Spotlight on Chris Meuleners, A Jack Story Presented by AARP

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Chris Meuleners: happiness, sadness, hope, despair, and places between.

Caring for his wife, Amanda, who has been fighting AML Leukemia for over two years. Like the flip of a coin, never knowing if it's heads or tails, and living like it landed on its side.

I met Chris on the last Saturday of November at Burning Brothers Brewery, deep in the heart of St. Paul’s Midway district. 

The main room was small and crowded in this late afternoon, so we moved to the back, where tables and chairs had been set up in the middle of massive beer kettles, tanks, hoses, and boilers.

I’d last seen Chris and Amanda at Jack’s Kick Ass Brunch Buffet in August.  Amanda was in a wheelchair, having just completed a particularly harsh round of chemotherapy.  Tracy and I had just dropped our kids off at Camp Angel for the day.
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Prior to that, we’d crossed paths at Jack’s Nintendo Switch Bootcamp in March at the Common Root Café in Minneapolis, where Kyle’s 11-year old son, Mick, had led a training session for us ‘old guys.’

They met in 2007 – she was looking for a swing dance partner on an internet site and he was a swing dancer.  

Although they didn’t dance then, they did 6 months later, when she was at a swing dancing locale where Chris was a regular.

“We danced and talked all night long,” Chris says.  “We hit it off and started dating shortly afterwards and have been together since.”

The two had a lot in common.  Both were swing dancers and danced as often as they could.  Amanda also taught swing dancing and Chris was on a team of swing dancers that was paid to perform at events in the Twin Cities.  Both were also into the theatre - Amanda was a theatre major in college and Chris was a fight stage choreographer for theater productions in college and for the Minnesota Shakespeare Company. 
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Their love of the theater was on full display at their 2015 wedding ceremony.  Amanda’s bridesmaids dressed as fairy princesses and the groomsmen as Renaissance nobility.

​“I told Amanda that I would dress in anything she wanted as long as I could have a sword fight during the ceremony,” Chris recalls. “Sure enough, when the priest asked if there were any objections, there was a challenger at hand. An intense dual that circled the audience ensued; after which, I secured my bride’s hand.”
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Chris Sword Fighting For His Bride

By late 2016 and early 2017, Amanda had been to the emergency room multiple times with stomach and heart issues only to be told that there wasn’t anything wrong with her. In the Spring of 2017, she went into the ER with stomach issues again but also had bruising all over her legs – this time, the doctors did bloodwork.

“We went home afterwards and got a call from the hospital with her lab results,” Chris begins.  “It was seven o’clock at night and they told us that we should go immediately to the University of Minnesota Hospital.  We could only say, ‘what’s going on?’  The person at the clinic just said that it was probably something to do with Leukemia.

“We went to the U Hospital immediately and spent the night in the ER.  We waited and waited and waited, and finally the doctor came in and says, ‘you have Leukemia.’  Amanda asked, ‘what are we going to do?’, ‘How long is this going to take?’, ‘How long will I be here?’  The doctor says, ‘we’re going to put you through hell,’ ‘you’re going to be here for months.’   

“It was nothing good.  He had a terrible bedside manner.  Then he told her, ‘you might die,’ ‘you’re going to have to deal with this treatment for a very, very long time,’ and ‘you might not survive.’
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“This diagnosis … it just hits you like a ton of bricks.  My initial reaction was to try to find a solution for it.  Of course, there wasn’t one.”

Amanda was diagnosed with Acute Myeloid Leukemia in July of 2017 and spent the next month and a half at the University of Minnesota Hospital, where she had multiple rounds of chemotherapy to treat the Leukemia. 

“I was sleeping on the floor there every night until they brought a cot in for me,” Chris says.

“She started with a round of chemotherapy that wiped out all of her blood cells in her bone marrow.  Then we waited for 21 days for the blood cells to start coming back,” he continues. 

After her bone marrow recovered, Amanda was discharged from the University of Minnesota Hospital and doctors told her that she was cancer free.  Soon afterwards, however, she was given 3 more rounds of consolidation chemotherapy in October, November, and December of 2017. 

“They wanted to hit it again - to make sure that they had gotten it all,” Chris says.
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“She was in remission going into the new year; then she relapsed in the Spring of 2018.  She was having a hard time breathing and walking and moving around.  There was a lot of bruising on her legs, which we’d seen when she was diagnosed.  It was the Leukemia breaking things down.

“We went back to the University of Minnesota Hospital for a more intense chemo, which was pretty rough.  She also had to have some surgeries in the summer because she had infections and they had to cut the infections from her body.”

In September of 2018, Amanda went to the Mayo Clinic for an allogeneic stem cell transplant.  Her sister donated her stem cells for the transplant because she was a 100% match for Amanda.  Chris and Amanda lived in Rochester for 100 days during the months of September, October, November and some of the month of December in 2018. 

“She ended up staying in the hospital for 21 days after the stem cell transplant because she had complications with her heart just after the transplant.  She potentially had a heart attack from some of the chemo that she had during the transplant.  She was in and out of the hospital for the rest of the time we were at Mayo.  We stayed in an apartment that was donated by the MedCity Foundation, which offers it to patients of blood cancers who are staying in Rochester. 

“We came home just before the holidays and things were good for a while,” Chris continues. 
“Then around March or April of this year, she started getting tumors on her face and a lump on her chest.”

After several biopsies, doctors determined that Amanda had chloromas in her face, chest, and spine.  Chloromas are clusters of Leukemia cells that had moved away from the new stems cells from the transplant and were now ‘hiding’ in her soft tissues.  In April, she began radiation on her chest, face, and spine to kill the chloromas. 

“Radiation wasn’t a fix – it was just a treatment for getting rid of the things that were causing her pain,” Chris says. 

In July of this year, they went back to the University of Minnesota Hospital and were told that Amanda needed a new form of chemotherapy, because the previous treatments hadn’t killed the Leukemia cells that remained in her body. 

“They recommended a new, very intense form of chemo.  She was in the hospital for almost 2 months. The treatment worked on her cancer, but it caused infections all over her body.  Doctors weren’t sure what was going on.  She was on tons of antibiotics, antifungals, and antivirals for everything.  

“When we finally got out of the U of M hospital, we went back to the doctor and asked her, ‘what next?’  She told us that she wasn’t confident that all the cancer had been eliminated and was recommending even more intense chemotherapy. 

“We haven’t done that yet.  We decided to put it on hold for the time being.
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“Amanda had been through hell.  She was in a wheelchair by the end of this chemo.  She weighed 97 pounds when her normal weight was 130-140 pounds.  She couldn’t take it anymore.  She needed a break!”         

With hope in short supply, a broken body, they look to alternative medicine.

In September of 2019, Chris and Amanda went to a holistic medicine retreat in San Diego, hoping to find something that modern medicine hadn’t yet given Amanda – a longer term, less destructive treatment for her cancer.

“The prognosis we got from the doctors after her last treatment was terrifying,” Chris says, noting the dire condition Amanda was in at the time. 

“I was done fighting to back the doctors up.  If she wanted to go on the retreat, I was going to fight for her to go.  We packed things up and made sure as many of our affairs were in order as possible, and we bought one-way tickets to San Diego for the retreat.

“We went to Optimum Health Institute in San Diego,” Chris says.  “It focuses on clean living and eating and some meditation.  Positivity goes into all the treatments.

“We were moving from eating high, fatty stuff to eating plants.  We were moving to eating cleaner stuff than we were used to. 

“During many of the early days at the retreat, she felt lightheaded and couldn’t walk around because her blood pressure was close to nothing.  Every week we were there, though, Amanda got stronger, she had more energy, she had more mental focus – more clarity – and she was talking more.  It was fantastic!  She healed up in more ways than one.
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“When we came home from the retreat, she had a bone marrow biopsy and a pet scan and they didn’t find any cancer activity in her bone marrow,” Chris says.  “There was minimal activity where the clomoras were.  They are smaller than they were, and the tumors have reduced.  I’m not saying that they’re all gone and that she’s in remission,” Chris continues.  “But she’s had a fantastic transformation!”

Waiting for the call. 

“We’re in maintenance now, and we’re just kind of waiting for it to come back,” Chris says.  “And after all the treatments she’s been through, her anxiety is sky high.  It really kicks in when you don’t know what’s going to happen next.  Last night,” he continues, “she had a nightmare and imagined that she got a call from the Mayo doctor saying that the cancer was back and that there wasn’t anything they could do.  We just don’t know when those type of calls are going to come in.
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“When you don’t know if you’re going to survive, you worry.  Even when the news is good, you worry that the next test will show the cancer has come back.  She just wants to have someone with her all the time because she worries - and I want people with her, too.”

Trying to take back control (but not really getting it).

Chris has read everything he could find on Amanda’s diagnosis.  “I was given the Comprehensive Networks Guide on Acute Myeloid Leukemia,” he says.  “This is what doctors use to treat their patients.  It’s pretty much the playbook that they use to cover every situation they know of. During those first months at the U Hospital, I put myself to sleep reading research articles on all the situations they know of and read about all the different treatment options she has.

“I needed the information,” Chris continues.  “I needed the knowledge.  I needed to feel like I had some sort of control, which I really didn’t!

“Now that I’ve read the whole book on everything modern medicine knows about her cancer, I know that she’s been through all the treatments doctors have.  Anything they come up with now, they’re making up. 
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“Now, we’re looking at clinical trials.”

A focus on what is really important – and what isn’t!

“I used to have a lot going on,” Chris says.  “I had a lot planned every week.  Amanda was involved in a lot of things as well.  We’ve gotten rid of all that.  We’ve backed away from most things that are ‘every week things.’  We live week to week.  I don’t really plan stuff over the weekend. 
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“This situation, dealing with cancer, reminds you what’s really important and what isn’t – the things you need and the things you could do without.  One thing that highlighted this to me happened in July, when Amanda was going through her cancer relapse and was in the hospital.  I was sleeping at my house and woke up with a flashlight in my face.  I didn’t know what was going on for a couple seconds; then it just clicked what was happening.  The guy with the flashlight grabbed my wallet and cell phone off my nightstand and ran out the door.  The police came and we walked through the entire house looking at open drawers and they asked me, ‘was there anything important in here?’  I looked at the drawers and realized that it was all junk.  None of it was important.  I didn’t care about any of it.  I saw those drawers that someone had just rifled through and realized that none of it really mattered.  And I started looking around the house and realized that none of this stuff is important to me. 

“It was an eye-opening experience. 

“This situation also redefines who you are and the relationships you have,” Chris continues.  “Many of the friends I had were still available, but when so much had changed in our lives, I can’t really expect them to change as well. 

“It’s interesting to find out who’s always there for you, who kind of distances themselves, and who comes out of the woodwork. 

“There have been so many people who reached out to me from high school or college – just individuals I had very little contact with before, and now they’re texting me all the time, asking me how I’m doing.  And they want to know what’s happening and they want to be there to help.  It’s been fantastic!

“I’ve never turned down any support that has reached out to us, either,” he continues.  “In the early days, it was tough because things were nearly impossible, and we really didn’t know what was happening and what kind of resources were available.  But we have a very supportive family, who takes turns staying with Amanda.  Work has also been very supportive, too – I’m able to work remote on Mondays and Fridays and was able to work remote the entire time I was down at Mayo for the transplant. 
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“I appreciate it so much when 1 person out of 5 people who asks how Amanda is doing also asks about me – how am I doing.  Sometimes, I just respond with a canned response only to find that the person really wants to know how I’m doing. 

“And I’ve started to be more cognizant of how I’m doing.  I may not have as many opportunities to be social now, but I want to be in the best shape possible now so that if the situation comes up, and if I need to care for Amanda, I’m fit enough to do it.  I need to have the energy to continue to encourage her to stay positive and resilient. 
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“I used to run 5 or 6 miles and I could barely do it.  After the retreat, I went out for a run and did 8 ½ miles one day.  Then some of the people from the running meet-up said they were going to do a marathon in 3 weeks. I said, ‘I’m going to do it too.’  I always wanted to do one.  Then I did a 13-mile run and 2 weeks later, I ran a marathon.  Now, I’m considering a second marathon in Orlando with the Leukemia and Lymphoma Society.  Running is a great outlet for my stress and my own anxiety.”

Living life on the roller coaster of cancer treatments. 
Holding your breath with every flip of a coin - every treatment result. 
Staring fate right back.

“It’s a roller coaster,” Chris says.  “Because when things are rough, you give up absolutely everything.  You put everything aside.  There’s no option – you give up everything to get through it.  We’re going to get through this!  The rough part of the roller coaster is that when things start getting better and they start to look good – health is good – then you, as the caregiver, want to do things, perhaps selfishly.  You want to be able to go out and do things – things you couldn’t do when things were bad.”

Chris continues, “You want to get back to your old hobbies, your old routines, and do some of your own things, but you never know, relapse after relapse, how long it will last. 
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“I don’t think there is a new normal for us.  I don’t foresee a new normal.  I always want to stay positive, but I know that there are two sides to it.  It’s like you’re flipping a coin, and you’re always just wondering which side will come up. 

“As much as I’m wondering if it’s going to be heads or tails, bad or good, I’m playing like it landed on its side.  Our lives will always be on the side.

“We’re never going to be comfortable, even if the doctors say she’s disease-free.  We’ve seen it too many times, and each time her cancer has come back.  We don’t talk about stuff more than a month or two in advance. 

“I’ll always be worrying, and I don’t think that will end.  We’ll never have the comfort of a cure, and we’ll always be living knowing that.
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“That worry is always going to be in the back of our minds.”

Chris and Amanda at her sister’s wedding in the summer of 2019.  Her sister held a small ceremony at the hospital when Amanda was going through her last round of chemotherapy

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By: Mike McGarry

Mike McGarry is a caregiver for his wife, Tracy, who has multiple myeloma. ​Mike and Tracy have 2 boys, Joseph, 13, and Jacob, 12. 

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This Jack Story was brought to you by:​​

​Visit AARP.org/caregiving for family caregiver information and resources.
Most people think of family caregivers as women taking care of their aging parents or children. What many don’t know is that 16 million family caregivers in this country are men. AARP is on a mission to break the stereotypes and ensure that all family caregivers, including men, get meaningful support. Men, often due to societal perceptions, avoid talking about their caregiving situation and don’t feel comfortable talking about the emotional and economic challenges of caregiving. However, caregiving is tougher than tough and seeking help is not a sign of weakness but a sign of strength.

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Catch up on any of the other Jack Stories you may have missed:

• Aaron Hill: Talking and Giving Care - 11/17/19
• Tony Peterson: Between Seasons - 12/6/19