Acute Myeloid Leukemia: Cynthia's Story

Cynthia Paine

Orchard, Colorado    
Acute Myeloid Leukemia
Transplanted in 2021  

Many thanks to Colorado Blood Cancer Institute, Sanofi, and the American Society for Transplantation and Cellular Therapy for helping us share Cynthia’s story.  

Cindy, can you tell us how you first began to suspect that something was wrong with your health?

Originally, I had this bruise on my right arm that just would not heal. My daughter insisted, "You have to get this checked out." I did the blood work at my doctor’s, and when I got the call back, I could hear in their voice that something was wrong. They said, "You probably have lymphoma. You need specialists, and we’ll get you in as soon as we can." But that appointment was a whole month later, and in the meantime, I needed a couple of blood transfusions.

At the time, I was living in Yuba City, California. I had recently gotten divorced after 41 years of marriage and was living happily, having been recruited by a company to be a tourism coordinator for my area. Then this happened!

Five and a half years later, I still don’t know whether to say I’m sick or not.

What was the appointment like, after a month of waiting?

My daughter flew in from Denver and went with me to UC Davis Medical Center, where I met Dr. Brian Jonas. The staff had told me to bring a small bag because I might get admitted that day. In fact, I never went back to that house again, ever. Before definitive testing, the initial thought had been that I had lymphoma, but ultimately it turned out to be Acute Myeloid Leukemia (AML). At the time of my official diagnosis, I was told I had only a 15% chance of survival.

Hearing a 15% survival rate must have been overwhelming. How did you process that? 

I was thinking, Really? I feel ok! And now you tell me this. Dr. Jonas said that if I chose not to do the treatment, I’d be dead in two to three months. So, I chose to fight.

At UC Davis, I did radiation and chemo. But I wasn’t doing well, so they recommended a BMT (bone marrow transplant). They told us there was no time to go through the registry for a perfect match. Both of my daughters got tested and both were 50% matches, but my daughter Kim, who lived in Denver, had no kids at the time. My other daughter, Katie, was married with a child. Given her life circumstances, Kim seemed like the right choice and she had done a lot of research.

How did you transition from UC Davis in California to getting your transplant in Colorado?

One of the nurses at Davis—a traveling nurse who had worked at the Colorado Blood Cancer Institute (CBCI)—recommended CBCI. The doctors and staff at Davis coordinated with CBCI, and it took just 30 days. I elected to have it done at CBCI because of the requirement to have someone with you for 100 days to take care of you – Kim lived there and it made sense to be near her.

All of this was in the middle of COVID. I couldn’t leave the facility or have any visitors while at Davis. I spent Thanksgiving, Christmas, and New Year’s there, and then in January 2021, I was told, "You’re leaving for Denver. We’re going to airlift you by private jet."

Once you arrived in Denver, what was the transplant process like for you there?

The strangest part of going through BMT was that I just didn’t feel super sick. My daughter always says, "Yeah, Mom, you were sick," but I wasn’t throwing up. I felt mostly OK! The day I was told I could go home, I got sick, but I think that was just nerves! I was worried that they would keep me, but they let me go to my daughter’s house, so that I could be nearby for tests and checks multiple times a week.

I’m a person who doesn’t really mind being in the hospital. One of the nurses heard I did TikTok videos for fun, and we started doing them right from the hospital! Even Dr. Maris joined in, and then night nurses got on board! We were literally dancing down the hospital halls. In those videos, I am... what a goofball! I wanted to make people happy, and to make myself happy. I like to make people smile.

Where do you think that positive, playful attitude comes from?

I get it from my almost 93-year-old dad, most of all. He’s outside on a riding mower mowing our lawn right now! My dad is amazing. He took the train out to see us this visit, and at some point I got a text that there were issues with the train, a mudslide on the tracks caused a 5-hour delay. When we were finally able to pick him up at 1 in the morning, he said, "I didn’t mind, everyone was nice, they gave us snacks and water!" The mudslide was in the middle of nowhere in the mountains! But he arrived cheerful. He looks at the positive side of the equation. And I try to be like that. 

Did this attitude translate into your approach to your recovery after the transplant?

As soon as I started feeling better I started to walk - a LOT - that’s my favorite exercise. In the hospital, I would set goals of walking 3 miles a day. Up and down and up and down the hall, I would use the erasable chart on the wall to record my steps all throughout the day until I reached 3 miles. I forgot some of that until I looked back at my phone pictures!

After I was discharged and living at my daughter's house, I set goals. I would walk as far as I could each day. I’d try to make it to the next flower and take pictures of each one. Dr. Jonas at Davis told me, "When you don’t feel like doing it is when you REALLY need to do it." That was about the transplant, but that phrase can apply to almost any part of your life. Always exercise. Walking is your best exercise! Always, always move your body.

You mentioned that you decided not to move back to California after your 100 days. How did that decision come about?

I had lived in the same town in California for 50 years, but sometimes change is good. After my 100 days of living with my daughter and her husband, I wanted to stay in Colorado. I’d been living in their basement, and when she offered to take me to the new home she was building, I said, "I love you, but I need to live on my own." 

Also, I loved my medical team immensely—I loved my PA, Ryan Nickerson; now we’re friends. I didn’t want to go back to California, even though I knew I’d miss my friends. So, I got my first-ever little apartment. It had a mountain view and was just a two-block walk from Target (more exercise!), with a park nearby. 

Now I’ve moved again, but I’m still in Colorado. I live in the country with corn fields and alfalfa fields behind me.

And in Colorado, you found a new creative passion—songwriting– can you tell us about that?

Music has always been a part of my life. My ex-husband and I owned a car and home stereo store for 41 years—we started out with 8-tracks and spanned the whole gamut! I don’t play an instrument, but I enjoy music.

Then one day, Ron showed me a new creative app he found Suno, I decided to write a song. I wrote the words and he produced the music and added to it a bit. Two days before my 70th birthday, I wrote another two! Country star Nate Smith was a friend of mine from early on. He went through the Paradise fire and made music about that. You’ve gotta make lemonade from lemons like Nate did! You’ve gotta go through the sourness to get to the sweetness. When we’re done here, I might go write that lyric into a new song!

You also met someone special during this post-transplant chapter of your life. How did that happen?

I met Ron after a year and a half of being healthy post-BMT. We had a lot in common, like car shows. I’d always wanted a convertible

 for as long as I can remember—ever since my dad took us kids to test-drive a little Datsun convertible, when I was 11 years old. Ron bought us a 2003 Mercedes-Benz convertible. He helps make my dreams come true!

Also, we both love music. He comes to every single doctor’s appointment with me now, and he’s someone you can really have a deep conversation with. He’s been there for me through thick and thin. God puts people in your life for a reason or a season—that’s another lyric for the lemonade song!

Looking back on your journey, what wisdom or advice would you give to someone who is just starting this process?

First, trust your doctors and don’t be afraid of those needle sticks. My mom was a nurse, and when I was 10 years old, she told me, "Those nurses are not sticking you to hurt you; they want to help you." 

Second, don't over-study your diagnosis. I’m not one to over-research; I trust the doctors. At least that's what worked for me. You are going to be afraid but know it’s going to be OK.

Lastly, allow yourself a pity party, but after that, don’t dwell on it. Give yourself a day or so to say, "Hey, this REALLY sucks right now." But after that, think positive, because positive thinking really affects your body. 

When you are given another chance to live, live it fully! The importance of happiness really sticks to you after being sick. You know how important being happy is, and it’s ok to show your happiness. Share it with others.

Listen to Cynthia's Song: Lemonade
Lyrics: Cynthia Paine, Music: Ron Rudolph, Vocals: AI Generated

Colorado Blood Cancer Institute (CBCI), a part of the Sarah Cannon Cancer Institute at Presbyterian St. Luke’s Medical Center, is a FACT accredited program that provides comprehensive hem-malignancy care including autologous and allogeneic stem cell transplant and is a certified commercial and research CAR T provider. CBCI also performs transplants for autoimmune disorders and multiple sclerosis. CBCI is celebrating its 30th Anniversary as a transplant program and has performed over 5300 BMT’s since its inception and we perform > 330 transplants annually. We are committed to scientific investigation of the most progressive treatments dedicated to curing cancer.    
 

The American Society for Transplantation and Cellular Therapy (ASTCT), formerly known as the American Society for Blood and Marrow Transplantation, is a professional society of more than 2,200 healthcare professionals and scientists from over 45 countries who are dedicated to improving the application and success of blood and marrow transplantation and related cellular therapies. ASTCT strives to be the leading organization promoting research, education, and clinical practice to deliver the best, comprehensive patient care.  

We are an innovative global healthcare company, driven by one purpose: we chase the miracles of science to improve people’s lives. Our team, across some 100 countries, is dedicated to transforming the practice of medicine by working to turn the impossible into the possible. We provide potentially life-changing treatment options and life-saving vaccine protection to millions of people globally, while putting sustainability and social responsibility at the center of our ambitions. Website: www.sanofi.com