Will that work for you?" "Of course." "Great. We'll see you then."

Elder David A. Bednar is one of 15 men in the Church of Jesus Christ of Latter-day Saints who is sustained and ordained as an apostle of the Lord Jesus Christ today. These men are the president of the Church, his two counselors in the First Presidency, and the twelve men who make up the Quorum of the Twelve Apostles. If we were living in the year 45 AD, it would be as if I had been told that one of the apostles like Matthew or Peter or James would be visiting my home. Elder Bednar has been commissioned, as the apostles of old, to "go...into all the world, and preach the gospel to every creature. ...And they went forth, and preached every where, the Lord working with them, and confirming the word with signs following" (Mark 16:15, 20).

I called my family together and told them that we were to be visited by Elder Bednar in half an hour or so. Gratefully, Noelle keeps a very clean house, so there were no issues there. I shaved. Noelle did her makeup.  We and the kids all got dressed in Sunday dress. We had the kids all go to the bathroom, because we didn't want them to have to go during the visit. =0) Then, we waited. Isaiah was bored. Jenna was feeling sick. Emma, Michael and Abby were fidgety. Noelle and I worked really hard to keep ourselves calm so we could help the kids do the same.

When they arrived, I met President Tindle at the door. He smiled and said, "John, it's good to see you. Thanks for letting us come." (Like I would have said no...) "This is Elder David A. Bednar." (Uh, yeah. I know who he is.) "And this is Elder Stephen B. Allen, who's traveling with him." Elder Allen is an Area Seventy, and is assisting Elder Bednar with the reorganization of our Stake Presidency. They came in and introduced themselves to Noelle and the kids, asking them their names and ages, and paying them little compliments as they did so. I offered the couch to Elder Bednar, and he said with a smile, "That's alright. I think I'll just take the piano bench, if that's OK."

Their visit was wonderful. Elder Bednar began by asking me about my battle with cancer and the prognosis, and then asked me and then Noelle what has surprised us about our own selves as we've been going through this. He then counseled us to remember that the Atonement of Jesus Christ is not just about being made clean. It's also about being strengthened and comforted by the our Lord to accomplish things we could not accomplish on our own. Elder Bednar said that that is the very definition of the grace of God.

Elder Allen recognized Noelle for the burden she carries and told her that the fact that God trusts her with that burden is evidence that she is a choice daughter of God and that God trusts her.

My favorite moment of the visit was when Elder Bednar looked us straight in the eye and said, "I witness that the Lord is personally aware of you. He is mindful of you and all of your needs." When he said, "I witness..." the intensity in his countenance turned up a notch or two, and I could tell that he was speaking for the Lord as His commissioned representative. He assured us that blessings will continue to come to our family as we continue in faith.

There were a lot of other things said, and counsel given, but those are some of the things that stick out. Elder Bednar closed the visit by praying with and for our family. It was beautiful. No flowery language. No over-used rhetoric. Just a child of God praying to his Father in Heaven with sincerity and love. The prayer was not short, but all of the kids - yes, even Isaiah - were super good and super quiet and reverent. Before leaving, he gathered with all seven of us for a picture.

Well, it's only 8:45 at night, and I'm already fighting to stay awake. I really hope this post is coherent. I'll re-read it in the morning to see if I need to edit anything.