Scattered Pictures

Over the past few days, I've been having some memories come to me from my "three weeks of hell" back in June and July. I feel the need to get them down here in my blog for posterity's sake. For anyone besides myself who may be reading this, you can go to my post from July 12, 2013, called "An Unexpected Hiatus" if you want to know (or need a reminder of) what I reference by "three weeks of hell." Here are a few memories I now have...

I remember dreading night time. I had trouble communicating and knew I needed to sleep. Unfortunately, sleep is hard to come by when you have limited ability to move your own body or readjust your own position in bed. I remember wanting to have my feet raised or lowered, or being too hot or too cold, or needing to have my position in bed changed, and only being able to groan or grunt at my aide or nurse. Inside my head, I was screaming complete sentences at them, but grunts and groans were all that would come out. They had to play a guessing game with me and they got so frustrated that I couldn't communicate exactly what I needed. Other times, I knew I was uncomfortable, but couldn't even figure out for myself what I needed changed. My brain just wasn't working well enough.

My brain functioning at only about 1/2-power caused countless other issues. I had little to no warning for when I needed to use the bathroom, so I had to have a Foley catheter "placed." =0S  After a few days with it in, it was taken out, and I didn't want it back in. I still had trouble knowing when I had to go, but refused to have one put back in. Any time Noelle and a nurse would discuss it, I'd become lucid enough to cry out in protest, "Foleys suck!" Noelle says it was funny because there would be days when that was all I could say that was intelligible. I guess if something was important enough, I could break through the fog of incoherence just enough...

I remember trying to communicate with my nurses and aides and having them try to spell what I wanted or needed. Unfortunately, they would start with, "What does it start with?" and they'd have to guess. It was so weird to me that a) I could spell the word in my mind without a problem, but I couldn't speak it, and b) that my nurses and aides couldn't read my mind. I also got really mad when part-way through a word, it would change in my mind because the process took so long. Then the nurses would get REALLY confused! Someone told Noelle once that I had them spell something that wasn't even a real word.

I remember calling one of my CNA's (sorry, Kara) a moron. Why, I do not recall. She didn't deserve it, and I'll owe her forever for putting up with me and not holding it against me, except in jest. She knows I wasn't "with it," so she never got angry about it. Also, there was a time when my nurse, Ashley, and Noelle were helping me walk to the nurses' station to request a certain nurse for the next day, and I got a cramp in my calf. Ashley asked if I wanted her to massage it and I said I did. She began, and then I asked her to massage a little higher, then higher still. After 3 or 4 requests to massage higher up my leg, I shouted out, "Are you trying to get FRESH with me?!?" Noelle tells me that was a good moment because some of "the real John" came out. I was just joking with her after baiting her for the punchline, and it's one of the few truly happy memories from those three weeks.

As I mentioned in my post back in July, I had lots of tests run on my over the first two weeks to try to determine what could be done to fix the fact that the toxins weren't filtering out, or to determine what possible long-term effects they were causing or could cause. I don't remember many of the tests, but I remember being taken to various floors of the hospital in my bed or in a wheelchair. Noelle tells me that the vast majority of the tests were done with me in my bed, and only a couple were with me being transported in my wheelchair. I remember two MRIs. One was a regular one, but the other was one where they locked my head in place for close to an hour. That was THE WORST!!! Noelle sat outside the machine for that one, just touching and stroking my lower leg to let me know that she was there. I remember having a feeding tube put down my throat into my stomach and needing Noelle there because the techs that were trying to place it couldn't understand me. I gagged and gagged on the tube as it went through my nasal passages and down my throat. It was a pretty awful experience.

I remember Noelle leaving me one night and me crying because I felt so much better with her around. I didn't want to be babysat overnight by some orderly. I felt like Noelle was the only one who understood what I needed.

I remember when one of my doctors, Dr. Ashe, was playing the "squeeze my hand if..." communication game with me, and somehow she was doing it wrong. I don't remember what was "wrong" about the questions she was asking me, but there was a definite difference between how she was doing it and how Noelle did it. I got so frustrated that I looked at Noelle and shouted something like, "She's doing it wrong! Help her do it right!" And then I went back to not speaking. It was sort of like the issue with the Foley.

Another really good memory is when I started doing better with my physical therapists and started walking. The first time I made it to the nurses' station, Kim (one of my favorite nurses) was there. I said in my high, squeaky voice (from lack of use), "Hi, Kim." and then I started to cry. I was so happy to be out of my room and beginning to be mobile again. I remember Dr. Ashe walking a lap around the floor with me and giving me a big hug and telling me she was proud of me. I also remember the smiles on the nurses faces when I would pass the nurses' station. They were SO happy to see me up and about, and I felt so proud that I cried.

I remember playing Five Crowns with Noelle once, and being so confused and unable to think strategically. I finally gave up, showed my cards to Noelle, and asked, "would you tell me what to do?" I just couldn't figure it out.

I remember some visits from family and friends. On my birthday, my family members came to say hello. I remember hugging Christy (Linda) and telling her, "When I hug you, I see a purple frog." Then after hugging Gwen, I said, "When I hug you, I see a purple frog in dreadlocks." I vaguely remember George and Uraisa coming into the room, but I don't remember speaking with them or hugging them. I remember Noelle bringing the kids (against my protests), and having a hard time hugging them or talking with them. On other days, I remember the visits of others. For example, my home teacher, Jeff Kendall, came with Jeff (my brother) to give me a priesthood blessing by the laying on of hands. I remember Matt Moore and Joseph Scott each coming for a night. I vaguely remember Larry Hiller coming, as well. I also remember a day when Jeff brought his boys and talked with me for a little while. I remember having some trouble putting together sentences or staying focused on what I was trying to say from the beginning of a sentence to the end of it. But I remember telling him that I knew I was starting to get better and that I felt the Holy Ghost with me, comforting me. After a few minutes, I just couldn't focus on our conversation anymore. It was too hard for my brain. Jeff told me it was OK as I just sat there crying. Yes, I did a lot of crying.

Well, that's about as much as I can remember for now. Merry Christmas, and whether you're in the hospital or not, be sure to count your blessings.

The Best Way Out Is Always Through

Last night, I went to see the show "The Forgotten Carols" with Abigail. She earned a date with Noelle or I for getting straight A's in the first quarter of the school year. The show was great. I expected good, but not great. It was so good for me to get out, particularly to see a live, professional theatrical performance. After the show, the south end of the school was locked, and so Abby and I had to walk around from the north end of the school, where the auditorium is to the south end. It's a pretty big high school, so the long walk to the car in 17 degree weather kinda wore me out, but oh well. 

I've been doing OK lately. Not great, but not awful. My central line is out, which is awesome. After 14 months of having to shower with something hanging out of my arm or my chest, having to always cover it with Saran Cling Wrap and/or medical tape, it’s so nice to not have to worry about it. The spot where the catheter entered my chest is now completely healed up, with only a scar to show for it. Yippee Skippee! I get poked once a week now for my blood tests, but I can deal with that. It’s definitely a worth-while trade-off. The past few days, I've woken up feeling pretty nauseous. Today I wasn't able to eat anything until noon, and even then, it was just a piece of toast with some strawberry preserves. I was warned by my doctors that my appetite might drop off a bit when we got off of the prednisone (the steroid that was making me look like the elephant man), but I wasn't prepared for the nausea and the near-complete lack of an appetite. Hopefully it doesn't last forever.

I found this meme on Facebook today, as posted by the organization, StandUp2Cancer.org. 

It got me thinking...

Early on in my cancer struggle, somebody told me, "John, it isn't fair." I told them, "If God feels it's fair, then it's right." Since then I have gone through hell and I have come back. My journey is one that has taught me much. I would never give back what I've learned about God, my Savior, and myself through this journey. I agree wholeheartedly with Robert Frost who said, "The best way out is always through." Going through my trial has given me perspective and knowledge and understanding that I never could have gotten any other way. I have seen the selfishness that used to infect and pervade my soul. Now I see the selflessness that blesses and enlarges the souls of those around me. I have been forced to receive as those around me have felt compelled to give. Simon Peter said that Jesus went "went about doing good." So many of Jesus' angels in human form have done the same thing in behalf of me and my family. Their example has not been lost on me. So don't pity me for this thing called Cancer which infected my body, because it did not infect my soul, my spirit or my life. On the contrary, it taught me. It inspired me. It made me dig deep to find out who I really am, and determine who I really can become, want to become and vow to become. Some people view Cancer as a premature end to mortal life. I view it as an early preview and precursor to my immortal life which is yet to come. I am learning now how to live for eternity. I thank God for trusting me to learn from this experience by going through it.

I have had a change of heart about something. Easter used to be my favorite holiday, and Christmas my second favorite. You see, Christmas - the birth of Jesus of Nazareth, really - gains its meaning in the atonement that Jesus wrought 34 years later. Easter is when we celebrate Christ's victory over death (through the resurrection which we will all now receive) and over sin (through his suffering in the Garden of Gethsemane and on the cross, granting us the opportunity to repent of our sins and be forgiven). Without the atonement, the birth of Christ would have been far less meaningful, almost insignificant. For that reason, Easter has long been my favorite holiday. NOW, however... for the second Christmas in a row, I have been first-hand witness to, and the recipient of, such tremendous generosity and kindness that my heart has been changed. Christmas is and always has been Noelle's favorite holiday because there's an entire month or so of kindness and people going out of their way to be generous and giving to others. Now that I've had two Decembers in a row of experiencing that first-hand, plus one very special Christmas when I was 11 when people took care of our family when my dad was laid off, I can't help but say that Christmas is now my favorite holiday. Easter hasn't lost its meaning, but Christmas seems to inspire more goodness in people. I wish people would be this selfless and nice year-round, but in our society of increasing self-centeredness, where things that are fleeting and meaningless are adored and even idolized, one month of people turning outward and thinking of others first is pretty remarkable. Some friends (both known and anonymous) have given us money and gifts to help us provide a very memorable and merry Christmas for our children. It's humbling. It's inspiring. Noelle and I are already discussing how we can pay it forward in years to come. I'm sure I'll post more about it all after Christmas.

Anyway, I guess that's about it for now. If anyone else but me reads this, I hope you have a very merry Christmas!

November

So, November was a good month. It's a month when my thoughts always turn to the many things I have to be grateful for. We made our annual Gratitude Turkey poster, shown below, where we write down many of the blessings we're thankful for throughout the month. This year's poster was more full than I remember any previous years' posters being.

For every day of the month (some days I was a few behind), I made a Facebook post about something I was grateful for. Here's a list of the things for which I publicly expressed my gratitude:
1. Being cancer-free
2. Noelle
3. My membership in the church
4. My five kids
5. The scriptures
6. My siblings
7. My parents
8. My education
9. My home
10. Blessing the sacrament / Michael passing the sacrament for the first time
11. Food
12. Hand Sanitizer =0)
13. Utah
14. Santa Rosa
15. "The Guys"
16. Medicine
17. Music
18. Noelle's friends
19. Electronics
20. BYUH
21. Autumn
22. My ward
23. Opera
24. Books
25. My doctors, mid-levels and nurses on East 8
26. The removal of my central line
27. Faith and hope
28. (Thanksgiving) My Stem Cell Donor
29. The Christmas Season
30. Jesus Christ

When you have cancer and meet and get to know others with cancer, you're bound to meet with some bad news from time to time. Noelle and I have gotten to know some amazing people who are in the fight with various types of blood cancers, as well. November brought some bad news to a couple Noelle and I have gotten to know pretty well, Houston and Denise Holbrook. Houston went through absolute hell just to get to the point that they could do a transplant, and a few weeks after his transplant they did a bone marrow biopsy to find out if the graft was "taking" or not. The results showed that his leukemia had returned in force. 69% of his marrow was leukemic and this meant his transplant wasn't working, or at least wasn't working yet. For a young guy who had endured so much - four solid months in the hospital, several weeks of which were absolute hell - just to get to transplant, it made me want to scream out, "THIS ISN'T FAIR! WHY IS THIS HAPPENING TO HIM?!?" Honestly, it made me feel guilty for how relatively easy my path to remission has been. I just got so mad. Gratefully, over the past few weeks, things have gotten better for my friend, and there's still hope.

One of the things that sucks about knowing an increasing number of fellow cancer patients is that you know we're not all going to make it. That's just the reality of the statistics we face. So far, I've been one of the fortunate ones. But how many of my fellow patients whose stories I follow through blogs and Facebook posts and personal visits WON'T be among the fortunate ones? There's not a single one of us that's an awful person who deserves to die, so why will some of us have to? It makes me absolutely sick to think about it. I have always felt an assurance that I'd be OK in the end and that God has a few more things for me to do on this earth before I say goodbye. But one of the patients whose story I follow has always had a rather pessimistic view of things since their diagnosis. They don't seem to feel any peace about what they're going through or what outcome will come their way. Is that attitude reflective of a pervading sense that they will not be one of the fortunate ones, or is it that the pessimistic attitude may actually lead them to a poor outcome. I don't know. I do know, however, with whom I'd rather converse and spend my time, and it's not the chronically pessimistic. Cancer is hard enough without someone always moaning, groaning and complaining about it in your ear.

On a much more positive note, I got my Central Line removed from my chest last Tuesday. It was a pain to deal with when I showered, and with my chest hair growing in, the dressing around it always itched like poison ivy. So now it's out and I've got a big hole in my chest, like someone shot me with a .22. Well, actually I HAD a hole in my chest but now I've got a big scab. Soon I won't even need a band aid over it. And, a really fun thing about getting that darned thing out of me is that we can soon travel outside of the 45-minute radius from LDS Hospital, as my risk of infection drops significantly without a central line. The last week of February, we intend to go well outside that 45-minute radius as a family with a celebratory trip to Disneyland, one of the few things I love about Southern California (the other two are the beaches and that my sweetheart has roots there). Here's hoping all goes well and I can avoid any hospital stays or major setbacks that could derail plans for that trip. Positive thinking and steering clear of sick people should get us there. =0) Crossing my fingers...

October

October was a pretty good month. 

Not a lot has happened on the medical front during October. My steroids have been tapered each week so now I'm down to 15mg/day. When I left the hospital in July after my 3 weeks of hell, I was on 180mg/day of Prednisone, a steroid with a "normal" dosage of 7.5mg/day. So, coming down from 180mg to 15mg is a big deal. If all goes well and I continue to be free of any infections or symptoms of GVHD, we'll be able to continue tapering the steroid. On Tuesday (tomorrow), we would drop down to 10mg/day, and then the following week, we'd go off of Prednisone and switch to hydrocortisone, which is something my body should be making on its own. After being off of the steroids, we would very, very gradually begin tapering my Cyclosporine (or "Cyclo"), which is the immunosuppressive drug I'm on right now. When I say very gradually, I mean about once every three months we would drop it down by 25mg/day. I'm currently taking 150mg in the morning and 125mg at night, so only tapering by about 25mg/day every few months, you can see it'll take a while before I'd be completely off of the Cyclo. We need to go slowly with the tapering of Cyclo because with every taper, my risk of GVHD increases. With decreased levels of the immunosuppressive drug in my body, the immune system I will acquire from my donor will be more able to attack my body's systems like my gut, bowels, skin, liver, eyes, etc. It just depends on whether or not my new immune system will view my other systems as "foreign" because it's used to my donor's body's systems. When I was in the hospital following my second transplant, I did experience some minor GVHD of the gut, which just makes me throw up a lot. I HATE throwing up, so I hope I can avoid more of that down the road. Gratefully, GVHD of the gut isn't life-threatening...just an annoyance. 

The swelling and water retention I've gotten from the steroids continues, though it's mostly in my face, neck and torso now, and not so much in my legs, ankles and feet like before. every once in a while, I'll have a day when my ankles will decide to swell a little, but it's nothing like before. Noelle says the swelling in my head, neck and torso are coming down a little, but I don't see/feel it. I still look like someone stuck a bicycle pump up my nose and didn't know when to stop pumping. Oh well. It's only cosmetic. One of our favorite PAs at LDSH says the swelling will decrease even more slowly than it came on as we taper and ultimately remove the steroids altogether. Also, as we taper the Prednisone, there's some fatigue that comes with it. I think I've begun to exerience that, as this week I've been falling asleep on the couch or in bed in the mid-mornings. I wake up tired, and by around 9 or 10, I have trouble keeping my eyes open. I think it'll just take my body a while to get used to the lack of steroids.

Gratefully, with the tapering of the steroids, I've found it a little easier to keep my temper under control. That was a big issue in July and August, when my steroid levels were at their highest. They can cause undue levels of aggression and boy, did I feel it. Noelle had to put me in time out a few times. With some medication and counseling to go along with the tapering of the steroids, though, it's been much more under control of late.

I've been in the mood for Christmas for the past few weeks. I think it's because I missed out on Christmas last year. I was dealing with the onset of pneumonia and didn't feel very well. I was also going through chemotherapy last December, and not feeling like myself. Although I wasn't experiencing the worst symptoms chemo patients have to go through, I was fatigued, food didn't taste good, and I was pretty weak, so I couldn't help with all of the activities and decorating and cooking and cleaning like I would have wanted to. Gratefully, this year should be different. I've been listening to Christmas music a couple times a week for the past few weeks...during October! I've never been this ready for the Christmas season this early. 

The Light the Night walk on the 12th of October was a really neat event. We look forward to being a part of it every year. My team was able to raise close to $1,200 to go towards leukemia and lymphoma research. We hope to be able to generate much more in donations in coming years. As for the event, there was food provided by Texas Roadhouse, games and activities for the kids and live music for everyone. The event is called Light the Night because everyone who raises $100 or more is given a lighted balloon to carry as they do the walk. The balloons are in three different colors: red for supporters of blood cancer patients, white for survivors, and yellow in remembrance of someone who has lost their battle with blood cancer. As I walked with my white balloon, and my family surrounded me with their red ones, I was overwhelmed to see all the yellow balloons around us. It was really humbling and sad. It gave me this immense feeling of gratitude that my family wasn't there - without me - holding yellow balloons. 

I received my "working diagnosis" of CLL (Chronic Lymphocitic Leukemia) 13 months ago today, and my official diagnosis of MM/PCL (Multiple Myeloma/Plasma Cell Leukemia) 11 days later. The statistics I found over the first few weeks weren't encouraging. Less than 1/2 of PCL patients make it a year beyond diagnosis. I knew I had to ignore the published data and become my own statistic. God is a God of miracles. As my family and I have partnered with Him over the last year with lots of fasting and prayers, we have seen miracle after miracle. I attribute a lot of that also to the hundreds of prayers that have been offered in behalf of me and my family by so many others every day since word got out last October. My life could have been represented last month by a bunch of yellow balloons, but God has seen fit to rescue me from this disease and grant me some additional time on this earth before moving on. I'm unspeakably grateful to Him for that. Whatever He wants or needs me to do with the remainder of my life, I'll do it. I owe Him that. I just hope I'll be able to stay enough in tune with the Holy Spirit that I will always know His will for me.

Well, that's about it for now. It's funny sometimes when I sit down to blog and feel like I don't have much to say, and then the post ends up being several paragraphs long. Those who know me well won't be surprised by that. =0)

Remission, Light the Night and Phil the Pott

REMISSION!!!!

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

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

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

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

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

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

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

Nothing Left to Do But Wait - Day 100 Has Come

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

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

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

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

I need thee every hour, most gracious Lord; 

No tender voice like thine can peace afford.

I need thee every hour; stay thou nearby; 

Temptations lose their power when thou art nigh.

I need thee every hour, in joy or pain;

Come quickly and abide, or life is vain.

I need thee every hour; teach me thy will,

And thy rich promises in me fulfill.

I need thee every hour, most Holy One;

Oh make me thine indeed, thou blessed Son.

I need thee, Oh, I need thee;

Every hour I need thee.

Oh bless me now, my Savior; 

I come to thee.

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

A Very, Very Slow Healing Process

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

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

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

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

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

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

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

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

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

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

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

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

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

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

An Unexpected Haiatus

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

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

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

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

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

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

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

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

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

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

Home for Father's Day and My Recovery

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

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

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

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

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

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

Homeward Bound...?

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

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

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

A Room With a View

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

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

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

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

And my new view... 

"Enjoying" Abdominal Pains and Mouth Sores

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

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

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

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

Happy, Happy, Happy Birthday to Me!

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

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

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

Matt and Kanani and I...

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

The Package the cells arrived in...

The people who delivered them to me...

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

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

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

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

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

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

Under Way with Transplant #2

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

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

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

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

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

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

Someone asked me recently...

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

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

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

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

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

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

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

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

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

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

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

An Update Because It's Been A While

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

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

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

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

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

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

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

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

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

The News We've Been Waiting For!

WE'VE FOUND A DONOR!!!

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

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

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

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

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