“My eyes are drying out and this light is brighter than I thought it was,” he says. He wears a rather colorful cowboy scarf, or wild rag, that’s pinned together neatly in the front.
He decides to turn off the lights — the gray light outside is less harsh.
“Better,” he says as he takes off his sunglasses. Later, after speaking for a while, he puts the sunglasses back on. Even the gray light becomes too much for his eyes.
…
Who is Trey Allen?
“I’m born and raised in the Texas Panhandle. Got married. At the time I was just living hand to mouth. I was riding bulls and colts, breaking young horses for pay, basically cowboyin’."
However his time on that ranch was limited. He spent three years there before his wife took a job in Wamego, Kansas, and the family moved with her. Trey found a job in nearby Geary County managing a ranch owned by Rod Moyer. He loved it so much that when his wife decided to move yet again for a new job, Trey didn’t go with her. They’ve been divorced ever since.
He still has the same job on Moyer’s ranch, and he often says how grateful he is to have a boss who let him keep his job while fighting cancer.
…
Trey’s girlfriend, Janice Hannagan, urged him to see a doctor a little more than two years ago.
He tells this part of the story as he did previous chapters of his life: with a certain level of resoluteness in his voice. This makes the moments when he’s unable to control his emotions more difficult.
“My red blood cell count was 46 percent of normal, and my white blood cell count was just going haywire,” he says.
His doctor told Trey that they needed to perform a bone marrow biopsy — drill a hole in his hip and pull marrow out for testing. Leukemia, they told him, was what they were looking for. The next day he was released from the hospital. A week later, the results came back. Trey’s doctor, Dr. Travis Koeneke, a hematologist at the Cancer Center of Kansas, scheduled a visit in his office.
“His office is in a complex of several medical offices, and it’s kind of confusing,” Trey says. “I looked at pretty much every door in the building until I got to the last one that says ‘Cancer Center of Kansas.’ That was the first time I thought I might have an affliction of some sort.”
In the office, Dr. Koeneke told Trey that he didn’t have leukemia but multiple myeloma, a type of cancer that forms in the plasma cells in bone marrow. These cells help the body fight infection.
Trey’s emotions overcome him as he retells this moment. He apologizes, and it’s unclear if he does so out of embarrassment or routine. How many people has he apologized to?
“A lot of people say, ‘Why me?’ Mine was, ‘Why not me?’” He pauses and looks out the window. “The reason being was my kids, my stepkids, the neighbor’s kids — I figure if somebody’s gotta have something it might as well be me.”
It’s difficult for him to get out those words. His lip quivers but he wills himself to refrain from crying.
What went through his mind in that office after he’d just learned he had cancer?
“Nothing. Numbness. You hear the term cancer and everybody equates it with a death sentence. I don’t know why that is, but I guess that’s how we’ve been accustomed to deal with it. So there was just about an hour’s worth of just numbness. Now I’m trying to think how best to describe that numbness but numbness is the only thing that comes to mind.”
His first task, however, was to tell three very important people about the diagnosis.
“I wanted my daughters to know first,” he says.
So he went to Edmond, Okla., to see them.
“I got a motel room for the weekend, like we always did. That evening when my oldest daughter got off work, I basically sat down with the three of them. One of them has a notepad computer deal, and I had them punch in this multiple myeloma. This is where I was so proud of them. Their response was, ‘What are you doing here? Why don’t you have your ass back home to get chemo started?’"
“It was pretty much like any other day,” says Trey's daughter Lara, a sophomore in high school. “He gave us info about it first, that way we didn’t feel overwhelmed about it, and he’s kept a positive attitude since then.”
After Trey told his daughters, he started chemotherapy. A few months later, in the summer of 2013, he had an autologous bone marrow transplant: his cells were taken out of his marrow, he was flushed with a high dosage of chemotherapy, and his cells were returned to his body with the hope that the cancer would be gone.
“It was hard trying to carry on with life, work, and school,” says his oldest daughter Shandee. “I tried to talk to him every day, tried to keep updated. Nothing really sank in about all of this until his first transplant up here in Kansas City. I understood him having to take chemo up to that point, but nothing sank in until I saw him sick.”
After spending the majority of his time at home recovering, the results of the first transplant came back in September 2013.
“The long and short of it was it did not work,” Trey says. “At that point I went back on a chemo regimen that I’d been on in the spring.”
This past April his doctors recommended another bone marrow transplant, this time using donor cells rather than his own.
“My other option was to live on chemo,” he says. “And each drug at some point would quit working, so they actually wanted me to start the transplant in May or June.”
But Trey decided to postpone his second transplant until the fall, choosing instead to survive on chemo so as to continue working on Moyer's ranch.
“May to September is our busiest time of year,” he says. “We look after 3,000 head of cattle, manage our own hay production, do fencing projects when the weather’s nice. There was basically no time that I could schedule something that extensive.”
So he postponed the transplant to work during the busiest months in one of the grittiest jobs. While on chemo.
When Trey’s mother, Tana, speaks about her son, she comments on his resilience.
“When all of this first began, he’d had a talk with himself,” Tana says, “and he said he refused to feel sick. He’d had massive doses of chemo and wasn’t feeling well at all, mind you, and he says, ‘I’m not sick but I am a little queasy.’”
“I had guys tell me, ‘you must be tough,’” Trey says. “I guess there’s a mental toughness involved, but by the same token, you know, I was hired on to do a job for a man, so regardless of my ailments, that job comes first. As long as I wasn’t compromising my health long-term, I wanted to get my job done.”
Trey says that if not for his wages made on the ranch, he wouldn’t know how he’d be paying his bills.
“I’m basically payin’ to stay alive, not that it’s not worth it, but it’s like, damn. You pay your bills that you have to pay and everything else goes to collections. I’ve been able to get out of some of the little things, but I have these great big bills, and I look at it and say, ‘Can I file bankruptcy and still pay some stuff?’ I can’t walk away from everything, but how much do I try to pay? Long story short, pride won’t let me walk away without paying, but common sense says, ‘What the hell you gonna do, fella?’ ”
“The one thing that scares me the most,” Trey continues, “is if something happens to me . . . that debt I’m assuming will go to my daughters.”
…
After his second transplant, which he underwent in September, he spent 32 days in the hospital with graft-versus-host disease, or GVH. Trey explains that the disease occurs when donated bone marrow stem cells resist their new body. However, it isn’t entirely negative when it happens.
“For the doctors, it’s a key indicator that the donor cells are going in and cleaning house and getting rid of the stuff they don’t like,” he says, “and the doctors monitor to see if the donor cells don’t get too aggressive. I was on an IV feed tube for 19 days. When the highlight of your day is chewing a Tums in the morning and the evening for a little nourishment . . . ”
He trails off. Later he jokingly pulls out his bottle of Tums to offer me one.
“My dad said I looked like a convict out on the yard trading cigarettes just to get another Tums,” he says. “If I did break down and eat a Twizzler, when I had a bowel movement it was all there. I couldn’t get away with nothing.
But since his hospital stay, Trey has recovered enough to be able to eat solid foods. Not nearly as much as is normal for him, but enough to make him almost giddy when he tells about the salad and drop of dressing he ate the previous night.
After his 32-day stay in the hospital with graft-versus-host disease, Trey went to a nearby residency for cancer patients. The Kansas City Hope Lodge is funded by donations and run by the American Cancer Society, and Trey and other cancer patients getting treatment at nearby hospitals can stay for free. The free lodging affords Trey at least a small sense of security while he fights multiple myeloma. He’s said that without the lodge, he wouldn’t know where to stay because he can't afford a hotel.
“It’s a place where he can make a home the best that he can,” says Shandee, “which means a lot to anyone not staying at home.”
During the Thanksgiving holiday, Shandee and her two sisters traveled to Kansas City to spend time with their father at the Hope Lodge.
“He’s been doing good so far so I think it will be good,” says Tera, 13. “He’s just weaker now. I hope that next time we see him he’ll be better. It kind of sucks cause a dad is supposed to be one of the strongest people in the family. Just seeing him have trouble taking off his shirt and opening a bottle of pills — it’s kind of suckey.”
“It’s strange first of all,” says Lara, “seeing him go from what we’re used to seeing him like, which is strong, doing everything, to needing help with everyday things — that’s the strange part. But he’s still very independent, and that’s what helps us and him.”
“My Grandmama and Papa Dee, they just stepped in,” says Shandee, referring to Trey's parents. “You’re sacrificing as a caretaker just as much as the patient.”
About a week after Thanksgiving, Trey and his mother take a trip to the Bloch Cancer Care Pavilion for one of his many appointments. His mother’s name is Tana, pronounced like the end of Montana, she tells me.
When he arrives, Trey walks up to a high-tech looking scale and starts pushing buttons.
“One fifty-six,” he says to Tana after stepping off. “That’s with all these clothes on. I wouldn’t want to get up there like wrestlers do, in nothing but underwear. ... I’ve lost fifty-some pounds.”
Trey is shown into a room. A nurse comes in wearing purple gloves, a mask over her nose and mouth, and a thin yellow disposable cover over her scrubs. She checks Trey’s blood pressure, temperature, and heart rate. Later, five people enter the room, all wearing the same protective equipment as the first nurse. Among the five are two doctors, two nurses, and a medical student.
Only one, one of the doctors and the only man among them, speaks to Trey.
He looks at the bumps on Trey’s nose, probably caused by using tissues. “I may need to give you something [for the bumps]. It’s a bad place to get infected. Try not to touch it. With all the medicine we’ve given, your immune system is very low.”
The doctors then discuss what Trey’s body needs. They discuss magnesium and platelets, among others, and then decide that the platelets can wait until Trey’s next visit.
The meeting lasts not more than ten minutes, but he'll spend the rest of the day in that room as his body gets replenished.
After the staff members leave, Trey pulls out his phone to listen to a voicemail.
“And life goes on,” Tana says.
…
Trey will know whether his second transplant was successful sometime in mid-February. Until then, he will spend many more long days at the cancer center with his mother, who spends nearly every waking moment with her son.
“You know, we eat, we visit, go down to lunch,” Tana says. “We always wished we could spend more times with our kids, and this is an opportunity. We get into deep conversations, we laugh at stupid things — it’s a blessing in disguise.
“When I first heard he was sick, you know, I’m crying, ‘What’s going to happen to him? What if he dies?’ You have to say, ‘Wait a minute,’ and wrap your head around that it will be okay no matter what happens. But it calls us to task to really believe in what we say sometimes. You know we tell people, ‘It will be okay,’ but do you really believe in that? It’s a whole process of . . . really looking at your beliefs. You have to come there in order to be supportive, otherwise you’ll be a basket case.
“For me, what works is . . . it’s just my beliefs that people don’t die. We’re energy. The physical bodies may die — I liken our bodies to a coat. When the coat is worn out, it loses its usefulness. We miss the coat, but we don’t mourn it, we celebrate all the joy it brought to us. We have the memories of the coat.”
Trey’s phone is still on his ear, but it seems that he’s listening to his mother more than the voicemail.
Tana continues, “I think Kierkegaard said, “Life can only be lived forward and understood backward. When you have tough times in your life, you think you’re not going to make it, but you look back and realize all the blessings that helped you make it in the past. You can be sad, or afraid, but nothing changes. You either live it happily, looking for all the good, or you can live it miserably.”
Multiple times Trey has echoed this sentiment. He’s revealed a positive outlook despite his trials.
“People say you only live once,” Trey says often, “but really you only die once. You live every day.”
…
After some time passes, Trey starts talking about the poetry that he writes — cowboy poetry. His enthusiasm for it is written in the lines of his face as he describes it.
He says that he’s been writing and reciting cowboy poetry for more than 20 years. He’s even earned some acclaim, winning the first Kansas Cowboy Poetry contest in 2011, judged by Kansas Supreme Court Chief Justice Lawton Nuss.
After winning that contest, Trey’s poem “What It Is” was quoted by Nuss in an article in the Washington Post.
“Why don’t you read some, Trey?” Tana says.
Trey pulls up “What It Is” on his iPad. He holds the screen close to his face as he peruses the poem, and then he looks up seriously — a performer about to begin. He recites the poem fluidly and with the emphasis in those just-right places, as only an author can. He never glances down at the screen; the words are fixed in his memory.
“ ‘What is this cowboy poetry?’
the lady asked of me.
‘It must be more than stories
Whether rhymed or free.’
‘What makes it so intriguing,
reels you in and gets you hooked,
it must be something simple.’
I jist give a sideways look.
‘You're right, ma'am, it's kinda simple
but it's complicated too,
but if you've got time to lend an ear
I'll share some thoughts with you.’
You see the written word is simple
But the complicated thing
Is understanding the life behind the words
So I'll tell you what I mean.
It's the greenin' of the grass in spring . . . ”
…
To donate plasma cells for people like Trey, go to bethematch.org. Follow this link to learn more about the Hope Lodge in Kansas City.
A version of this story appeared in the Stories of Hope section on Cancer.org.