Spotlight a Survivor: Acute Myelogenous Leukemia: Robert's Story

Robert Grove

Columbus, Ohio
Acute Myelogenous Leukemia
Transplanted in 2019
 

Can you tell us a little bit about your life, pre-diagnosis?

I was enjoying life with my wife, Linda, who is my rock. I had just retired from teaching High School Science for 38 years. We don’t have children, but we have three Corgis.  And I was very lucky to love my career.  

For a guy who stumbled into being a teacher, I really loved it. When I got out of high school, I had more interesting bad jobs than I can list. I worked in a foundry and discovered that shoveling sand into a blast furnace was not for me. I worked in a candy factory. You name it, I did it. One day I was at my parents complaining that I couldn’t find something I felt good at and happy doing, and my mom said, “You are a Scoutmaster and coach little league baseball, have you ever thought of teaching school?” And that just fit.  

I started off wanting to be a social studies teacher, but I switched to science. I ended up certified in general science, earth science, biology, chemistry, physics, astronomy, meteorology, anatomy, and physiology and I’m ABD for structural geology.  

Generally, I’m not very introspective, but at some point, while I was sick, it dawned on me that teaching laboratory-based science provided people with a fun experience. I realized that in making it fun, I was beginning the learning process of future engineers, doctors, nurses and veterinarians. These young people had math/science brains to start with, so I'm not wholly responsible, but I was blessed to give them a positive beginning.

As a patient, did your science knowledge help you along the way?  

It did! From the very beginning. In March of 2019, I woke up one Saturday morning with a very sharp pain behind my left knee. I sat for a bit thinking and then told my wife, “I’ve got a blood clot.” She said, “Are you sure?” And I said, “I am. I’ve got enough science chops to know.” I told her we should go to the ER at Ohio State University Hospital.  

In the ER, an ultrasound confirmed I had a blood clot. They also took a lot of blood samples, and when the young doctor on duty didn’t want to say much, I thought: This is not good. Finally, the attending doctor showed up. He said, “We looked at your bloodwork and you’ve got leukemia. We’re admitting you to the 14th Floor, Hem/Onc.”  

Just the day before, I had felt fine! On the 14th floor, I was diagnosed with AML, which is nasty stuff… I knew how serious it was partly because of this popular TV weatherman, Chris Bradley. He was fabulous, a true science geek. When a significant weather system came, Chris would do these little informational shticks that I’d show to the kids. He made weather into a teachable moment. He had AML, and he didn’t make it, which was scary.  
 

You began your treatment by participating in a clinical trial, can you share what guided your decision to try a clinical trial?  

If I did the trial and it didn’t work, I could fall back on the chemo. But not vice versa. So, I agreed to the trial. I probably had 15 or 20 of the best minds in all of Ohio all thinking about my treatment. At the end of the first cycle of treatment my blast count went from 78 to 5 — I was technically in remission!  

Because AML tends to come back, if you want a great shot at a cure, you need a transplant. I was introduced to Dr. Sarah Wall, a BMT oncologist at The James. At that point, I was 67, I was pretty healthy, really active, a good candidate. Dr. Wall took me. And, five and a half years later, she’s still stuck with me.  
 

Can you tell us a little bit about what the experience of transplant was like for you, including how you found a donor?

They tested my siblings, and my brother was a 10 for 10 match! I went right in. I only spent 14 days at The James Cancer Center at Ohio State University after getting my transplant. When I came home, my biggest issue was blood incompatibility; my brother and I did not share the same blood type. Until then, I had weekly transfusions. Thursdays, I’d spend at the James, getting transfused. I’d feel great Thursday night, but by Sunday night, I’d feel kinda wimpy. This went on for a year and a half.  

Then, Dr. Wall attended a transplant conference where she heard about a new protocol at City of Hope. It had only been tried with three people… so the decision-makers at The James were cautious. They wanted her to try a more traditional drug on me, but she talked them into using this. I had a drastic turnaround. My blood type changed within two weeks!  
 

That sounds like a high point in a long, complex recovery. Was there a particular low point?  

My low point was in September of 2022 when I had a pulmonary graft-versus-host disease flair up. I had worked out hard that morning, but as the day wore on, I felt funkier and funkier. Linda and I were supposed to go out to dinner. For immune suppressed guys, earlier is always better, when the dining room is empty! On the way to the restaurant, Linda said, “You look like you’re feeling lousy, wanna go home and call The James?”  I agreed – I try not to be a macho guy who only makes things worse. The James has a 24/7 nurse practitioner hotline for transplant patients. The NP said, “You have two choices: call 911 or come in.”  

We went straight to the ER. I remember sitting down in a wheelchair. And then I don’t remember anything for nine days. During that time, I was in the ICU and, for five days, I was intubated! Finally, I got off the vent, it was a Sunday night. I was excited because on Monday I was going to have a swallow test, and once you pass one, they will give you liquids. I wanted a Coke, in the worst way.  

Then, in the middle of the night I felt so terrible I hit the call button. It turned out I had a belly bleed. They gave me seven units of blood. It was 4:30 in the morning, they called Linda and said, “You need to come.” I was circling the drain. When I heard Linda’s voice, I pulled myself to the surface. My ICU doctor, Dr. Lauren, said, “Can you hear me?”  I nodded. She asked if I was willing to be re-intubated. I remember thinking: I’m not ready to leave Linda. I nodded again. I felt a pinch, and then I didn’t remember anything for the next 36 hours.  

During that little “vacation,” I was flat on my back for 31 days!
 

That’s a very long time to be immobile, what did it take to recover your strength?  

When an old guy lays on his back for 31 days, he’ll lose the ability to do almost everything! When I came home all I could manage (with help!) was to slide into my wheelchair. Even that was hard. My second day at home I started PT with my in-home therapist, Allie Kemp and the rest of her team; they helped me rehab for the next eight months! I went from couldn’t move my legs, to a 4-wheel walker, to a 2-wheel walker, to a cane, to nothing!  

With Allie, I set two goals. In May we were going to the shore with friends, and my goal was to get in the swimming pool. In August, we were going back to the shore with family in a rental house that had two sets of stairs, 15 steps each. In August, I sent Allie a picture of me at the top of the steps.

How did your former students respond when they learned you were sick?  

Oh God, they were amazing. I tend to be sort of doofus, I don’t pay attention to things like that, but they were very sweet. I had this student, Tommy. He was not a science guy but for some reason, he just liked me. Great guy. He was friends with these two knuckleheads, they were a trio of sometimes foolishness. When it got out that I had leukemia, Tommy started a GoFundMe for me. I was touched and a little embarrassed. All kinds of students donated, sometimes for as little as five dollars. Between Tommy and his compadres, they brought me a check for over $6,000.  

I had kids who were still in school who began their classes by praying for me. I still have a hard time talking about it without being overcome by emotion. Even now I’ll still get messages from former students over email or Facebook, if I haven’t posted in a while, asking “Mr. Grove, how are you?” My response is always the same, “Thanks for asking, I’m great!”

Has being sick changed the way you think about science or spirituality?

I’ve always been interested in how things are interrelated. And I know just enough to be annoying. I’m always curious, always asking “What’s this? What’s that?” I want to understand how things work.  

About spirituality, I have this best buddy, Curtis Hansen. We used to teach together. And we’d go on spring breaks together, we called these “Bob & Curtis’ Excellent Educational Adventures.”  At one point, Curt told me, “You know He’s not done with you yet. He has a plan.” I don't know if I quite believe that, but I know I’ve been very blessed.  

I landed in AML at just the right time to participate in a trial. Dr. Wall discovered this drug to turn my blood type around. I have a hard time thinking God has a plan for me… but I’m much more patient and empathetic since I went through this.  

Most of all, I would like people to know that this disease is manageable. You never know what you’re going to get in life, like Forrest Gump’s box of chocolates. But you just have to hang in there, not let it overwhelm you, not look too far ahead.

Right now, I’m looking to July, when we’re going to the beach, where I’ll walk on the sand. I don’t look back too much because sometimes I miss the old me. But I do look forward, with Linda. My wife is fabulous. She helps me do it one day at a time.  

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.    

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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.