It is long past time for an update on our lives, and in particular, living with my particular form of leukemia. (Sorry in advance for this long post, as I am hoping to cover all of 2021 in one big entry.) As I reported last, I am beyond lucky to have a treatment for this disease, and with it the hope that I may still live a long life, which makes me so much luckier than so many cancer patients. I am painfully aware of that, and it can make talking about my issues seem petty. And yet, my condition and treatment process has not been a quiet cruise down easy street. The picture above is Kathleen holding some of our medical bills in 2021. That is a lot of doctor visits, and I didn't do it just to see more of Bill (my Oncologist friend). Most of that represents dealing with side effects that come from the drug I take to control my form of leukemia. A little more on that later.
After recovering from vertigo, and starting on my drug regimen, we started trying to live a somewhat normal life. I made the decision to tell my boss, Crystal, about my condition, which concerned Kathleen immensely. But Crystal was great, telling me she would be there for anything I needed. I said I was determined to go on working as if nothing had changed, and she agreed she wouldn't mention it again, asking only that I tell her if it became too much to continue working. Luckily, while I was getting used to the medicine, Gleevec, we were still on Covid restrictions and working mostly from home, which helped me through those early days. The biggest early symptoms were severe leg and foot cramping, acid indigestion, and neuropathy in my feet (to this day I still don't feel my toes very well). That was accompanied by fatigue at times, so it was nice to have the flexibility to work from home as I became accustomed to the side effects of the drug.
By spring, I was feeling somewhat better, and headed out to our local wildlife refuge along the Great Salt Lake, called Farmington Bay, to see the bird life that congregates here in February and March.
I had spent many, many summers near here in my youth, working on my Grandpa Aldin's farms in the area, without ever realizing how amazing this spot could be. It was nice to be out there again.
In late March, we made our first effort at travel since my diagnosis, opting not to go too far (the world was still pretty much on Covid lockdown anyway), but to a place I had never been: New Orleans. Even though it is home to the World War II history museum (which both Alden and I really wanted to see), good food and good music, I had low expectations for the trip, thinking I would find a dirty, crime-ridden city o'er topped with booze and boozy people. But I was blown away at how much I really liked the place. I would go back in a heart beat.
We stayed right next to the French Quarter, and began our visit with Kate's favorite pass time -- a ghost/haunted house tour. It was a perfect introduction, wandering around the French Quarter at night with our guide providing insight on some of the cruel and crazy history of a number of its past residents. The stories of torture, murder, and miscarriages of justice did not disappoint.
The following morning found us in Jackson Square, eating breakfast at Muriels, listening to the amazingly talented buskers and jazz bands perform (probably my favorite thing on the whole trip) and going to the Louisiana State History Museum, a thorough and incredibly informative collection of everything from Andrew Jackson's victory over the British in 1814 to the tragedy of Hurricane Katrina.
Of course, there were also the obligatory fortune tellers, crystal balls, and local artists, adding color to the scene. But I will never forget how talented and fun the Jazz bands were that played that morning on the square. We sat and watched for 30 minutes, and I could have stayed for hours.
We decided it would be safest to show the kids Bourbon Street during broad daylight. It was tame by comparison to what I am sure goes on at night, or during Mardi Gras, but still the kids saw things that made their eyes open a little wider. . . .
It was fun to see their reactions.
Kathleen found a service called "Tour with a Local," and we hopped in a van (not the one pictured above, mind you) to drive all through the city, seeing the French Quarter, cemeteries, the Garden District, the central park (with the added bonus of eating Beignets at Cafe du Monde!) and the infamous Ninth Ward, among others.
But perhaps the best part was being introduced to a local street artist, BMike, and his amazing work, as well as seeing a Banksy nearby.
Later, we celebrated Kate turning 21 (which we did at least twice, because, well, eating in New Orleans . . . . ).
The following two days we turned our attention fully to the rich history in this place, first at the incredible World War II museum.
It has a good, but new and growing collection of WWII planes and arms like the below:
But the museum's real treasure lies in the hundreds of stories it has preserved and tells, such as those of the Medal of Honor recipients below:
There is literally a whole warehouse wall dedicated to Medal of Honor recipients and their stories. There are also many, many other individual accounts associated with each battle and campaign. I could have spent days in there and it would not have been enough. (In fact, Alden and I did go back for part of a second day -- the others passed -- but still did not finish reading everything we would have liked to read). It is a remarkable preservation of heroism and brutality, the very best that man can offer amidst one of the worst things he does, all in one place. I could not recommend it more highly.
We also visited another place displaying the best and worst that man can do, the Whitney Plantation. The magnificent home and its setting are beautiful and tranquil, but the whole focus of the Plantation is on the enslaved people that lived there, not the owners. The documented statements of those people, meticulously displayed throughout the plantation, are a forceful reminder of the horror that was slavery, and the shining humanity of the people who survived it. Here are some photos:
We also visited another beautiful plantation nearby, Oak Alley, which Kathleen and I had previously visited on our way back from law school in Washington DC, many, many years ago. Still beautiful, but after the Whitney Plantation display, it just did not feel the same.
I am grateful for places like the Whitney Plantation, telling the stories I never heard in school, which give me a much more complete understanding of my country and the issues it still faces. Like Tom Hanks (who tirelessly worked to help establish the World War II museum that so honors the best of my country) I am stunned that I was not also taught what is displayed at that plantation, and that I never heard about the Greenville and Tulsa massacres, or understood fully the extent to which Jim Crow damaged our African American brothers. It is hard to have to know such things about the country I love and admire, but so necessary.
As I hope you can see, it was really an amazing trip, and so worth the visit, a bit of a bright spot in what had been a really hard three-plus months for me.
I was soon to receive another gift of joy, when in a surprise Alfredo Maza Salinas and his lovely wife Rosa visited me from Peru. There is just no way to capture how special his visit was. I baptized Alfredo while on my LDS mission to Peru in 1982. Here is a picture of the two of us right after his baptism, way back in the day:
I don't know if anyone outside of my faith can really understand how much joy seeing Alfredo brought me. We had only known each other for a mere two weeks in Peru, thirty something years ago, but we are connected in a way that feels like the closest of family ties. We had shared a conversion experience together, and it is a bond so special I always view it as miraculous.
Alfredo reminded me that he was drunk when I met him, sitting on a street corner drinking with his friends. Apparently, I walked up to him and first thing declared, "You know what, you are going to be baptized." He (and his friends) laughed it off, but we set up a meeting, which he actually came to the next day. All these years later, as we sat together in my house for hours, he told me that he had been on a truly dark course, drinking a lot and beginning, with those same friends, to steal and head down a criminal path. But after our first meetings, he told his friends he would not drink anymore, and they left him, every one. Through that he stayed faithful, and changed his life. He met Rosa through the Church, served his own mission, (baptizing literally hundreds of people), has been a bishop (twice), caring deeply for many young Peruvians and families who adore him, and has indeed served in a stake presidency as a counselor to the President. He and Rosa have four kids, who have also served missions, and they are all so very happy in the gospel and with the life it has given them. Their faith is so very strong, and he is certain that he would have ended up in prison without that first, "chance" meeting.
There is simply no way to relate how happy this made my heart, and how great it was for him to meet my parents (who, on school teacher and medical transcriptionist salaries had paid for my mission), making all of that better life possible. (Picture below - you can also see how it touched my dad deeply to hear his story, and Alfredo to see my dad.)
We spent a few days seeing sites, including the Salt Lake Temple and some of the pioneer places in Utah that he had long wanted to see. I was amazed at how many Peruvians we encountered as we walked around, all of whom knew Alfredo. It was like he had this crazy radar that caused these people to come out of the woodwork. Here are a few pictures:
This visit almost didn't happen. Early in the pandemic, Alfredo contracted Covid. He was intubated and comatose in a Lima hospital for weeks. Of the 28 people who were intubated at the same time, he is the only one who survived. The story of how that happened is really an astounding tale of faith and miracles, but it is Alfredo's to tell. To say I am grateful for his recovery is a massive understatement, and his visit was a tender mercy where I very much felt God letting me know that he still cared about me, and that at least one time in my life I had done good. It was a wonderful gift to me so soon after contracting CML.
A little later that spring, Kathleen and I headed to the hills near our home for a couple of local hikes to see how I would do.
The routes were pretty steep (as it seems are all the routes on the Wasatch Front), and I found my legs just burned after stupid short distances, requiring many, many rest stops. But Kathleen was patient, the flowers were out giving us other reasons to stop, and eventually we even took a hike up North Canyon to the top where it drops down into Mueller Park, which ended up being a round trip of about six miles. So I felt like I was working into it, though it was a struggle. Apart from the burning in my legs, which occurred every time I headed up hill, I felt like my energy had recovered pretty well, thanks to the medication, and my respiration seemed pretty normal compared to how it had been prior to starting Gleevec. My feet still cramped up a lot in the night, often waking me, and continued to be pretty darn numb otherwise, but my stomach had settled down, and all told, I was feeling hopeful that I could live with the medication.
The rest of our spring and most of our summer were spent doing just normal living things. Keegan had a great role (John Brooke) in Little Women (his favorite theatre event to that point) at our local community theatre, CenterPointe (which is just fabulous at developing kids in theatre). Later he also had a role in Matilda with that same organization.
He excelled in Little Women, and got a huge kick out of watching his dad watch him kiss a girl on stage (he kept it a secret from me for two months just to get that reaction).
He also took a small ensemble role in his junior high musical, We Will Rock You, a somewhat goofy show based on the songs of Queen, but which of course had great and challenging music. Just four days before the one night the show was being performed, the lead broke his collar bone and could not perform. Keegan's theater teacher came to him and asked him to take the lead role, with significant dialogue and challenging Freddie Mercury songs to learn in that short time. After thinking about it for a couple of hours, he agreed, and began a marathon of work to get ready. He completely knocked it out of the park! It was such a hard thing to do, and here was my son scrambling and working and pulling it together and doing really well in a hard role. Here are some pictures from the event.
I was so amazed, and together with his other performances this year, we began to see what a budding talent he had -- he was really coming into his own as a musical theatre performer. He loved it, was getting better at it, and was making great friends. It really put a smile on my heart.
We also attended Alden's soccer games, his orchestra concert (he plays Viola, and is continuously improving in that), Keegan's band concert (base Clarinet), and hosted parties for Alden's thirty (or more) closest friends at our house.
We also really enjoyed just being around the house, from reveling in rainstorms,
to discovering it was also home for bats and tarantulas (Kate, our horror/haunted house junkie, was in heaven),
to just enjoying the sunsets (and moonsets!) from our deck. It is a wonderful place to be.
If, in my final years, I refuse to leave my house "over my dead body," you will know that I didn't just get it from my mother, there are some amazing reasons.
Summer also found us headed off to Lake Powell with the Moon clan, to rent a houseboat and do some water skiing. We started though, with a quick overnight at Goblin Valley State Park, which is awesome, particularly for watching shooting stars at night.
Lake Powell and environs were the vacations of my youth, and the fun and beauty of this place never gets old. I hope it survives the drought; the water was unbelievably low when we went, and I am concerned. (By the way, I curse every idiot environmentalist that wants to "drain" that lake. It is like stealing my childhood from me and denying one to my kids. Besides what we need is more hydro-power, not less, and in any event, the lake allows so many people to see the beauty of Glenn Canyon in ways they otherwise would not.) Here are a smattering of pictures of this man-made "sea" bounded by ancient sand seas, now hardened by time:
Of course, summer wasn't all sunshine and rainbows. Alden went rope climbing at a church youth event, and apparently forgot that once you got to the top, you still have to hold on to the rope:
That mistake would leave him with three broken bones in his foot that took months to heal, and required him to start school on one of those knee scooters (he even attended one school dance that way!). Keegan also had to undergo a bit of surgery on his knees.
So I guess I was not the only one incurring medical bills in 2021.
Still, we were able to make our annual trek to the Cedar City Shakespeare Festival, this time with both sets of Grandparents in tow.
And of course we enjoyed our season tickets to the Eccles theatre too.
As we headed into Fall, I was actually feeling pretty good. Still had cramping in my feet, but for the most part felt as good as I had since contracting the disease. Fall began for me with a long-promised trip to Yellowstone with my daughter, Kate (or Kat, for everyone but me -- I still can't get there). Back when she was learning to drive, I told her that when she got her license, we would go on a daddy-daughter trip to Yellowstone so she could get some freeway drive time in. Four years later, it was a little late for useful freeway drive time, but we took the trip anyway.
Yellowstone in fall is magical. The crowds are diminished, the cold air brings all the geysers and thermal features to life, wildlife is out fattening up for the winter, and you can usually find really crisp, bright sunny days. It makes you feel very alive.
We stayed in West Yellowstone, and feasted on some really good burgers our first night.
At Kate's suggestion (like me she is NOT a morning person), we decided to get up very early the next morning to head into the park. It turned out to be a fantastic suggestion.
We bolted straight for Hayden Valley in a bid to see wildlife. As we arrived, mist and fog rose from the river and nearby thermal features, blanketing the valley in fits and starts, with the morning sun beginning to shine through it all.
Bison were just stirring from their cold night's sleep, frost still covering their coats as they stumbled up and lethargically began to amble about, bellowing to each other from time to time, and just huffing otherwise.
Water fowl on the river murmured quietly to each other, and the fellow below bugled loudly to his harem on the hills below him.
The mist and the sun made for some spectacular moments, and Kate had to learn her mother's patience for my photographer's heart as it tried to get its fill at each spot.
all while the thermal features in the area performed their misty magic.
And of course there were beautiful mountain scenes to be had.
We rounded out the day stopping by the Grand Canyon of the Yellowstone and its magnificent waterfalls.
The next day we headed all the way over to the Lamar river valley, searching for more wildlife, and making a short stop at Mammoth Hot Springs on the way.
We were not disappointed in our quest for wildlife. No sooner had we left Mammoth than a bunch of these pronghorns showed up.
And this was the scene that greeted us on our arrival in the Lamar Valley.
But the real show, off in the distance, was this guy:
It's always a good trip to Yellowstone if you can spot a grizzly. We watched until evening light began to fade over the golden cottonwood trees that spotted the valley,
and then began our long drive back to West Yellowstone, arriving well after dark.
The following day, a Sunday, we decided to make a quick trip in to see Grand Prismatic and Old Faithful before heading home.
Steve Johnson had served as my first counselor when I was a Bishop in the San Rafael Second ward in San Rafael, California, 14 years before. We had spent countless hours together every Sunday in the Bishop's office, doing the work of the ward, and here we were, meeting entirely by chance, on a Sunday amidst God's wonders. I love Steve deeply. He made me a better man, and seeing him was yet another tender mercy in a year when I needed them. It was a great cap to an amazing weekend trip.
We returned home to some beautiful fall colors in our own back yard (have I mentioned that my back yard rocks?),
as well as in the hills behind our home, a short 20 minute trip, which had the added bonus of watching the sun set over the Great Salt Lake.
I spent the rest of September (and really intended to spend the rest of the fall) just chilling, with the kids starting their school year (Keegan's first at Viewmont High -- BONUS, his brother gets to drive him in the mornings!). But then I made a terrible mistake. I mentioned to a co-worker, Heidi Allred (a certified Disneyland fanatic with a PhD in all things Disney), that my kids had never been to Disneyland, and were now college and high school age. The look of horror I received in return will be forever etched in my mind, and the shaming began. As fate would have it, Kate wanted to go to the wedding of a college room mate in Orange County over Halloween weekend, and the pressure grew, this time coming from my wife (certifiably NOT a Disney fanatic, but not wanting to send her daughter down there alone). And so plans were made, with the unbelievably kind and supremely knowledgeable help of said Heidi Allred. Thanks to her, we had an amazing time. Here are a few pics from that trip.
The only downside of this trip was that here, I first began to notice that things did not feel quite right. I was out of breath just walking up the slightest of ramps, in a way that I had not been since starting on my cancer drugs. Of course my mind immediately raced to the thought that the drugs had stopped working, and the cancer was in resurgence (thankfully that turned out not to be the case, but for those who have had it, even treatable cancer feels like the perennial monster under the bed, just waiting for its chance to re-emerge). I made an appointment with Oncologist Bill as soon as I got home. Tests showed that the drugs were making me very anemic (diminishing my red blood cells along with the cancerous white ones) which seemed like the cause of my shortness of breath. The good news, however, was that my cancer was still in complete hematologic and cellular remission, which eased my mind somewhat.
The rest of the year was pretty chill. We had Thanksgiving with the Baileys at our house,.
And had an always excellent Christmas meal with the Moons.
In between, thanks to my friend Mark Farmer, Alden and I were able to watch my beloved Utes totally spank Oregon on the way to the Utes' first Pac 12 championship and Rose Bowl.
We also watched winter roll in from our deck.
Really a pretty great year when I look back on it, the continuing menace of Covid and newly discovered Leukemia notwithstanding. I also had been able to work at full pace for most of the year, and continued to enjoy my colleagues and the work we did. As December came to a close, however, I found myself increasingly fatigued as the anemia began to worsen, an issue I would be forced to confront during the first half of 2022, and which resulted in some significant life changes for me. But more on that in the next post, which I promise I will try to get done before the holiday season 2022 is done.
1 comment:
What amazing adventures! And the photos! Beautiful amazing photos. Thanks for sharing. I now have a few more things to add to my bucket list:)
Post a Comment