Acute Myeloid Leukemia: Patricia's Story
Patricia Reed
Liberty Township, Ohio
Acute Myeloid Leukemia
Transplanted in 2018
Many thanks to The Ohio State University Comprehensive Cancer Center and the American Society for Transplantation and Cellular Therapy and Incyte for helping us share Patricia’s story.
Prior to your diagnosis of acute myeloid leukemia, you had a long career in a field that wasn't always easy for women. How would you describe your life and career leading up to your diagnosis in 2018?
I was an IT consultant for a small firm. I loved what I did. I started in technology soon after college when there weren't many women in IT; I dealt with bad bosses, bad clients, and awkward coworkers for years. But in my late 50s, I finally got the chance to work for two of the smartest, nicest men you could ever meet. I felt my whole career had been leading up to this job. I was very invested in my work and in the company.
And if you had asked for five words to describe me, "healthy" would have been one of them! I liked to walk and do yoga. My husband, Bruce, and I did The Great Ohio Bike Adventure, which is 50 miles of riding daily.
Like for many patients, your transition from"normal" life to cancer treatment happened virtually, overnight. How did it unfold and how did you react?
It was shocking.
For some months, I’d felt worn down and I was getting these odd persistent nosebleeds. I assumed it was from the dry air in planes, because I was traveling for work, crossing three time zones twice a week. I thought I was just exhausted.
But then, on a Wednesday night, I was flossing and my mouth filled with blood—not a little, but like a gash had opened. I had these tiny dots under my eyebrows, too. I was traveling so I just tried to ignore it. If there was a word for the opposite of hypochondriac, that’s what I would be because when I read that those dots can be a sign of leukemia, I just thought: Well, I don’t have that, so what else could it be?
The next day, a Thursday, I worked as usual and then flew home. While I was changing planes, I talked to my sister, who told me she was in pain and her husband was taking her to the ER. I wasn’t too worried because if I’m the opposite of hypochondriac, my sister could be… a catastrophizer.
But when I got back home, I went to a doctor to be checked out - a blood test and an EKG. That night we went out to dinner to celebrate my 60th birthday. At dinner, my phone started blowing up, but since it wasn’t my sister I wasn’t answering. Finally, my husband’s phone rang. It was the nurse practitioner from the check-up I'd squeezed in that morning. When I got on the phone she said, "You have to go to the James [Cancer Hospital] RIGHT NOW. And I said, “Well that doesn’t sound right, and my dinner has just been served. Can I go later? She said no—if anything happens, you’re not going to make it to The James. I’ll never forget, one of the birthday cards I’d opened at dinner said, “When all hell breaks loose, you know you had a good birthday”
That news must have been a lot to process emotionally.
It was shocking, really shocking. The lady at the admissions in the ER at The James was so kind. I must have sounded skeptical when I told her why they had me come in, and she said, “Oh sweetie, if they sent you here, it’s probably true.” She was so sweet, so kind.
I texted my boss on Saturday morning from the ER and told him I wouldn't be in on Monday, that I had received a diagnosis of leukemia. I was so overwhelmed and angry. My boss asked to call, and I said no—I knew that if I heard his voice, I’d cry. I thought to myself, "I have to go deal with this fucking cancer." I had left work on a Thursday, the day before, and I literally never went back.
This was an exceptionally fraught time given that your sister was also getting difficult news. Can you describe what it was like facing health crises together?
Within days of my diagnosis, my sister Karen was diagnosed with colon cancer. We’re a competitive family, so I told my brother, "I got my diagnosis first!" It was nice, in a weird way, to be sick along with my sister, because we each had someone, in the other person, whom we could talk honestly about what we were feeling. Often our appointments were on the same day, we could call and say, “How were your liver numbers?” So we shared that experience. But later, it was hard to celebrate my one-year transplant anniversary while she was entering hospice.
You moved quickly to treatment and then to stem cell transplant. Can you describe those first weeks in the hospital?
There were days I was really depressed, thinking two weeks ago I was rushing to catch planes, and now I’m in bed totally debilitated. How is this happening to me? I used to drive by "The James" and never even glance at it. When I was told to go there, I had to use Google Maps. But the people there... Every single person was incredibly kind and competent.
One nurse brought her paperwork into my room just to keep me company while she was working. I am not that good with people. But the nurses and staff were consistently nice to everyone, and it’s not easy to be nice to people who are suffering, and short tempered. That takes a special kind of person, and there are SO MANY of them there!!
I was in the hospital right up to Christmas, and one of the doctors dressed up as Santa. I mean, it’s been a long time since I believed in Santa, but it was so moving. Another doctor would bring fresh Krispy Kreme donuts! I was thinking, hey if there’s a chance you’re gonna die, why not have a hot donut?
During this time, beyond the staff, where did you find strength?
My husband, Bruce. I absolutely would not have made it without him. He did it all: he challenged the insurance companies; handled the disability paperwork; and sat with me every single day. And my friends—people I’d lost touch with because of work travel just came out of the woodwork with pizza and ice cream. I felt cocooned by them.
Your stem cell donor was a young man. What did his gift teach you about human nature?
It humbled me. My donor, Austin, was a young man who did a cheek swab just because his nursing-student girlfriend (now his wife Rebekah) asked him and his buddies to do it. He was a perfect match. How many young men do you know who – if their girlfriend said I’m doing cheek swabs, bring your buddies down – would do it? But they all did! And he was a perfect match and just a genuinely nice person.
When I was able to contact him, I called to introduce myself and to thank him, and we’ve been in touch ever since, usually texting and exchanging cards. Meeting him was more emotional than I expected. I mean, how do you thank someone who saved your life?
When you were finally able to meet, how did you thank him?
I wanted to find the perfect gift for my donor. To me, water is life. I wanted to mix the concept of water and blood
and so I thought of a water pitcher. There’s a famous pottery place in Cincinnati, and I called them to ask for a custom piece. At first, they said they couldn't meet my timeframe, but when I told them the backstory, the artist agreed to do it quickly. When I went to pick it up, I was sobbing. I told them, "I’m the only one in the showroom crying, so you know it’s me."
The pitcher has an oatmeal color with a red wash at the bottom—symbolizing how water and blood are life-sustaining. On the bottom, I had "New Life" and my transplant date etched. I actually got the date wrong! I put the 6th, but when I met my donor, he was wearing a pin showing he donated on the 4th, which means my transplant would have been the very next day – the 5th! I had to laugh about getting my own "birthday" wrong.
I’m not an emotional person but I was sobbing when I met my donor, and since my eyes don’t work anymore, my tears were coming down my nose. It was so weird.
You’ve spoken about a unique physical symptom involving your eyes. How has that affected your recovery?
I have extremely dry eyes because of GVHD (graft-versus-host-disease). My eyes don't produce tears or oil anymore. At one point, I wanted to pluck them out of my head; the pain was constant. But, after a lot of work and reflection, I’ve reached a point of acceptance. This is my "normal." I’d rather live with these eyes than lose my sense of taste, which was a risk with some of the infusions I tried.
Can you talk about what helped you reach this place of “acceptance” many wish for?
I worked with a woman named Kristen, a life coach, via Zoom. She had me do things like journaling and drawing my pain—pressing a crayon deeply into the paper. Because of the GVHD, when we first started working together, my eyes were a constant source of agony. She had me visualize "having tea with my eyes." She helped me see that my eyes were "taking one for the team.”
Now, I’ve reached a point of acceptance. I use special lenses with liquid in them to see comfortably for an hour or two. But I’ve moved toward the mindset of: "This is MY normal, and I’m ready to move on."
Any final reflections?
I want people to know that when I drive by the hospital now, I wave to The James. And I tell everyone there: "It’s gonna be okay, one way or another. We’re gonna be okay."
As one of the premier cancer hospitals and research institutes in the United States, The Ohio State University Comprehensive Cancer Center – James Cancer Hospital and Solove Research Institute is home to one of the nation’s leading Blood and Marrow Transplant and Cellular Therapy programs. Since its inception in 1984, the program has grown to be nationally and internationally recognized for the caliber and expertise of its physicians and staff. Additionally, the nursing team has been nationally recognized multiple times for exceptional patient care by the American Association of Critical-Care Nurses.
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.
Incyte is a Wilmington, Delaware-based, global biopharmaceutical company focused on finding solutions for serious unmet medical needs through the discovery, development, and commercialization of proprietary therapeutics. For additional information on Incyte, please visit Incyte.com and follow @Incyte