So 2020 was an interesting year for me. The world-wide pandemic brought its depressing weight, and changes to everything we do, costing all the energy it costs to change. But as a family, for the most part, we weathered it pretty well. The kids were really worn down by school changes, elevated homework levels in particular, and isolation (whether two of them wanted to admit that last one or not, it was true nonetheless).
But I still had a job that paid well, remote work had its' perks, and our garden and yard were awesome, thanks to all the time we spent in them:
We were able to enjoy quite a few famous Bountiful Sunsets from that deck in our back yard -- not a bad way to spend time.
We also managed a fair number of outings to the great Utah outdoors, including some great local hiking--
from Mueller Park:
To our own Holbrook Canyon:
To Alta:
To the Uintas:
To seeing a comet from out on the dark sky side of Antelope Island.
A little further afield, we managed to get to Bryce Canyon:
Grand Staircase Escalante:
Capitol Reef National Park:
and further, to the North Rim of the Grand Canyon with my in-their-80s folks.
We even made it to Glacier National Park -- a place Kathleen and I loved as young marrieds, and which was a joy to show to our kids:
So quite a few bright spots, right? So blessed during a Covid year that was so hard on so many. We were even settling in for a nice Christmas, and had managed to buy everything everyone wanted (we were hoping it would provide some relief to the pressure the kids felt from the Covid lock-downs). Life has a way of changing things on you pretty quickly though, as I was soon to find out.
On December 21st, I woke up at 5:00 a.m. feeling horrible. As I opened my eyes, the entire room spun uncontrollably around me. I could not stand or even lift my head very well. I managed to crawl to the bathroom and proceeded to empty everything that was in my system into one receptacle or another. It brought no relief to the spinning. All I could do was crawl back into bed and close my eyes, because that seemed to relieve the nausea slightly. This condition continued unabated throughout the day that Monday, occasional vomiting interspersed amongst fiercely closed eyes. I was too uncomfortable to really sleep much, so it was a lot of time sitting there in the dark feeling incredibly light-headed and just wrong. All I knew was that any movement brought on more retching, which by afternoon had become dry heaves (for the most part).
Meanwhile, Kathleen was calling doctors, to see if I could get in to see one. All of them told her to take me to the emergency room, because I might be having a stroke. We tried to get me out to the car at 2:00 p.m., and I heaved so violently that we had to stop and put me back into bed. Finally at 5:00 p.m. we tried again, Kathleen essentially carrying me to the car because I couldn't even tell for sure where to put my text step. We started down the hill and, as you might think, every turn and jostle was excruciating. We got half way down the hill and realized I didn't have my wallet, which I would need, so back up we went. We started back down again, and realized half way down that one of our tires was very low on air (9 pounds - basically flat). That prompted a twisty route to Maverik for tire air, and a serious conversation about maybe just going to Lakeview, the local hospital, rather than to IMC in Murray. (We don't really trust Lakeview, but at this point, I was about ready to just take that so-much-shorter drive.) After talking about it though, I didn't feel like I should go there, so we continued on to IMC, leaky tire and all.
They admitted me quickly and efficiently, took blood samples, gave me some anti-nausea medications, and set us in a room to wait for the MRI machine to come available. It took about an hour, and the procedure took about that long again. Conclusion: no stroke (good news) and a preliminary diagnosis of Vestibular Neuritis, a viral infection of the inner ear, causing inflammation and severe vertigo, which could last for weeks or even months. They prescribed prednisone and anti-nausea medicine. (Even with all that, it would be two full weeks before I could really do much, and it would be another six weeks before I trusted myself to drive.)
But that was not the real news. While I was out being scanned, the emergency room doctor came in and told Kathleen that my bloodwork had come back with an off-the-charts white blood cell count, with other anomalies. The hematologist on call that night at IMC just happened to be my good friend Bill Nibley. I had known him since college at the University of Utah, as well as grad school days in Washington DC. He relayed through the emergency room doctor that I had leukemia, and that I needed to see him the next day. In that moment, I became a cancer patient, something that I had never pictured for my life.
I told Bill that I couldn't see him the next day because I was just too sick to move. I continued like that through Christmas and into the next week -- days where I couldn't move my head much, or keep my eyes open for very long, and nights where I couldn't sleep because of the prednisone. Vertigo is the most debilitating thing I have ever experienced -- no reading, no streaming, just audio books (on John Lewis, one of my heroes), some music, and a lot of closed eye time in my bed. I remember a hazy Christmas Day, a blessing from my Elder's quorum presidency, my kids reading to me in bed (what sweethearts), but other than that, just a lot of time to think.
I didn't know much about leukemia at the time, but I thought in those first few days that perhaps I would have three to five years to live. As you might imagine, that is pretty thought provoking, and of course your mind races all over the place, to thoughts like:
"Well, I have had a really good life, I have been so blessed, I guess this is ok, seems like I am due."
"Gee, I hope I have maybe been important to someone."
"I wish I had done more to help people."
"How could I not have spent more time with my kids and taught them more about what matters?"
"Does my wife really understand how much I love her, and how sorry I am for being so inept (e.g. male) for most of our married life?"
"I really need to see _________ again" (listing basically every friend I've ever had, and I have a really broad definition of who I believe to be my friends).
And of course, there are the big questions, the foremost being: "do I really believe in God?"
As I thought that last one, the first thing that came to my mind was a scripture, Job 13:15: "Though he slay me, yet will I have trust in him." In that moment, I felt the spiritual comfort of knowing that I had faith, and that I would trust in the Lord. I have been blessed in my life with a number of remarkable experiences in the Church of Jesus Christ of Latter Day Saints; seeing its' goodness has given me faith, and I am so grateful for that.
In short, I've learned pretty profoundly that Faith, Family and Friends are what really matters. That probably is not surprising news to anyone, but boy, is it ever true.
Fortunately for me, that is not the end of this story. I was able to see my friend Bill on December 28th. (Earlier that month I had sent him a Christmas card with a handwritten note stating that "we need to see each other more next year." I told him as I entered his office that this was NOT what I had in mind.) Bill sat me down and explained that if I had contracted the form of the disease that I have, chronic myeloid leukemia (CML), in the 1990s, I really would have had three to five years to live. But in 2001, drug-makers had received approval for a drug, Gleevec, to treat it. Studies have shown that as long as patients could tolerate the drug (it is a life-time treatment, one pill every day), they would have the same "co-morbidity" (i.e. live as long as) the general population did on average. Bill said in his almost 20 years using the drug, he has never had anyone die of CML.
I can't tell you how much it meant to have Bill there to tell me it is going to be ok. I have already been so blessed in my life, and to have this news delivered by a good friend was simply incredible. Many, many times since, I have thought about all the people who walk into Bill's office, or one like it, and have no great options. One of my best friends, Marilyn Muir Jager, found out she had cancer of the biliary ducts in her liver and was dead six weeks later. My heart aches for each and every person that has faced that. I have no idea why I got to be the lucky one who has a successful treatment and they do not. I wish I knew that answer. All I know is that they are courageous and amazing and deserve all the care and respect possible. Cancer really does suck.
Even acknowledging the huge blessing of a medicine that can treat my form of cancer, I still have a whirlwind of emotions and fears, irrational and otherwise. I feel so much more fragile than I did before. What's next? Or what if I go to the doctor for one of my monthly visits, and the drug suddenly no longer works on me, the cancer has broken through and it is just a matter of time? I am also scared of losing health insurance, and I hate the thought of being tethered to an expensive drug for the rest of my life. I am also hyper-sensitive to all the negativity that surrounds us so quickly and easily these days--I am just so tired of all the meanness, the lack of empathy and understanding, the hang-you-for-a-wrong-word-context be-danged ethos, it drives me crazy. Can't people see life is way too short for that? Can't they see people need understanding and help, not condemnation? It wears on me hard lately.
I also fear people will treat me differently when they find out -- as damaged goods, no longer vital, not able to perform, not part of the solution; dismissible. It also rips me apart to think that friends or even Kathleen and the kids might view me as a downer, as a reminder of the bad that could happen at any time; or the ultimate horror, of not being able to pull my weight in the family, or be the energetic, optimistic father and husband, brother and son that I so want to be. These things haunt me in more moments than I care to admit.
Yet as I look back on the series of events that initial week -- the fact that we made the decision to continue on to IMC; that my friend Bill was on call that night, of all nights; that a case of vertigo (which is completely unrelated to the disease) helped me to catch the cancer before it got too out of control; that there is a miraculous cure for my particular form of the disease; that I felt an assurance of my faith through it all -- I really feel someone was watching out for me. Honestly, even being so sick with vertigo was a blessing. I had to get the rooms to stop spinning before I could think about dealing with leukemia.
Through this experience I have learned some other, very important things, like the fact that I married the best woman on the planet -- Kathleen has been an absolute rock; she is truly amazing. (Of course, I knew this before in spades, but it was quite a reminder.) I have heard my siblings tell me they love me more in the past five months than in the prior fifty years, and even though I knew it all along, it is still a wonderful thing to hear. My kids have been super sweet in their attentiveness. My friends have been so supportive and kind, willing to just forget about it and laugh like nothing has changed. And I don't hesitate any more to tell people how I feel about them because I've had a stark reminder that things can change in a hurry. There is a lot to be said for feeling, even irrationally, that it can all go away in an instant -- it makes you appreciate an awful lot about the moments you have and the people that are in them.
Even without these recent events, I am 58, and realize I will be lucky to have 20 good years left on the planet before things start to turn pretty south. FAITH, FAMILY and FRIENDS really are what matters -- I hope I can be good about spending as much of my time there as I can. In addition, I have decided that whatever time I do have left (and hopefully it is long!) should be organized around seven additional guiding principles, represented by seven words:
LOVE. Serve, reach out, forgive, support, think of others and help them, give up judgment. Look to lift. Always err on the side of kindness. Appreciate who I am with in the moment. Care deeply for the people you love, then find more of them.
BELIEVE. Trust God. Have faith and grow it. Do the work to help you do that. Be positive. Remove negativity from your life. Imagine that things will work, that good wins, that you can do it, that adversity can turn to your benefit and make you stronger and more compassionate, that there is a reason for what happens in your life. Take the leap, whatever leap it is.
DO. Don't just think; act! Move, create momentum. Bodies in motion tend to stay in motion; bodies at rest tend to stay at rest-- that applies to people as well as objects. I think too much and act too little. I really need to change that.
GROW. Try new things. Learn, develop, get out of the comfort zone on a regular basis. Make mistakes and look like a fool sometimes, so long as it teaches you something.
FOCUS. Be purposeful in what you do. Think about these principles and organize your life around them. Don't dawdle, dally or be distracted -- you don't have time for that. Distraction is the great immobilizer of our time. Don't spend your time listening to negative voices, or distractions -- focus on what matters.
GRATITUDE. Choose to be grateful as often as is humanly possible. Don't think "why me;" think, "what am I supposed to learn?" Recognize how much amazing good you take for granted every single day.
HEALTH. Make it the priority it deserves to be. Care for your body like the one of a kind miracle that it is, like you have no other, like it needs everything you can do for it and then some. Eat the right foods, don't let a day go by without exercise, fresh air and sunlight.
I don't know if these principles will help anyone but me, but I know they are important principles -- I only hope I can act on them like I should.
To wrap this long post up, I have been on Gleevec for about five months now, and while not crazy hard, it is not a cake walk. Known side effects are gastrointestinal discomfort and distress, as well as muscle cramping. I have definitely checked the boxes on all of those. I was known by my chiropractor as "Mr. Rebar" even before taking the drug (because my back muscles and hamstrings were already so tight and tense all the time). As you might imagine, that has not gotten better. My toes have been basically numb since the day after I started taking the drug, and the balls of my feet cramp up pretty fiercely on a regular basis, usually at night in the middle of a sound sleep. I try to complain, but when I do, my kids remind me that "it's better than dying, dad." (Maybe I should have spent more time on teaching empathy, and a little less on telling the truth?)
But the really good news is this: my blood has returned to normal levels and functions through the treatment, and I am infinitely grateful for that.
