Another Month Gone...

Well, it's January 31st. Somehow the first month of the year is over. I'm thinking it has something to do with getting older that time is just flying by.

I mentioned in my last post that I'm beginning to teach voice lessons. I'm up to 6 students, but still have room for more. My website and my Facebook page are doing well, and my voice studio (where I now sit) is done. I'm teaching lessons on Wednesdays and Thursdays for now. If my schedule becomes such that I need to add another day, I will, but for now I'm keeping it to just two days a week. I'm really happy to be able to be teaching again.

Jenna is upstairs in what used to be Isaiah's room, and Isaiah is sharing Michael's room with him until the upstairs project is finished. The upstairs project...yeah... So, we were going to put in two rooms - now it's one very big room that'll be put in. It'll measure about 19' X 12'. The boys will share the room, and the basement room they're in now will become the play room. I'll be doing some of the work myself...at least the work that I know how to do and that isn't dust-intensive. That includes the framing of the wall and the closet (I'll have to get someone else to cut the wood to avoid my exposure to the sawdust), the painting, and the installation of the ceiling fans. Someone from our old ward will wire the electrical because I don't want to electrocute myself or burn down the house. We'll also have to get someone else to do the drywall and texturing because that can be a very dusty project. Unfortunately, our tax return will be about $1,000 less than we thought it would be, so the project will get started and done a little later than we had hoped. We'll be using income from the voice lessons I teach to buy the materials, so I need to get as many students as I can as soon as I can. I wish we had the money to just hire someone to do it all, but it's just not realistic right now.

I talked about my 1/2 marathon goals in my last post. Instead of doing the Utah Valley 1/2 on June 14th, I'll be doing the American Fork Canyon 1/2 on June 21st. It benefits cancer patients, and there are some others from East 8 who will be doing the race, so Noelle and I figured it was the better race to do.

If you didn't know already, CANCER SUCKS. On Monday, Noelle and I moved Jenna and Isaiah from where they were to where they are now. I took Jenna's mattress and went to carry it up the stairs, and I had to stop and take a break about 1/3 of the way up the stairs. I just wasn't strong enough to do it in one shot. I got kinda upset...no...really upset. It just hit me how abnormal my "new normal" is. Because I've been feeling so healthy lately, I just don't think about how different my strength levels are until the reality of it smacks me in the face. I threw a little temper tantrum right there on the stairs, pounding my fist into the mattress a few times and burying my face in my hands. It can be pretty hard to accept what cancer has done to me sometimes.

Last night was the awards banquet for last October's LLS Light the Night Walk. It was held at the Market Street Grill in Cottonwood. Great event. Really good food. Next year, I want to earn an award for my fundraising efforts. I've already named my team for this October's walk: Philpott's Fighters. Not really original, but it works. I think my fundraising goal is going to be big...like $10,000 or something like that. I have more time and energy to work on it and plan a strategy to hit a very aggressive goal. Katie Kersys, who is the campaign manager for Light the Night, says she'll work with me on my goal and how to reach it.

I've also tentatively scheduled another Be The Match donor drive for Saturday, May 31st. I'm still waiting to hear back from Trina, who's the lady at the National Marrow Donor Program who helped organize last summer's drive.

On the health front, things are going pretty well. We're tapering my Hydrocortisone pills, hoping that my adrenal gland kicks in and starts producing the hormones it normally would produce on its own without the help of the Hydrocortisone. After tapering the Hydrocortisone, or possibly as we taper it, we'll also taper the Cyclosporine I'm on. That's my immuno-suppressive drug that's limiting the possibility of GVHD. Because I had some GVH of the gut in the hospital following my transplant, there's a good chance I'll get some more GVH as we taper the Cyclo. We don't know for sure, but there's a good possibility of it. We'll see...

That's about it for now. I just need things to do to keep me from going stir crazy. I've already filed my taxes and organized my office/voice studio. I don't know what to do now. It's hard to not have an 8 to 5 for almost a year and still be looking ahead to another year of the same. Here's hoping I can stay out of a straitjacket. =0)

Mid-January Update

It's been a while, so I figured it was about time for an update.

I've got high blood pressure. Not on my own, but my cyclosporine (my immuno-suppressive drug) has given it to me. As we taper the cyclo gradually, we should see my BP drop to more healthy levels. In the mean time, though, I've now got a BP medicine on board. We'll see how it works.

I need a goal for physical health/fitness right now to get me off of my butt and working out. A number on a scale has never been enough of a motivator for me. I really don't care if I weigh 190 or 220, as long as I and my doctors are convinced I'm healthy. So, here's what I've decided to work towards: I've decided to walk at least one, and possibly three half marathons this year. As a reminder to anyone who may be reading this and has forgotten, the myeloma has made my bones very, very brittle, so I'm not allowed to run...ever...unless my life depends on it from a safety standpoint. I'm currently considering the following:

• June 14 (Saturday) - Utah Valley Half Marathon - This one starts in the canyon and ends in Provo. Nice, gentle decline in elevation.
• August 16 (Saturday) - Park City Half Marathon - Starts and ends at the same location. 460 feet up and 460 feet down. This one's at a higher elevation, so it may be the toughest of the three, but it's still not very bad with elevation gain/loss.
• September 27 (Saturday) - Layton Half Marathon - The flattest of the three courses. Starts on the bridge to Antelope Island in the Great Salt Lake, and ends in Layton.

The biggest challenge with doing these races is the logistics of it all. They all start in the morning, and with 5 kids, that can end up being a challenge on a Saturday. For example, the Utah Valley 1/2 requires that participants get on a bus from the finish line to the starting line by around 4:30am. That means I'd have to leave my home by about 3:00 in the morning to get there, sign in and be on the bus in time. That's no problem for me, but what about my family? I think the thing to do is to find at least one person to walk each race with me, preferably someone from the Salt Lake valley. That way, I can get to the race in time (with my walking buddy) and my family can come later to cheer us on along the course. Noelle wants to walk at least one with me, but that would mean that someone else would have to bring our kids to cheer us on. I'm not sure how we'll be able to do this all, but it's very important to me. Noelle and I were planning on doing the Layton one last year, and then my diagnosis came. Perhaps someone will read this and decide to walk one or more of these with me and the logistics element will go away. I don't know. I've started training pretty early. I walked 3.1 miles Tuesday morning in the "balmy" 44 degree weather. I need to do 2 miles today and begin a regimen that will have me ready (but not burnt out) come June. More details to follow as we get closer.

I've decided it's time to begin teaching voice lessons again. I was teaching before my diagnosis and loving it, but with the diagnosis, and specifically the stem cell transplants, I had to stop. I'm ready to get back on that horse again. I've developed a Facebook page (facebook.com/PhilpottVocalStudio) and website (philpottvocalstudio.wix.com/philpottvocal). In just a few days, I've gotten over 100 "Likes" on my Facebook page (still hoping for more...) and a couple students for voice lessons. I won't be doing this full-time. I'm just doing it (and not charging anywhere near what other voice teachers are charging) mostly for the creative outlet. We're going to convert Jenna's bedroom into my studio - probably this weekend if anyone wants to help us move the piano =0) - and building two bedrooms in what is now the upstairs entertainment/play room. That will probably/hopefully happen by the end of March. I have a basic floor plan ready for the upstairs conversion, but NONE of the know-how to do the work myself. Also, with the dust, etc from the construction, I think my doctors would have a cow if I were to attempt to do the work myself. It's just putting up a couple walls, two closets, and doing some electrical work. We also need someone who knows how to do tile to do the tile in our master bathroom so Noelle and I can move back upstairs. If anyone has any experience in either of those fields, or knows someone who does, please let us know. We'd love to get this done by the end of March, like I said. 

I'm feeling pretty dang good. My energy levels are good and I feel pretty healthy. I've battled a cold and also something new to me...Human Metapneumo Virus. the virus was only discovered in 2001, from what I've found online, and acts much like the common cold. The problem is it's closely linked to RSV, which is a bad one for me to get with no immune system. So, I've been very careful around others, 'cause I'm contagious, but also, I've been extra careful about not going anywhere where I could get worse. We're planning to take our family to Disneyland the final week of February - just over 5 weeks away!!! I can't afford a hospital stay which would possibly prevent me from going. Our tax return and income from the voice lessons I teach should pay for the trip with some money left over to help us pay for the renovation upstairs.

We traded in our beloved 2005 Chevy Suburban for a 2012 Dodge Grand Caravan on New Year's Eve. The decision was purely logical (more legroom for the growing kids)/financial (lower cost of ownership every moth with HUGE gasoline savings, lower mileage, less maintenance/repairs, etc. I could see us driving to Disneyland with the Suburban that has over 96,000 miles on it and having it break down somewhere along the way. On the other hand, the Caravan has just over 35,000 miles on it, so the chances of a breakdown are minimal. Also, the Caravan is still under warranty til we hit 100,000 miles. We got AN AMAZING DEAL on the Caravan from Larry H. Miller Dodge in Sandy - I highly recommend you go see Nate there if you want/need a new car. Let him know John Philpott sent you, and he'll take extra special care of you... 

There's really not a lot else to discuss at this point. Things are slowly returning to a point where I feel more and more "normal" every day. The biggest challenge for me is remembering that I have NO IMMUNE SYSTEM. I still can't go where I want to go or do what I want to do. For example, all seven of us, along with my brothers David and Jeff and their families, have the Pass of All Passes from Seven Peaks. On this coming Monday, which the kids have off of school for Martin Luther King Jr's birthday observance, people with the Pass of All Passes can get into the Utah Grizzlies (minor league) hockey game FREE. I can't go. My whole family will be there except me. It sucks rotten eggs. I wanted to do a half marathon in Las Vegas in November, but I can't because there's nowhere for me to stay in a hotel because they're all germ-ridden, filthy holes. I have some friends in Vegas, but I can't expect them to clean their home to the degree that it would need to be cleaned for me to crash with them. I still can't shop where/when I want to shop or eat at restaurants at normal meal times. Life isn't easy, but it's a life. It's so much better than being six feet under, and I have to remind myself of that regularly to keep the proper perspective. Here's to being above ground. =0)

Darned Prednisone!

Sorry to anyone who may be reading this...

This post was originally written on August 27, 2013, but I just corrected a typo, and the post was re-dated with today's date. Lame...

Well, it's been a couple weeks, and I figure about time for an update. I'm writing this from my iPad I got for my birthday/Father's Day because I'm not allowed upstairs. My medicine regimen currently has me on 110mg/day of a steroid called Prednisone. Dr. Peterson, the head of the BMT program at LDS Hospital, says a low daily dose of Prednisone is 7.5 mg, and I'm almost 15 times that amount. With all the fuss over steroids in pro sports, I figured steroids would make me stronger, but they make me weaker...extremely weak. I think I've actually gotten weaker - not stronger - since my release from the hospital on July 12. Due to this weakness and the fear of falling down the stairs and breaking my neck, Noelle and I had to move downstairs from our master suite into Abby's room and now Abby has the master bedroom and bath a week or so ago. My doctors are tapering the level of steroids I'm on (we began at 180mg/day), but we'll get down to about 80 or 90mg/day and have to slow or stop the taper until we feel like my body is ale to progress without GVHD getting in the way. Gratefully, there have been no signs or evidence of any GVHD in the eyes, skin, gut, etc. since a couple days following my release from the hospital last month. Just some dry skin (no rash) and that's it. 

So, for now, I have once-weekly outpatient physical and occupational therapy appointments, along with weekly clinic visits with a nurse, a PA or NP, and a doctor (or two) and bi-weekly blood/lab tests. In mid-September, I'll have another bone marrow biopsy. That will be a big defining moment for me, as it will show weather we are in or heading into remission or if the cancer is back. If I'm in remission, that's good, and we continue to just check in with my body through the regular clinic visits and watch for Graft vs. Host Disease. If the cancer is back in force, then there's really nothing that can be done, as we have already exhausted our treatment options with the two transplants. I'm optimistic, as my body has responded very well thus far to everything we've done to/for it. I came out of three months with no "maintenance chemotherapy" following my autologous transplant with only 1% cancer cells in my blood. Dr. Ashe said that was much better than expected. Now that my donor's stem cells are producing my blood, we can hope that it's all clean. If not, we'll cross that bridge when we come to it.

It will be about a year before I begin to feel "right," as I'm without an immune system and have to wait until next May/June to receive my first immunizations. Yes, I'll have to be immunized like a baby, starting from scratch. MMR, tetanus, everything a baby gets. I have to start over. 

A few weeks ago, I was blessed to have another visit from "the guys." They were here for about 2 1/2 days, and it was great. We ate some really good food and had a great time hanging out together. We went to a Salt Lake Bees game, took a walk along the Jordan River Parkway. Oh, also around Silver Lake, now that it's not covered in snow like it was back in March when they came then. Tanks for your visit, Mike, Steve, Tim and John. Here's a shot of us up at Silver Lake. 

Well, somehow, I can't think of anything else to write right now, perhaps other than this... The Philpott family is and has been extremely blessed through these past ten months. We recognize and acknowledge the hand of the Lord in our lives every day. He has been so good to us in sending people to our aid when we have most needed their help. From gifts and food left on our doorstep during the holidays to annonymous deposits into a trust account that was set up for us at Key Bank to people coming over just to check in and say hello and let us know they're thinking about us. We're grateful for it all. It just goes to show that God uses us as His hands and feet for Him on earth.