Well, it's been a few weeks. I guess it's time for an update. Hmmm...
At my clinic visit nearly four weeks ago, a test was run to look at my Kappa and Lambda light chains. In simplest terms, these light chains are markers in the blood that can be a sign of Myeloma. If the Kappa-Lambda ratio is above a certain level, it's a good indicator that the Myeloma has returned. The test was done on the 11th of February. It takes about a week for the results to come in. That was a week of nervousness for me. Finding out on the 14th that Rebecca's Leukemia had returned didn't help settle my nerves either. Finally, on Monday or Tuesday, the results came in and there was no phone call from the BMT unit. Noelle and I looked at the results and thought we understood what they meant. The ratio looked totally different from when I was diagnosed. As far as we could tell, everything was fine. Unfortunately, I was still worried. Why? No good reason. Noelle had to talk me off the ledge, so to speak. Finally, when we had our pre-vacation clinic visit on the 21st, Dr. Hoda was able to confirm what Noelle had been telling me for days. I was relieved and felt a little foolish for having been so worried even after the results were in.
This past Tuesday, I had a good clinic visit. My numbers were all great, even my liver numbers, which had been "tickled" at my last couple clinic visits. I guess the only number I'm concerned about is my weight. Ugh. I've been picking up a pound here, a pound there, and now I'm really not in good shape. I need to exercise regularly, starting tomorrow. Anyway...my doctors have begun the long-awaited taper of my Cyclosporine. That's the immuno-suppressive drug I've been on since leaving the hospital last July. As a reminder, the reason we're suppressing my immune system (my donor's immune system, actually) is to avoid GVHD (Graft vs. Host Disease). My donor's immune system can attack various of my systems, such as the gut and GI tract, the skin, the eyes, the liver, the kidneys, the heart, etc. Basically, it can view my different systems/organs as foreign and attack them, similar to how a patient's immune system can view an organ recipient's new organ as foreign and attack it. So, the good thing about tapering my Cyclo is that I can begin to have a functioning immune system. The bad thing is I can have GVHD and be miserable. I had some GVHD in June while in the hospital following my transplant. Unfortunately, that's a good indicator that I'll get it again. We tapered my twice-daily dose from 125 mg to 100 mg, and will continue tapering gradually over the next several months. Slow and steady gives us the best chance to catch and deal with any GVHD symptoms as they come little by little, rather than all at once, which could throw my body into a tailspin.
I've had really low energy this week, and I'm not really sure why. I've been really tired during the day and have fallen asleep every night except Friday without my sleeping pill. Huh.
Over the past two days, Noelle, Abigail and I moved back into our original rooms. It was an even bigger project than moving all our furniture and other "stuff" because Noelle had promised Abby that when she moved back into her room Noelle would paint it. It's a bright blue now. I mean really bright. Noelle is an amazing, multi-talented woman. She does so much for our family. I feel like an absolute worthless bonehead sometimes. Anyway...I'm happy to be back in the master bedroom. David (my brother) is almost done tiling our shower, too. There's just one little thing that needs to be done to finish. For a year and a half, we've been in this home with no shower in the master bathroom, and that problem is almost in the past. Thank you, David! The shower is beautiful!
The last week of February was our family's long-awaited and much-anticipated vacation to Southern California and Disneyland to celebrate my remission. It was EXACTLY what the doctor ordered. Not really - my doctors were pretty nervous about it and about me being around so many people. Anyway, we drove down on Saturday, February 22, the 1st anniversary of my autologous transplant. We left around 5:00 in the morning, and got to North Hills around 4:00. We visited Tim and Kelly (Tim is Noelle's cousin) for their son Camden's birthday party. After a couple hours, we left for Oceanside, where my parents have a timeshare that we were able to use (THANKS, MOM AND DAD!!!). We got in around 8:00 or so, checked in and crashed.
On Sunday, we went to La Jolla, where Noelle's sister, Blair, lives. We hung out on the beach for about 6 hours and the weather was perfect. Brenda, an old friend from Stockton and Sacramento, came to the beach with her boys while her husband, Matt, was in work meetings. So we hung out with them til about noon (I'm not exactly sure - I was napping when they left), and then Blair came with her housemate and best friend, Jo. They brought us lunch and hung out with us for a few hours. After I took my nap and ate some lunch, I decided I wanted to take a walk along the shore. My feet, ankles and legs were swollen and hurting from my blood pressure medication, but I didn't care. On my walk, I was able to reflect a bit on why we were there and how tremendously blessed my family and I have been throughout our cancer journey. Feeling the warm sun on my back, and enjoying the water lapping at my feet, I felt an outpouring of love for and from my Father in Heaven. He has been so good to me and my family. I am so blessed to have my head six feet above ground in stead of six feet under. The statistics for people with Plasma Cell Leukemia and Multiple Myeloma are not good. Every day I wake up with air in my lungs and a pulse in my wrist, I buck those statistics. Sometimes I lose sight of that. Well, the beauty of it all was not lost on me in that 20-minute walk along the shoreline. Sunday evening, an old friend from BYUH came to our timeshare to have dinner with us and visit for a while. Jennifer was in Showcase with us our first year at BYUH, and was Noelle's best friend (and roommate for a while) while I was on my mission. It was so good to catch up with her and laugh a lot. She is so fun.
Monday was day #1 at Disneyland. I love that place! I got my "Disability Pass" when we got there. It was awesome. With the pass, someone who is unable to wait in line with everyone (like me, who can't be surrounded by tons of people breathing their germs on me) can go to guest services booths around the park and tell them which ride they want to ride next and get their pass marked to go to the ride in a certain period of time based on the current wait time for the ride. When you go to the ride at that time, you get to walk through the Fast Pass entrance or through the ride's exit and basically walk onto the ride without waiting in line. It was fantastic. By the time we took a break around 3:30 to walk to the Rainforest Cafe for dinner, we had already done all the must-do rides that were open. When we got to the restaurant, we had a big surprise for the kids...Erick and Linzi Crans had driven down that day, met us for dinner, and were going to hang out with us Tuesday through Friday. The kids (ours and theirs) were all SO excited. Dinner was good, and after dinner we went back into Disneyland to ride more rides and re-do some of our favorites.
Tuesday was day #2 at Disneyland for Noelle and the kids, and a scheduled rest day for me. I'm really glad we had the foresight to do it that way, because after a full day of walking around Disneyland, my feet were swollen and desperately needed a break. That morning, we called the BMT clinic and asked if I could forego my blood pressure medicine for the duration of the trip in hopes that I could get some relief from the swelling. We were told that as long as I checked my blood pressure every day and it stayed below a specific level, I could leave it out of my daily pill-popping routine. Well, the Southern California coast must be good for blood pressure, because mine stayed well below where it needed to be throughout the rest of the trip. In fact, in the week we've been back from our vacation, it's still staying below where it needs to be without my medication. Yippee!!! So, while the rest of my family spent the day at Disneyland with the Crans family, I put my feet up in bed, watched a couple movies, spent some time massaging my feet in the jacuzzi, and just had a really nice, relaxing day.
Wednesday was a scheduled day for the beach and pool. Abby, Michael and I went to the San Diego temple that morning to do some baptisms for the dead (If anyone reading this is confused, please click here to clarify). It was a particularly special experience this time, as we had 21 of our own ancestors for whom we were able to perform baptisms, rather than for people whose names were had by the temple. It was the first time I have ever performed baptisms for my own ancestors who I had personally researched and prepared for the work. It was a very emotional experience for me. I felt their presence there as their ordinances were performed. I knew that they accepted those ordinances and were so happy. Michael and Abby both had a neat experience as well. After getting back from the temple, the Crans family came and we went to the beach to take some family pictures. We got some good ones. Then Erick and I went and played 9 holes of golf. Using clubs we borrowed from the course and the fact that it had been 9 months since I last swung a club made for a long nine holes. Erick and I played "best ball" and still didn't score very well. But we did have fun, and that's the most important thing, right? Wednesday night, we took some more pictures at the beach and made tacos for dinner. It was a good day.
Thursday was our day for California Adventure. We got my disability pass for the day, met the Crans family, and were off. The first thing we wanted to do was go to the new Cars Land and ride the Radiator Springs Racers. Wow. So fun! Then our families split up and we went to the Aladin show with Noelle's Aunt Gail. She got us VIP seating, so we were able to go in first and have our pick of seats. After the show, we waited in the lobby to meet with one of Gail's clients who Gail helped get into the cast of the show about ten years ago. She surprised us by bringing out all of the principles from the show with her - Aladin, Jasmine, Jafar, Iago, the Genie, and the Magic Carpet. We talked for a couple minutes and then took pictures with everyone. So cool. The rest of the day was great. My swollen feet were worth it.
Friday was a scheduled beach/pool day, but the weather was bad. I mean REALLY bad. High winds and rain didn't stop Noelle and the kids from going to the pool and jacuzzi in the morning, though. Seriously, I think they're nuts. I just hung out in the room. Friday afternoon, Noelle and the kids met Jennifer and her kids to see The Lego Movie. The kids really enjoyed it; Noelle thinks it's been over-hyped and that made it less enjoyable for her. She says it's good, but not THAT good. Friday night, the Crans came over for dinner, and the kids all watched a movie while the adults talked. We love the Crans so much and wish, as Linzi has said, that Nevada would disappear so we could be closer. Sorry to our friends who live in Nevada - there's just SO MUCH wasted space that you have to drive through to get from Utah to Californina.
Saturday was our day to travel home, but Noelle decided it was more important to spend just a little more time enjoying the pool, seeing that the nice weather had returned. We hung out at the pool and jacuzzi for a couple hours before heading home. It made for a long, long day, but we were OK with it. It had been a good vacation, and Noelle and I really enjoyed the "down time" we scheduled for the family. Thank you, Southern California, for the respite from the day-to-day life in Utah and for getting me out of the Salt Lake Valley for the first time in a year and a half.
Well, that's about it for now. I'm grateful to know that even though I'm doing pretty well, people are still praying for me on a daily basis. The truth is that with cancer, you're never really "out of the woods," so to speak. It can always come back. We can hope, pray, have faith...but the cancer is never completely out of your life. When we finished our clinic visit on Tuesday, Noelle and I spent some time visiting with Houston and Denise, and Rebecca, in their respective rooms on East 8. Rebecca said some things that struck me. One of them was that she had made the decision to live as though she's going to live, not as the walking dead. That's where goals come into play. Making plans for the future isn't something a person does when they know they're about to die. Noelle and I are planning a week in Park City with our kids this summer - the kids don't know this, so please don't say anything to them. I'm going to take Noelle to Paris, France for her 40th birthday next year. I'm going to walk three 1/2 marathons this summer. These goals will help me focus on the future that I will have...not that I might have...that I will have. It's not about the time you have in your life...it's about the life you have in your time. There's something to think about.
