Despite a rare cancer diagnosis and $12,000-a-month medication, this couple is staying positive
ALEXANDRIA, Minn. - When the oncologist entered the room on October 7, 2015, she posed one question to Seth Lardy.
"She goes, 'How are you still alive?'" Seth recalled. "And I said, 'I don't know, I feel fine.'"
This exchange came as a result of blood work during a routine physical. After seeing the doctor in early morning, Seth received a call at work stating his white blood cell count was 177,000, when the normal range should be 5,000 to 10,000. He was told to check in to the oncology department at the Douglas County Hospital, where his white blood cell count rose to 220,000.
It was there two days later that he received the official diagnosis of chronic myeloid leukemia (CML), a type of blood cancer that is very rare in people under age 60. Though Seth had been feeling fatigued, he chalked it up to being stressed and working often. It never crossed his mind that the reasoning could be more than that.
"Looking back, we could see (the fatigue), but at the time we thought he had been doing so much," said Ashley, Seth's wife. "His grandpa and a good friend had died and there was a lot of emotional stress, so we didn't think anything could be wrong."
Though released from the hospital soon after the diagnosis, Seth was immediately put on an oral form of chemotherapy called Gleevec. Because CML is a chronic form of cancer, it is not treated in the same manner as other cancers.
"CML is completely different (than other kinds)," Ashley said. "It won't go away unless the person has a bone marrow transplant."
Nearly two years after his diagnosis, Seth still takes Gleevec, the oral chemotherapy, as well as about 11 other daily medications.
"It (Gleevec) has maintained my white blood cell count and I will be on it indefinitely," he said. "It costs over $12,000 a month. But insurance knocks that down and through the company (that makes the medication) there is a copay assistance program, so we just hope and pray that continues."
In addition to the financial strain of managing a chronic cancer, all the medications also take a toll on Seth's body. Muscle and bone pain, muscle spasms, fatigue, fluid retention, depression, anxiety and possible infertility are just a few of the side effects he has faced.
"If you can't go to work you feel bad because yeah, you're sick, but you don't look sick," Seth explained. "Nobody can tell that you're sick. But you have the anxiety of feeling like 'I'm just sitting at home and should be working.' But you don't have the energy."
For now, Seth is considered to be responding to the medication because there is less than .1 percent of cancerous cells in his blood. Even so, Seth often has doctor appointments to be sure this remains the case.
"I go every month to do a blood work check and every four months we go and see the oncologist," Seth said. "If my body decides to reject this medication, there's two others out there that are similar but more expensive and have more side effects. Otherwise we are looking at a bone marrow transplant."
Finding common ground
Because this type of cancer is so rare in young adults, Seth and Ashley had struggled to find anyone who could relate to what they have gone through.
But a few months ago, Seth and Ashley came across something that sparked their interest.
"My mom's co-worker had seen something on Facebook from New Ulm Medical Center...about a young couple and he had CML," Ashley said. "I found his wife and sent her a message. I said, 'I know this is hard to talk about and if you don't want to talk that's fine, but we're in the same boat and so are our husbands.' She was just shocked."
The two couples decided to meet in person for dinner and hit it off immediately.
"Everything we talked about we were like, 'Yes,'" Seth said. "All of our side effects are the same. Some might be worse than the others, but ultimately they're all the same. It was like somebody finally relates and understands what we're going through and the anxiety that it causes."
Ashley says it was also helpful for her to talk to someone in her position as a caretaker.
"Talking about just feeling so helpless for your husband is something we've talked about," she said. "People can try to relate and that's awesome, but it's great knowing someone who is like, 'I know exactly what you're feeling but you can't put it into words.'"
The two couples plan to stay in touch and get together in the future.
For now, Ashley says she and Seth are just taking life one day at a time. Their most recent obstacle is the possibility of infertility as a result of the oral chemotherapy.
"We've just made the decision that if there is something we can do naturally to get pregnant, great," Ashley said. "If not, we will look into adoption."
The couple has made the choice to document this journey on their blog, www.cmlfromthegroundup.wordpress.com.
"I don't see the point in hiding it," she said. "It's our life and it's how we're going to manage it. If we can spread awareness or help people in our shoes, that's great."