Inspirational Stories

I traveled with my friends Karen and Beth to Death Valley in February 2020 for a cycling trip where, despite Beth’s fitness and the amount of cycling we’d done, she became short of breath on the steep climbs. She would stop and catch her breath, then continue cycling. This wasn’t normal behavior, but Beth shrugged it off.
“We all have good and bad days on the bicycle,” she said.
On our last day of cycling, we were planning another hilly route.
“You guys go ahead. I’m going to ride down here in the valley and skip the hills today.”
We tried to protest.
“We can ride down here and stick together,” said Karen.
“No! You two go do the ride you’ve planned. I will enjoy this flatter route and we’ll meet back at the room before dinner,” Beth countered.
Reluctantly, we agreed.
While cycling, Karen looked over at me, her brow wrinkled, her eyes filled with concern.
“I’m worried about Beth. She told me this had happened to her once before. It could be something serious.”
“It’s hard to imagine,” I said. “Beth’s always the one that wants to ride further, hike longer. She’s lean and vigorous and younger than us. Her hair isn’t even gray yet!”
But later that summer, when Beth and her husband Kent returned home from a rafting and camping trip, we heard Beth had another incident. Kent had been able to beat her up the hill on his mountain bike. Usually, Beth would leave Kent in the dust, but again, she couldn’t catch her breath.
I could imagine Beth thinking that the shortness of breath can’t be anything, since she’s always been active and never overweight. She ate well, didn’t over consume alcohol. But after these several incidents of breathlessness, Beth was concerned. She could no longer assume this was just a passing phase, something she could work through. A fog of worry descended. A doctor appointment was scheduled for early November after her birthday. Two long weeks. Kent and Beth kept themselves busy with upgrades to the house they’d recently moved into. Beth told me she tried not to think about all the possibilities that could have befallen her.
When her birthday celebrations faded, doctor’s visits and blood work ensued. Her activities were curtailed, yet Beth tried to be upbeat. During that time, she was the one who recommended we hike to Smith Rock.
Though it was early November, the central Oregon sun shone brightly as we descended the Smith Rock Canyon trail to the Crooked River.
“What does the doctor say about your blood work?” Karen asked, her low voice echoing the anxiety we all sensed.
Beth deflected the question. “Oh, nothing’s confirmed.” Her brow wrinkled, uneasiness reflected in her eyes. “But it’s not sounding good.”
Silence fell with a heavy thud. It’s not sounding good, what does that mean? I thought.
“Well, keep us informed, will you?” Karen said.
Beth nodded and put on her sunglasses to cover up the tears forming in her eyes.
The river water sparkled like precious gems in that afternoon sunlight.
“Such a gorgeous day,” Beth exclaimed.
We had headed back out of the canyon when Beth pulled off the trail halfway up the steep climb and bent over, propping her hands on her muscular thighs trying to catch her breath. Her straight black hair clung to her head as sweat streamed down her inflamed cheeks. Karen and I gathered around, scared, unsure why our active, strong friend was experiencing this breathlessness. In contrast to the sunny November day, I could smell a cloud of fear.
After several minutes, Beth finally caught her breath and we helped her up the rest of the incline to the car.
On the ride home, we avoided the obvious topic but our thoughts were riveted on the next doctor appointment and what Beth’s blood work would reveal. Beth wrapped her worry around her like a coverlet, keeping it close, not wanting to share it with friends. Not wanting to believe anything was wrong.
A text message came less than a week later.
“I’m sorry I can’t tell you this in person. I am just too emotional. I have Myelodysplastic Syndrome. I am going to need a bone marrow transplant.”
Myelodysplastic Syndrome is a bone marrow failure disorder. The bone marrow does not produce healthy blood cells or blood cells are produced, but do not mature.
Beth later told me how she felt after her diagnosis. “Suddenly, I was different. I felt different. People treated me differently. I was the one with cancer. It was becoming my identity.”
Talking with Kent on their front porch before a walk with Beth soon after we received her text, he told us that of the millions of possible donors, there is only one match. “But she is a perfect match,” he said.
“Wow, what does that mean for Beth?” I asked.
“If this donor passes muster with subsequent tests, remains healthy, and is willing, we are in good shape. We had hoped we’d have multiple potential donors, so there would be solid backups if need be,” said Kent.
With a transplant on the horizon, the dark cloud of uncertainty hung over our heads. Would this donor be willing to go through with the operation? What if the donor refused?
Marrow donors typically experience some pain, fatigue, and stiffness following the donation. They return to a normal routine within a few days and their marrow returns to normal levels within a few weeks. The non-profit Be The Match connects patients with a matching donor for life-saving blood transplants. They provide support, information, and resources to help navigate the transplant journey. They would communicate with Beth’s match but the donor would not know she was the only match. Beth’s only hope.
“I would be happy to do this for Beth if I were a match,” I said as Karen and I cycled along one day.
“Oh, me too,” Karen said. “But what about doing it for someone you don’t even know?”
“That’s a good question, Karen. What altruism it is to give the gift of life to a person you don’t know and may never know!”
Would I take that on? I thought.
Later, we read this post from Kent on CaringBridge, a free online site for sharing health updates with friends and family.
“We finally have a projected date for the procedure! After a final round of testing Beth will be admitted to OHSU [Oregon Health & Science University] in mid-May, with the transplant 4 days later. We are excited to have a schedule.” Kent continued: “We are scared to death of what lies ahead. We are anxious to get started. We are positive, petrified, fearful, confident, uneasy, worried, and certain this will all work out.”
In May, we received a photo of Beth smiling and holding her soon-to-be-injected new bone marrow, a small frozen cube. Looking at the photo, it was hard to believe such a small package could be our friend’s savior. Beth would receive that bone marrow the next day and start her healing process. .
In early June, Karen and I drove to Portland to visit Beth at her temporary home near the hospital. At this post-transplant stage, Beth was still in a weakened state and needed to be very careful about exposure to any viruses. She was required to stay close to OHSU. Both Karen and I had been fully vaccinated against COVID. We wore masks in preparation for our visit and while inside the house with Beth. Together we were able to take short walks around the park nearby. We cooked for her and spent hours talking. It was so good to see Beth again.
At the end of June, Kent shared this on CaringBridge:
“Beth’s primary transplant doctor is very pleased with Beth’s progress. The new cells have engrafted and are doing what they are supposed to do. She’s impressed that Beth has the energy to walk as much as she does, and really couldn't be happier with her recovery so far.”
Beth’s immune system was still compromised. She always wore a mask when going out. It would take time for old red blood cells to be completely replaced by new ones. The level of activity Beth could maintain at this stage was encouraging to everyone but Beth. Her many friends walked with her almost daily. We were thrilled with her progress! Her doctors continued to tell her she was doing fabulous. She wanted to do more, walk faster, climb hills again. Despite all Beth’s strengths, including her determination and willpower, her patience was being challenged.
On August 28, 2021, Beth reached the milestone 100-day mark. She and Kent were able to move back home to Bend. But a mild graft/host disease reaction left Beth feeling run down, and disappointed.
In October, Kent shared that Beth was doing well overall. “She’ll feel good for a week or two until her hemoglobin gets low, then she struggles and needs a transfusion of red cells. She isn't making many cells of her own yet, which is not unexpected at this point.”
In January 2022, Kent’s CaringBridge post read: “This new year Beth begins with a new blood type. At long last, 7 months post-transplant, Beth is making her own red cells! She still gets tired. The cells are “immature” so carrying less oxygen than they should, but her hemoglobin seems to jump a point or so every couple weeks. At this rate she will be in a normal range in a month or two.”
In late January, Beth and Kent went to Smith Rock and Beth made it up the hill without assistance. She rested a couple of times on the steep climb, but she was just eight months post-transplant. That was an epic day!
In early August, Beth shared on Caring Bridge: “Well, we haven’t meant to keep you hanging but we’re ready to close out our posts! We are one year and three months post-transplant, and feel like we are ready to move on to the next stage. Normalcy. Whatever that means! Thank you all for hanging with us. We’ve talked with our donor. She lives in Florida. Her process as a donor is pretty amazing! She was tested initially to see if she was a match for a five year old family friend, with no match result. Then 18 years later she received an email asking if she was still interested in donating. She did not hesitate. She was amazed to learn that she was my only match! We had a wonderful conversation and will stay in touch. Hopefully we can meet someday.”
Beth gave credit to her friends. She has thanked us many times for being there to support her. Through the waiting, the unknown, the sadness. Through the transplant, through the slow recovery. And as she regains her strength getting back to hiking, skiing, and cycling, we are with her still.
“Let’s go for a hike,” Beth suggested to Karen and me the other day. “I want something with hills.”
A knowing look passed between Karen and me. Our friend was back.