Lowry woman, a two-time cancer survivor, enjoying life again thanks to lung transplant
Denise and Gregg Stoen, of Lowry, Minn., first met as teenagers at Lakeside Ballroom in Glenwood. She was from Alexandria, and he lived on a farm near Lowry. The young couple fell in love and had a wedding date set in December 1981. But instead of planning for a wedding that year, she was undergoing tests and then treatments. Denise was diagnosed with stage 4 Hodgkin’s lymphoma. The disease had entered her bones. She was 18 years old. The wedding was delayed until the following summer, and Denise immediately started chemotherapy treatments.
The treatments were strong and were able to knock out the lymphoma, but because of the potency of the treatments, doctors told Denise she probably would not have children. That turned out to be inaccurate. Over the next decade, Denise and Gregg had four children — Alicia, Jackie, Nathan and Andrew — and they raised them on their family dairy farm near Lowry.
The next medical challenge arrived in 1991. Studies were showing that the chemicals used in the chemotherapy treatments that was used on the Hodgkin’s disease appeared to result in cancer forming in other parts of the body over time. Right on cue, Denise was diagnosed with mullerian tumors that were on the lining of her abdomen. The treatment she had is no longer being used on lymphoma patients.
“It resulted in six months of new treatments,” said Gregg. “She had tumors all over her abdomen. They did an exploratory surgery, taking everything out, put it on a table and cleaned them up, and then put them back inside her.”
As she was fighting through her second cancer diagnosis, Denise started noticing potential problems with her lungs. It is not known what caused it, but was likely from the treatments she had received over the years.
“It took a bunch of different kinds of chemo treatments, some experimental, for years, and they were all horrible,” said Denise. She said the treatments were not curing her, but just keeping her alive. “I was miserable for a few weeks after treatment, then I was OK for a week, and then I would get another treatment and go through it again.”
So in 1994, Denise made a big decision.
“I decided to just quit treatments,” said Denise. “I decided that quality of life was more important than quantity.” Although Denise had stopped medical treatments, she didn’t stop trying to get better. She turned to homeopathic options, including reflexology, massage, and a healthier diet. Denise learned a lot over these years, and some of these techniques helped.
She later learned that doctors were not optimistic on her chances after she stopped receiving treatment.
“I was 29, and years later, my doctor told me that they didn’t think I would see my 30th birthday,” she said. “They thought I had about four months. They didn’t tell me at the time, but that is what they thought.”
The treatments of prayer and homeopathic methods continued.
“An experienced doctor once told me, ‘The longer I have been in oncology, the longer I know that (cures) don’t always have to be scientific,’” she said. “And truly, had I known about some of the things I learned while doing the natural stuff while I was taking the treatments, I think the treatments would have gone better. I was trying a lot of things during this time, but everything I did was natural and healing.”
But, despite the odds, the cancer didn’t take Denise. The cancer just, sort of, went away.
“I still don’t know why God cured me,” she said. “He has a plan, I just don’t know what it is.”
But while parts of her life were stabilizing, others were failing.
“Breathing got harder, and as breathing got harder, I started using oxygen through the night so I could keep my body’s oxygen levels up,” she said. “By 1996, I was using oxygen both day and night.”
Four years later Denise first pursued her options of a lung transplant. Unfortunately, because of her history of cancer, she was denied.
“I was gradually getting worse,” she said.
The Stoens, already strong in their faith, leaned more on their faith as the days were getting harder and the options seemed to be getting fewer and fewer.
“I prayed for direction,” she said. “I just wanted Him to give me a path.”
Raising four kids, battling serious medical problems and running a farm made life difficult for the Stoens. But they just kept doing the best they could. And they had some help along the way.
“Our parents were here all the time,” said Denise. “We were blessed and fortunate to know that everything was taken care of if we had to be gone for medical appointments.”
And they also got a lot of help from their kids. Each of their children had regular responsibilities on the farm and each chipped in when they knew their parents needed it.
“I feel sorry for all the work they ended up doing when they were young,” said Denise, “but I will say, they all grew up to be very helpful and considerate adults.”
Keeping up with active teenagers was a challenge, but Denise did the best she could. After one of their sons advanced to the state wrestling tournament, she and Gregg remembered the planning involved to allow her to watch him compete in the Twin Cities. The trip involved several tanks of oxygen, and several backups, along with a map of medical facilities along the way just in case they needed them.
And the oxygen wasn’t the only thing keeping Denise going.
“I think I was on every prayer list,” she said. “I could feel all those prayers. Those prayers really helped our family with our faith.”
Gregg was by Denise’s side through every medical twist and turn, but for a while, he was the one who needed more help. In 2007, Gregg contracted Guillian-Barre Syndrome (GBS), also known as “French polio.”
“I wasn’t able to keep up, so I had to sell our dairy cows,” he said.
Friends and family pitched in to help the Stoens. One friend planted all their corn and another planted all their soybeans that year, and Gregg’s dad was there throughout. Eventually, Gregg was able to recover from GBS, but it had taken its toll.
As years went by the Stoens were blessed with grandchildren (they now have seven).
“When the grandkids would come over, they would always be able to find me,” she said. “They would just follow the 30-foot oxygen hose. I was never good at hide and seek. I was too easy to find.”
The oxygen tanks never left her side, but even with the tanks, each day was a struggle. About five years ago, everything came to a head.
“In March 2013, I ended up in trouble,” she said. “I couldn’t breathe. Gregg tried to get me to relax, but I couldn’t. We used the nebulizer but it still wasn’t helping.”
“We called 911, and the first responders were there quickly,” said Gregg.
Denise was transported to Glacial Ridge Hospital in Glenwood and was then transported by ambulance to St. Cloud the next morning when she stabilized. “It was a wild day,” she said. “There was too much carbon dioxide in my blood so it was poisoning me.”
The pulmonologist there told the Stoens that Denise needed to apply for a transplant.
“We told the doctor we had tried but were denied,” said Gregg. “He said to go in and see again.”
They filled out the proper forms and sent them in. They had week-long evaluation testing in November 2013, and on Jan. 6, 2014, she was notified that she was officially on the lung transplant list with LifeSource. LifeSource is a nonprofit organization that helps hospitals and donors connect.
“There is a scoring system the transplant team uses to score how severe your lung damage is and that determines where you end up on the list,” said Gregg.
“I was pretty excited to get on the list,” said Denise.
She knew that LifeSource would contact her if they had a lung available for donation, so she set her ring tone song to Oh, Happy Day if they called her number. Then it was just a waiting game.
“On Dec. 8, 2014, at 5:50 p.m., I was sitting in the Minnewaska Area High School auditorium watching my first grandbaby’s Christmas concert when my phone buzzed,” she said. It wasn’t the Oh Happy Day number, but it was from the Twin Cities.
“I was sitting next to my daughter, Jackie, and asked her if I should take the call with the concert about the start. She said, “Yes! The call is coming from Twin Cities area.’”
She answered. It was LifeSource.
“They said, ‘Hello, Denise. How would you like a late birthday present?’” she said. “My birthday was the day before. My knees started to shake a little. You can not prepare yourself for that call.”
It was a special phone call and made even more special where she received it.
“My whole family was there for the concert… kids, grandkids, parents,” she said.
The family celebration at the school was emotional… but it was short lived. Time was of the essence.
“We went home and packed,” said Gregg. “They give you a list of things you should have packed, and you do that, but it had been a while since we packed so we needed to go through it again.”
Although they were very exited, the Stoens also understood that there were no guarantees, and this could end up being a dry run if something went wrong with the donor’s lung in the hours ahead.
By 10 p.m. that night, they were at the University of Minnesota Health Transplant Center.
“When I got down there they took a lot of tubes of blood for testing and cross matching,” she said. “I didn’t sleep at all that night.”
“At 9:30 a.m. the next morning, I went into surgery,” she said. “The surgeon asked, ‘Are you nervous?’ I said, ‘Yes.’ She said, ‘Good! Otherwise I really would be.’” He learned later that this was our surgeon’s first solo long transplant surgery.
When Denise got out of surgery, her family was there to greet her. It didn’t take long to realize that this surgery was going to be a life changer.
“I didn’t know what to expect,” she said, “but I never thought it would feel like this! It was kind of unbelievable.”
The surgery took place on Dec. 9. By 10:30 a.m. on Dec. 10, Denise was out of bed and walking around. And within a few days, she was able to ditch the oxygen tanks and hoses.
“It was a strange feeling not having my hose with me. I had a 30-foot hose with me for a long time,” she said.
Denise stayed in the hospital for nine days and then stayed in housing near the hospital.
“God’s timing was perfect,” said Gregg. “Harvest was all wrapped up, and year-end bookwork was done. Because transplant patients and their caregiver need to live in the Cities for about three months, I was able to get back in time to haul grain and do the spring work.”
The timing was also crucial to Denise and her future.
“Before we got the call that I would get a transplant, I really didn’t think I would make it through that winter,” she said.
While in the Cities, Denise and Gregg attended regular support groups for transplant patients. The support groups were a very important part of the process, said the Stoens, who actually started going to them prior to their surgery.
“I received a left lung in the transplant,” she said, “and while staying in the housing after the surgery we figured out who my lung buddy was. The hospital can’t tell you who it is, but we started putting the pieces together and figured it out. So I got the left lung, and she got the right.”
Denise progressed well enough that she was able to come home in February, about a month ahead of schedule.
The transition to the new normal continued when they got home. All transplant patients are required to have a full-time caregiver in order to be considered for a transplant. Gregg continued in that role.
“That is why God gave me Gregg,” she smiled.
Denise, like all transplant patients, will take a series of medications every day to reduce the likelihood of rejection or infection.
“I was taking 28 pills a day, all at once,” she said, “Now I take way less than that. I have to keep a close eye on things, like breathing changes, my blood pressure and even acid reflux, which can cause complications.”
The immune system is also suppressed, so extra precautions are taken to stay healthy.
“The first month after I got home I was very careful,” she said. “I didn’t go out in public for a month, and then we were very careful. We would go to church, and I would sit in the back row. There are restrictions I have, too. I can’t clean fish. I can’t have a dog, cat or bird in the house, and I can’t be around dirt or mold.”
“Our bodies can fight off these things, but her body has a harder time,” said Gregg.
Despite the restrictions, the lung transplant has given Denise a new lease on life. And she has more freedom now than she has had since she was a teenager.
“The day after my transplant I made it a goal that I would walk the Magic Mile (at Glenwood Waterama in July) and I did it,” she said. “More than 50 people were there with me, all wearing T-shirts and supporting me. I even ran the last stretch. As I crossed the finish line I could see my mom bawling. It was a special day.”
Last year, she gave herself another big challenge.
“I have been able to do things I have never thought I would be able to do,” she said. “Last year, we went hiking at Glacial National Park in Montana. I didn’t have strength in my legs like I should, but I did pretty well.”
As big as these feats have become, the little ones have been just as special.
“She is able to do many more activities than she used to and is more active with the grandkids,” said Gregg. “In May 2014, the kids made May baskets and put them by our front door. If you catch someone putting a May basket by the door, you can try to give them a kiss. She was chasing after those grandkids all over the yard. She could never run with the kids before the surgery.”
The Stoens are enjoying their new, less complicated life. A few years ago, they had the opportunity to take over a family home located near Lake Minnewaska. They worked together on fixing up the 100+ year old home and are now renting out the home, which is fittingly called “Breathe Easy Cottage.”
Denise has regular checkups at the University of Minnesota. And she and Gregg continue to attend the support group when they are in the Cities for checkups.
“The support groups are very important to us,” she said. “Before my surgery, I went to one, and there was a gentleman there who had just been through a double lung transplant. I looked at him and saw how good he was doing, and thought, ‘I can do this!’”
After the surgery, Denise was on the other side. She got to spread hope to those worried about their pending transplant surgeries.
The transplant has brought much happiness to Denise and her family. She will never forget the feeling she had on Dec. 8, 2014, when LifeSource called to let her know that a lung was available. For the family of the person who donated the lung, Dec. 8, 2013, was undoubtedly a day of loss and sadness.
“I do not know the person who gave me their lung,” said Denise. “I would love to someday find out who it was. I would like the family to see the life that I got because of their loss.”
Denise wrote a letter to the family, which is sent to LifeSource. That letter will reach the family of the donor if the donor’s family agrees to receive it. Then they can decide whether or not they want to respond back to Denise through LifeSource.
“I wrote the letter and then rewrote it,” she said. “I sent it on the first-year anniversary of my transplant. I didn’t let anyone else read it. It was one of the hardest things I have ever done. I don’t know if I ever will meet that family, but I wanted them to know how it has changed my life.”
Denise has become a strong advocate for organ donations.
“I encourage everyone to be a donor,” she said. “It is not just the major organs either — it is the tissues, too. And there are more than 100 different things from the body that can be donated.”
How much did faith play in her recovery?
“Everything!” she said. “God is good.”
Denise said she has grown stronger in her faith even through the toughest of times and believes that if you keep the faith, good things will happen.
“You’re never alone,” she said, adding. “If God leads me to it, he’ll bring me through it.”
Denise said God has a reason for keeping her around. She just hasn’t figured out what that reason is just yet. But Gregg, who has been with her since day one, think he knows.
“I believe she’s here to give others hope and show them the importance of faith and prayer.”