19 minute read
When Life Hands You Lemons - Part II: Dan Hoyt
When Life Hands You Lemons
a multi-part series by Dan Hoyt
Hospital - The First 36 Days
In retrospect: in writing this story about my experiences, I looked at all the Facebook posts I used to update family and friends. This brought back a lot of memories, both good and bad. It’s hard to believe how positive I was through this experience. But at the time, I felt I had two choices in accepting my fate and the future of my treatment: worry about the outcome or give in wholeheartedly, putting my trust in my doctors and nurses to get me through successfully. I chose the latter. It was the right choice, and it made the whole journey a bit easier and much less stressful.
The first week seemed easy. Besides the start of brain fog (chemo brain) and the beginnings of what felt like exhaustion, treatment went well, with little to no side effects. But at the start of week 2, Dawn had to make the first Facebook update. I had started to develop mouth and throat sores (mucositis) that took this big, strong man to his knees. You see, I’m a big guy:
The First Day - Dan Hoyt with his wife Dawn.
Let the chemo begin.
6’ 2” and 248 pounds at the start of all this. That weight changed dramatically during my time in and out of the hospital, but for the most part, I took a beating. The chemo did what it was supposed to be doing, but the side effects were starting to kick my butt. Fevers, headaches and mouth and throat sores made it impossible for me to eat or drink.
I continued to remain positive and loved my nurses and oncology team. But of all my nurses and doctors, one stood out. Ellie. She was the first nurse I had when we arrived that first day. Luckily, I ended up having her as my main day nurse the first few days, and we hit it off right away. We ended up having a lot in common. We knew a lot of the same people in Dubuque, Iowa, a place Dawn and I lived and raised our children for 15 years before moving back to Mo-
Ellie with Dan.
line, Ill., our hometown. Ellie was a wonderful nurse. She took exceptional care of me during those first 36 days, but it wasn’t until a few months later, when I returned to the hospital to receive my stem cell transplant, that she happened to be my nurse on that first day yet again. This was quite the surprise, since she had accepted a new job at the University of Wisconsin while I was receiving my chemo treatments and was supposed to be gone by then. It turned out there was a delay in her start date, and she had a few days left before leaving. We were so thankful it worked out.
Little things like this happened throughout this overwhelming experience: unexpected, unpredictable things that seemed to go in my favor. Not everything went my way, but enough happened that there was an obvious tilt in my favor.
I had an amazing oncology team.
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Dr. Sutam (Grerk Sutamtewagul) and his team were wonderful. They jumped right in with both feet to do all they could to cure me and extend my life. AML (acute myeloid leukemia) is a rare cancer, like my PV (polycythemia vera). AML makes up only about 1% of cancer diagnoses each year, while PV is even rarer, affecting less than 1% of the population (.057% of 1%). Even crazier, people with PV have a rare chance of developing AML within 10 years of diagnosis, with those odds affecting around 5% of patients. I can’t seem to win anything when I play the lottery, but I somehow was diagnosed with a very rare blood disease (PV) that developed into AML. I may still have a chance at that lottery after all.
Joking aside, sometimes I feel like I’ve already hit the lottery. When you go through what I have, you learn just how lucky you are. I’m especially lucky to have a wife who loves me as much as she does. She’s done so much for me since all of this started. She’s been an amazing caregiver, wife and friend. I can’t thank her enough for all she’s done. I’m so lucky to have such an amazing family that was always there for me ~ there to help Dawn through the thick of it and to show their overwhelming love for me while I fought this terrible cancer. How lucky I am to have so many friends support me, pray for me
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Lemons - Part II easy ~ it was going to be Dawn. But my number 2 was much harder to choose. I ended up deciding on my brother in-law, Jeff (Hoss) Mendoza. He means more to me than just a brother in-law, he’s a great friend and someone I could always talk with about anything. We decided to have Hoss come for a visit to give Dawn a break from her long commute. It was a bad day for me. I had terrible mouth and throat blisters and could barely talk. I had been battling fevers as well but was well enough to see Hoss. While sitting there, I was messing with my beard and pulled out a large chunk of hair. It came out with no effort and was kind of cool. I tried what was left of the hair on my head, and it, too, came out with no effort. I told and do what they could to help dur- Hoss to grab some, but he wanted ing this trying time. I feel like the no part of it. A few minutes later, luckiest man in the world to have my hospital phone rang with inforso much love and support in my mation about my possible stem cell life. Most people will never know donors. Additional blood work and how much so many people care for tissue samples were taken when I them. I know, and I can’t thank arrived at the hospital, and they them enough for sticking with me during my journey.
Something else that seemed to go my way happened on one of my worst days in the hospital, though that turned out to be one of the best days of my life. With COVID restrictions, I was only allowed to have one visitor per day, from 3 p.m. to 7 p.m., and I could choose only two people in all to be on my list of visitors. My number 1 was Dan and Hoss 118
were put against a registry to try and find a single match from someone around the world. When the person from the registry told me I had 19 potential matches from the world registry, I nearly fell out of my chair. I had the phone on speaker, so Hoss heard as well. We looked at each other, and I instantly broke down in tears. Hoss also teared up, and we could no longer speak. I managed to thank the person on the line and hung up, not believing what I’d just heard. Some people never find a match and lose their battle with this horrible cancer, but for some reason, luck was on my side. I had 19 potential donors. Unbelievable!
Throughout my time in the hospital, I was showered with gifts from family and friends. As mentioned earlier, my daughter Logan gave me a huge bag full of presents labeled for each day I was expected to be in the hospital, 30 total gifts and letters. I still don’t know how she managed to get them ready in such a short time. We found out
about my diagnosis on Friday, April 23, and she gave me the large bag on Sunday, April 25. For a normal person, this might be doable, but Logan was six months pregnant, writing her thesis for her master’s degree, studying for her finals and working a full-time job, but somehow, she found the time to come up with 30 presents wrapped and ready to go for her father. Every day was thought out so well, with funny meanings behind each gift, and it gave me something to look forward to when I opened them each morning. I’m still amazed at what she accomplished, but I assume it was a good coping mechanism as she tried to process what I was about to go through.
I also received some thoughtful gifts from many families and friends and a few letters from people I hadn’t heard from in years. The letters and gifts meant a lot to me as I spent my long days in the isolated hospital room. Some friends from Dubuque found out I needed more chemo, which was going to extend my stay in the hospital, so they put together an awesome present that really helped me get through the extended time there. They sent me 19 pairs of socks with a card that said “Cancer Sucks,” but “Sucks” was crossed out and replaced with “Socks.” It made the days much easier to get
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through, and as part of my daily posts I shared the pair of socks I wore that day. You wouldn’t believe the fun themes each pair of socks had. I loved them, the nurses and doctors loved them, and they really helped the last weeks speed by.
Reading my old Facebook posts has been difficult, but to tell my story, I needed references to what I went through. A lot of what I read, I had forgotten or hidden somewhere in my mind to protect myself from all the ugly. I want to share one of my posts I shared that showed my struggle. I was as upbeat as I could be in my daily posts, but I also wanted to make sure everyone knew my struggle was real.
May 22nd (Morning)
I wanted to share another side to my Leukemia battle. I make it look easy, but it’s not. It’s a struggle each day. It’s hard, painful, emotional, and just plain sucks.
The struggle is real, I have tubes hanging out of my right bicep, they provide the things I need to fight
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this cancer, lifesaving blood and platelets, but they also can pull blood from them (two times a day) and pain relief through my pump. But they get tangled and are a pain when trying to sleep. I’m tethered to this 6 wheeled IV cart, everywhere I go, it goes with me. But so does a picture of my grand babies, they are with me everywhere I go. I get my blood sugar checked 4–5 times a day, both hands, both sides of my fingers have small holes in them. I get insulin 4–5 times a day, in my stomach or the back of my arms or the fatty part of my thigh every day. We must keep moving the location of the shots because of bruising. I have to brush my teeth 4–5 times a day with a soft toothbrush, rinse with a saltwater rinse,
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magic mouth rinse as it’s the only relief to the blisters in my mouth and my throat. I can only talk for a short period of time because the blisters in my throat start to hurt so bad. Some days it’s so bad and the fevers are so bad, I sit and shake and shiver and don’t want to talk or text or communicate to anyone. It’s even a struggle some days to talk with my number 1, Dawn, the love of my life. But I find a way, I fight though it and do all I have to do so she knows I’m okay. I’ve lost all my hair, I’ve lost 10 lbs. to date, at times I’ve lost my dignity, my spirit, and my joy, but I find a way to battle back. I have so much to live for. My 4 wonderful kids, my 5 amazing grandchildren, my immediate family, and my friends. Dawn and I have so much more living to do, that I find a way to fight back.
The struggle isn’t over, it’s just getting started, but there is no quit in me. “Woe is me” is not in my vocabulary. It’s a struggle some days to get out of bed, but I do it. Between 6–6:30 each day I get out of bed and stay out of bed. Some days I only make it to that chair, but I’m up. Most days I’m in my room for 23 + hours a day, it can feel like a prison, but I find a way to be active do different things to mix it up when I can motivate myself. I force myself out of the room to walk, some days I can get 1 lap
in, some days only enough to walk to the end of the hallway, but I get out of the room.
I’m sorry for the Debbie Downer post, but I wanted you all to know there is a bad side to all of this and that each one of you helps me though the day. YOU help me get out of bed; YOU help motivate me to keep going. Your prayers are being answered and it’s amazing to witness it daily.
Thank you for all you do, stick with me and I’ll show you what fight I have, and we’ll get through this together.
Love you all!
It was a difficult and emotional post to write, and what made it worse was my original post was lost while proofreading it on my iPhone. My phone rebooted before I could post it, and I felt sick to my stomach and broke down in tears. I phoned Dawn and told her what happened. I knew I needed to get this message out, but I wasn’t sure
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I had it in me to write it over again. Somehow, I mustered up the courage to do it. It wasn’t exactly like my first thoughts, but I said most of what I wanted to say.
Another post I read concerned one of the gifts from my daughter. It was one of my favorite books, The Gift of Peace (Personal Reflections) by Cardinal Joseph Bernardin. I was reading the chapter about his cancer and how he handled things, and he spoke of prayer. I shared a lot of the same experiences he did. Surprisingly, he was also very open about his cancer and his experiences (the good and the bad) in the hope it would help others in some way. I wrote how I had struggled with prayer since starting this cancer journey. I had not lost my faith or anything; I just wasn’t feeling it didn’t know where to start. Cardinal Bernardin mentioned when he was at his lowest and in the most pain he, too, struggled with prayer. He wrote,
“Pray while you’re well, because if you wait until you’re sick you might not be able to do it.” How true that turned out to be. He mentioned how he devoted the first hour of each day to prayer and one was the Rosary. I had prayed portions of the Rosary, but never the daily mysteries. I wrote how I decided to try and started with the Joyful Mysteries, which includes a lot of prayers, including 53 Hail Marys. The Rosaries really helped me get back to prayer and helped fill some time in those long days. Dawn brought me some Rosary beads so I could use them to help with my counting. I used my fingers those first days, and that wasn’t easy.
A lot of my family and friends supported me each day with prayer. I truly believe the power of prayer got me through a lot of those rough days. I was amazed at some of my accomplishments while deep into chemo. I got out of my room daily for walks. My personal best was 16 laps around the transplant ward. That put me somewhere close to 10,000 steps, and this was after 10 days straight of chemo, receiving a blood transfusion, wearing an N95 mask and tethered to a six-wheeled chart. Looking back, it truly amazes me.
Eventually, they knocked out enough of my cancer and my blood numbers increased enough to let me out of the hospital. My first stint was 36 days, and on the last day I was able to wear my Captain
America socks (hero socks). My friends and family all looked to me as a hero for being strong enough to get through the rough treatment. That last day was bittersweet. As much as I wanted to leave, I was going to miss my nurses. I knew I’d be back to see them again, though. I remember writing and reflecting on what I missed most during those 36 days in complete isolation. I missed the sunlight touching my skin, breathing in the fresh air and the touch of my family in a hug or in a kiss from my wife. I missed the fluffiness of our goldendoodle, Nellie. I also missed the taste of coffee from my Keurig, the softness of my recliner as I drank my coffee and the comfiness of our outdoor patio and sounds of the birds and critters in our backyard. We all take so many of these things for granted, but I so missed them when I couldn’t have them.
For all I went through in those 36 days, I really had no concept of what was still to come. Yes, I was weak and fighting each day to get stronger, increasing my blood numbers to a point where transfusions were no longer needed. Just when I started feeling better, though, they would hit me with another round of chemo. This went on for the next three months as I waited to receive my stem cell transplant. But the worst was yet to come, as you’ll soon find out.
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