A Lake Mills woman is on a mission of continued remission, and filled with an attitude of gratitude, she is finding ways to give back to others. Her quest has taken her to many streets in Wisconsin, and she’ll soon be soaring the skies as Ms. Nelson, as she goes to Washington.
Valentine’s week wasn’t so sweet for Katherine Nelson in 2011, when she found a lump under her rib cage on Feb. 15.
“It didn’t hurt,” she explained. “I thought maybe it was an actual stomach muscle.”
An avid runner and sports enthusiast, Nelson attributed the fact that she felt like she was “starting to drag” to simply getting older.
She described what happened when she contacted her physician, Dr. Sara Barnes, D.O. regarding the lump.
“The odd thing is, they got me in (to see the doctor) that same day,” she explained.
The doctor told her that due to the location of the lump, it could just be an infection in her spleen, but she needed to run some blood tests.
The next morning, at about 7:30 a.m., after Nelson swam about a mile at swim class, she got a call from Dr. Barnes.
Barnes said, “‘I need you to get in today,’” Nelson said. “’Can you come in at 9?’”
When she told the doctor she had a hair appointment at that time, she asked if Nelson could get to the office in 10 minutes.
“She literally sat me down, looked at me and said, ‘You have leukemia,’” said Nelson.
After breaking into tears with shock of the news, she inquired of her doctor, “What do we do now?”
“‘Try to live your days normally,’ she told me. ‘Go to your hair appointment.’ So I went and had my hair done,” Nelson detailed.
A few hours later, she was heading up to UW Hospital in Madison to see an oncologist, Dr. Rachel J. Cook, M.D.
“They did a bone marrow biopsy that day, which was incredibly painful, and told me I was either Phase 1 or Phase 2 (of three phases),” she stated.
Within a matter of hours, Nelson went from training for a triathlon to being a cancer patient. Less than two days later, she learned she had Phase 1 Chronic Myelogenous Leukemia (CML), which involves the overproduction of immature white blood cells and the underproduction of red blood cells.
“For the next four months, I was pretty ill,” said Nelson, referring to the intense oral chemotherapy the doctor quickly started her on. She found herself spending her days sitting in a lounge chair and working from home using her laptop computer.
Then in May, a single piece of postal mail arrived which proved pivotal on her journey to hope, strength, and recovery. It was a postcard from Team in Training about a 100-mile bike event. When she received it, two thoughts entered her mind, the first being, how do I turn this (cancer) into a positive thing?
Secondly, Nelson thought about the fact people don’t know how to handle you when you’re diagnosed with cancer.
Close friends provided comfort, but she determined that she needed to find a community where she was with like people, people that had been touched by leukemia before.
Nelson decided to go back to what she called her roots, her love of athletics, and seek out other people in her situation.
She attended Team in Training meetings, and for the first time, publically stated in front of a group of near strangers that she had cancer, leukemia.
There she met Art, who became her coach, and Dan, her second coach, two individuals she refers to as amazing people. She shared how Art has been riding in the event for more than 10 years in remembrance of his friend that died of leukemia.
Nelson, who never had been a cyclist, said one of the driving factors in wanting to do the ride was she wanted to get to know Art, Dan, and the others she met.
“Immediately, I knew they were all kind souls,” she remarked, adding she also figured bike riding would be kinder to her body than the striking force of running.
At that point, however, she had not worked out for months, and on the first ride with the group, she was dismayed to be in the back of the pack.
Nelson fought back tears and wondered whether she really could undertake the training, much less accomplish the final ride.
Art eased her into the biking and motivated her in a very kind way, she said, and soon she switched to thinking that perhaps she could do it after-all.
“Every week, I got better and better,” she said, reflecting on the weekly rides and how she grew stronger by putting the pedal to the metal.
“Everyone lost a friend, a child, a mother, something. We were a community of people that understood what leukemia could do,” she said. “I was the only person in that group with leukemia.”
The Team Approach
Indeed, it’s not all that common that someone who is currently undergoing treatment for leukemia bikes in the event.
Nelson attributes being somewhat athletic before cancer, and this miracle drug Gleevec that attacks the cancer at the DNA level and stops the cycle of cancer cell production, to enabling her to be on the team.
Training for the event took place from June through September, when folks biked on their own during the week, and gradually built up mileage-wise on the weekends, when eight to 12 people ranging from 28 to 50 years old rode together.
Nelson admitted that as a runner, she assumed biking would be considerably easier than it proved to be.
She’s firmly convinced pedaling and the comaraderie kept her from taking on a negative outlook and approach.
“I really believe that Team-in-Training kept me positive through the whole experience,” she said.
Choosing to participate in the biking event also served as her way of letting people know she had leukemia.
“It’s a lot of work letting people know (you have cancer),” she said. “I thought it was a positive way to tell them … people never know what to do for you when they find out you’ve got cancer. I think it was their way of letting me know they were thinking of me,” said Nelson, who raised $10,000 that fall for the Leukemia Lymphoma Society through pledges.
When the Leukemia and Lymphoma Society (LLS) asked her to speak at the Door County event, which also attracts folks from the Madison, Milwaukee, and Green Bay, she gladly heeded the call.
“I spoke to about 100 people,” she said. “It was a pretty powerful moment, to think that only eight months after being diagnosed, I crossed the finish line and did 100 miles.”
It’s a Miracle
Nelson, whose kids were 14 and 10 years old when she was diagnosed, pondered on how things would have been different had Gleevec not been discovered 13 years ago.
“Sarah would never have been born, and Brian would’ve been three, because people with leukemia didn’t survive. They had a high death rate,” she said.
Gleevec is a whole different way of treating cancer, she stressed, and it was LLS that funded the study.
“It could easily never have been done, because they needed the funding — a drug that ended up saving my life,” she said, and which has since also been used as part of the therapy for breast cancer.
After the Door County 2011 ride, however, her health was sort of coasting along.
“My cancer kind of sat there,” she detailed. “It wasn’t getting worse, but it wasn’t better.”
The danger this situation poses is that the cancer can mutate to an incurable form.
At Christmas time, her doctor began talking about trying a new therapy, but Nelson was stubborn and resisted, as she was training for a running event.
In May 2012 after she did the half-marathon fundraiser in Green Bay, she started on the next generation of Gleevec, which is Sprycel.
Despite the targeted medication, Nelson, who at that time was going through a divorce and financial issues, was still not in remission.
“How it usually works, I should have been in remission in June 2012, “ she stated. “The therapy, if it works perfectly, it’s usually about 18 months.”
Dr. Cook sat her down in Oct. 2012 and told her she needed to reduce her stress level, as it was likely that the high stress was weakening her immune system.
As the major wage earner and insurance carrier for the family, she had continued working while undergoing treatment.
At the advice of her physician, Nelson cut down her work hours to part-time, lightened up on volunteer commitments, and moderated her rigorous workout regimen.
The Philadelphia Story
March 22, 2013 is a day Katherine Nelson will never forget -the day the doctor informed her she was in remission.
She had a special test, which involves looking at millions of blood cells to see if they can detect the Philadelphia Chromosome.
When a person has CML, the Philadelphia Chromosome causes white blood cells to overproduce. “When they can’t see it (the chromosome) at all, that’s when you’re in remission,” she explained. “But CML is not curable, so I have to stay on the (once-daily) drug for the rest of my life, until there is a cure.”
CML is an environmental cancer, and while they don’t know for sure what causes it, they do know radiation and pesticides can be key factors. The first person to get cancer in her family, Nelson stressed that cancer doesn’t discriminate and that she ate right and it worked out.
Riding Into Remission
To date, Nelson has already raised $13,000 to help people with blood cancer, and she’s on a roll.
“Because I’m incredibly grateful for being here, and for the Leukemia and Lymphoma Society for doing this incredible research, I’m doing the Scenic Shore 150 in July. It’s a two-day ride, 75-miles each day, which I’m in the middle of training for right now.”
She will once again share words of hope and inspiration as a speaker at the event, this time as a person that’s been riding on a long road to remission.
Nelson’s newest endeavor is doing advocacy work to help others facing cancer. What spurred her on is her own grueling experience of sitting at the hospital for six hours begging her insurance carrier to cover the cancer medication she needed.
They denied it, so she asked for five days worth of pills, which she ended up putting on a credit card, buying herself time to resolve the issue with the insurance company.
She’s fighting for oral chemotherapy to be considered the same as intravenous therapy, that the insurance companies would pay for it at the same rate.
Nelson recently met with Senator Scott Fitzgerald to talk about the issue. This month, she joins other advocates in our nation’s capitol to receive special training and work with lobbyists.
“I’m really honored,” she said about the opportunity to help people in our state through the Wisconsin Coalition for Cancer Treatment Access. Other states have already approved reimbursement for oral cancer drugs in an equal fashion to IV.
“I have to find ways to keep giving back, based on gratitude, because my life could’ve been taken away,” declared Nelson, sharing wisdom from one of her treasured friends. “’Time is not a reusable resource. You need to figure out how to spend your time correctly, because you can’t get it back.’”