13 minute read
When Life Hands You Lemons: Dan Hoyt
When Life Hands You Lemons
a multi-part series by Dan Hoyt
Introduction
This is a story about my battle with acute myeloid leukemia (AML), from diagnosis to stem cell transplant. A lot of family and friends wanted regular updates, and updating them individually would have been impossible. I decided to keep a daily journal and post updates on Facebook with photos of some of my day-to-day successes, problems and complications. “The good, the bad and the ugly,” I called it.
For the most part, my updates were upbeat and positive, with a sprinkling of humor. I ended up having so many followers and received so much overwhelmingly encouraging feedback that it blew me away. They said I was an inspiration, and they are looking at their lives differently by seeing what I went through and how I handled it. Some said I should write a book and share my positive inspirational journey. I started it but never finished. It wasn’t until a good friend
Dan and Dawn Hoyt at Hoover Dam. 125
suggested I write about my experiences in short form and share it through their monthly publication, Tidewater Times. I hope you like it, find some inspiration through my experiences and take away some snippets that can help you in some way in life or if you happen to encounter a bump in the road.
Pre-diagnosis and what was yet to come
I remember asking the nurses two questions: “Will I lose my hair?” They answered yes. And, “Will my hospital room have good Wi-Fi access? Because I have to be able to work.” They answered yes but gave my wife a funny look, and Dawn responded with an eye roll. I later asked my wife what she was thinking, and she said, “Not those questions.” She was thinking, “Will I live through this? How long does he have to live? Are we financially ready for this? Insurance, savings and all that serious stuff.” Looking back, I guess I was diving in with both feet and was ready for whatever was to come. My overwhelmingly positive attitude even shocks me today.
Dan and Dawn at Hoover Dam with in-laws, Kim and John. 126
I hadn’t been feeling well since February of 2021. It felt like I was in the beginning stages of a flu that never seemed to come: body aches, tired and just feeling “punky,” as my wife calls it. After we both received the COVID vaccine shots, we felt a huge weight off our shoulders. We, as most people during the pandemic, hadn’t gone anywhere in over a year. We planned a trip to Las Vegas with Dawn’s sister and brother in-law, Kim and John. They had never been to Vegas, and we were old pros, so we were looking forward to showing them the town and doing some sightseeing, something we never took time to do.
I knew I was dealing with being punky and tired, but I was ready to get out and felt I could power through anything. We did a lot of walking, but I always managed. That was, until one long day and
extended night on the third day of our trip. We walked all day and visited the Pawn Stars TV show’s Gold and Silver Pawn Shop. We then took an Uber to a great little Mexican restaurant called Tacos El Pastor down the Las Vegas Strip, did some more walking through the Winn Hotel, the Palazzo and the Venetian, and caught another Uber back to the hotel. That evening, we went to see a show (The Australian Bee Gees) and had a late dinner at a quaint Italian restaurant (Battista’s Hole in the Wall). The final plan was to do a short walk from there to see the water show at the Bellagio; halfway there, my legs locked up. I just couldn’t go any farther. I told Dawn what was happening and then asked Kim and John if they minded if we took an Uber back to the hotel. They agreed, and we called it a night. Nothing like that had ever happened before, but it was just the start of a crazy month and what was yet to come.
Diagnosis and what comes with it
I had been feeling tired for months, and I figured it was just my PV (polycythemia vera), a rare blood disorder (cancer) that I’d been diagnosed with the previous year, on April 7, 2020. To treat it, I was getting regular phlebotomies to reduce my red blood cell counts.
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You see, with PV, I had a mutated gene (JAK2), that caused my bone marrow to make too many red blood cells. When I was diagnosed, my hemoglobin (HGB) was 22.8 per deciliter and my hematocrit (HCT) was in the high 50s. These excess cells thicken the blood and slow its flow, which can cause serious problems such as a stroke or blood clots that could lead to a heart attack or an aneurism. I was prescribed the chemo drug hydroxyurea and was getting weekly phlebotomies until I reached an HGB of below 15 and an HCT of 42. Once I hit those numbers, I was taken off the hydroxy and continued with regular phlebotomies: biweekly at first, then once a month and then every 6 weeks. When I went 16 weeks without needing phlebotomy, in addition to not feeling well, it was time to call my hematologist. My HGB was dropping instead of rising, which is not supposed to happen in someone with
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PV. That was a Monday. The hematologist was able to get me in for an appointment the following Friday, April 23, 2021.
My wife, Dawn, and I drove to the University of Iowa Medical Center in Iowa City. We came in an hour early for bloodwork. When it was time for my doctor’s appointment, my CBC blood results had already come in. We have an application on our phones called MyChart, and we get results at the same time the doctors and nurses do. We looked them over and noticed my WBC was over 26—high, but not too concerning to the doctor. He was in diagnosis mode, trying to figure out what we should change with my PV treatment. New drug? Bone marrow biopsy to do a deeper dive? He left the room to see if we could get a biopsy that day when my phone pinged again with a new blood result, (the differential). We were looking through the results when I noticed a strange number. Blasts were supposed to be <=0, but mine were over 17,000! A moment later, the doctor came in with a grave look on his face. No longer in diagnosis mode, he was now very serious. He said I had a very bad blood cancer called acute myeloid leukemia (AML) and would need to be admitted to the hospital ASAP for treatment. He said the nurses would get me set up for admission
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on Tuesday, April 27, which also happens to be my birthday. He told us I would be there for at least 30 days, which is when our heads started spinning. One minute we were talking about new treatment for my PV; the next we found out I have AML and would be going to the hospital for an extremely long stay.
The next few hours were a whirlwind. I received my first bone marrow biopsy with no pain meds besides the locals. I opted for Versed, a drug to help me forget the experience, but not taking the morphine was a mistake. The pain was bad; I have had seven additional biopsies since that day, and I took both meds (the cocktail) from then on, making it much easier to get through the procedure.
Next came the phone calls. The first was to my son-in-law Nick. He was watching our new puppy, Nellie, a golden doodle we’d had for only a week. She turned 9 weeks old on the day of my diagnosis, and we’d asked Nick to watch Nellie for a few hours while we attended my appointment. I called him to apologize and to let him know our appointment was going to take a few more hours than originally planned. I came right out with it and told him the diagnosis and the need for the bone marrow biopsy.
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Our new puppy, Nellie. He seemed as shocked as we were but handled it well. Next, I texted my boss and his boss. I let them know I wasn’t going to make it back to work that day and my diagnosis. I received a few encouraging texts in return, and I left it at that, still in shock. Over the next few hours and on our way home from Iowa City, I made a few more calls: to my father, my inlaws, my children and my siblings. They were hard calls to make, but being in a state of shock made it a bit easier, less emotional and more straight to the point.
The next few days at home were like a dream, Dawn and I didn’t know what to do with ourselves. We knew we needed to pack, but
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what, exactly? We didn’t get a list of suggested items, so we just winged it. My dad, brother and sister and their spouses all stopped by for visits. The children that lived close made special trips with their children to visit. It was a lot to handle, and all seemed to go in slow motion. I could see people walking around and talking but didn’t always understand what they were saying. The grandchildren were all having fun playing, but I could barely see them. They were just a blur. It was a surreal weekend, but somehow, we got through it.
I posted my first social media post with photos with my wife pre-haircut and post-head shave to get ready for what was to come. You can see on Dawn’s face that the stress was already setting in. I started to adopt a positive attitude, thinking I had a few ways to
Pre-haircut shot.
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go about this: with stress and worry or with complete trust in my doctors and nurses and remaining positive through the experience/ journey.
In the post, I asked for prayers from my family and friends and explained how we’d learned I had AML that past Friday. I told them how aggressive the leukemia was and how the doctors wanted to treat it quickly. For my 56th birthday, I was to be admitted to the hospital for a long stay to aggressively treat this nasty cancer. With that, I shared the before and after photos. I ended with one request: please pray for me and my family!
My in-laws, Carmen and Dennis, offered their help and flew in from Florida Monday morning. They stayed for a month and helped with Nellie while Dawn came to visit me daily in Iowa City. Their time here with Dawn was invaluable and helped immeasurably at such a trying time. Post-haircut shot.
The next day, Tuesday April 27, 2021, was the start of my journey. It was a rough morning saying goodbye to my daughters, Sara and Logan, and my in-laws. Before I left, Logan gave me a bag full of presents and letters. It was heavy, and with all the other stuff we were carrying we decided to bring it but leave it in our van so when Dawn came to visit, she could bring in the day’s gift or letter.
Next month we will focus on treatment, and what was yet to come.
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