Alan Christensen: On living life in fast forward.
I met Alan at his St. Paul home in mid-December.
He and Sara, his wife, had moved there in early 2018, 4 months before her first symptoms began and 5 months before she was diagnosed with Angiosarcoma cancer.
He showed me around and pointed out some of the recent improvements he’d made, including the sound studio he’d put in his basement – half the walls were painted with the colors of Jack’s Caregiver Coalition (red and tan) and the other half with the colors of Rein in Sarcoma (blue/purple with yellow).
“It will be a podcast studio with the option to run a webcast and Facebook-live type of material,” says Alan. “The hope is that the tight shots on people in the studio will look just like they would on TV.”
I’d met Alan at Jack’s events in the past. In November 2018, we drove excavators and other heavy equipment at The Extreme Sandbox in Hastings. Last March, he’d teamed up with Chris Meuleners at the Jack’s Switch Boot Camp and taken us all down.
More recently, in July, I’d seen him at Sara’s wake.
When we finally got around to setting up for the interview in the front room, Momma Connie, his mom, and a family friend, Stephanie Troup, came home. We chatted for a while, then decided to move the interview upstairs, in the front bedroom at the top of the steps, a room that had been Sara’s office while she was sick and where Alan had slept at times on a Murphy bed while he cared for her. It was next to Sara’s bedroom, where she had spent so much time during the last months of her life.
There were a lot of memories in these walls: good memories; dark, tragic memories. Memories that made Alan the man he is today.
Coming from different places, then finally together.
They’d known each other forever, having met in 2004 through a mutual friend, when they were both in their early 20s. “We hung in the same circles of friends but were fundamentally different people,” Alan says. “We butted heads. We were polar opposites. I just wanted her to go away when I saw her.”
Over the years, though, as they moved out of the ‘neighborhood,’ they got back in touch. “Through AOL Instant Messenger, we started talking,” Alan says. “Then I kind of reached out when my brother was getting married and I needed a date to the wedding. Somehow, we became friends online after we hated each other in real life. I had zero expectations of the date turning into a relationship. I just wanted to have someone who would be fun at the wedding.”
At the time of the wedding, Sara was in grad school 500 miles away from where the ceremony would be held. “She had a performance the night before the wedding and drove overnight to get to the hotel on the north side of Detroit. She arrived at 6:30 in the morning. I was in the wedding so was doing all sorts of different things to get ready for it,” Alan continues. “She’s going on no sleep, a huge drive the night before, just to hang out with a friend? At the time, I was pretty damn naïve. I don’t think you do that for someone who’s just a friend. I think something happened online and she said to herself, ‘Hey, this could be something.’
They kept in contact after the wedding and 9 months later were ‘officially together.’
“We just clicked that second time around,” Alan says.
“Something was different this time. I was working in DC at the time and heard on a radio show the question: ‘How do you know when you’re in a relationship?’ The answer: ‘When you have to ask someone what your plans are.’ It was kind of kindled at my brother’s wedding. Then we spent New Year’s Eve in the Twin Cities, going out and having fun. Five years later, to that date, we were married, on December 31, 2014. It was pretty nontraditional all the way around.
“The fact that we were fundamentally different people didn’t change, even after we were married,” Alan says. “Eventually, we would agree on things, but we took different paths to get there. It’s a challenging way to live life, but it’s also a way to build trust."
"Sara could literally do anything. She joined the political world recently, just out of the idea to do something really cool. They called her a data director. It wasn’t something that I expected she would do.”
Sara’s work with the DFL began as a volunteer on Jacob Frey’s Ward 3 City Council campaign and continued when she became an employee of the DFL and worked on the “Coordinated Campaign” before joining the 2016 Presidential Campaign for Bernie Sanders. After moving from Minneapolis to St. Paul, she continued her work locally with the DFL Disability Caucus, “My Young DFL,” and “CD5.”
Last summer, Alan accepted the DFL Rising Star Award for Sara, posthumously.
“She was a teacher by trade," Alan says. "She was very naturally a teacher, a facilitator, a helper of any kind. She was good at so many things. When I met her, she had worked in grocery stores her whole life then wanted to make a change. She had a teaching degree, but it was in music, and music teaching jobs were very hard to come by.
“As an educator, she found herself wanting to be more of a generalist. We had a friend in Baltimore who taught special needs students, and after we came home from visiting him, she announced she’s going to be a Special Ed assistant."
Sara worked as a Special Education Assistant in South Minneapolis, at Field Middle School, when she accepted a teaching position at Minneapolis North High School. The school district offered to grant her a waiver to become a teacher if she would work towards her Special Ed certification.
“She was working towards that certification at Minneapolis North High School when she got sick," says Alan.
“It was right after Spring Break in 2018, and she wasn’t feeling well. Then in April, she started feeling exhausted but kept working because she was new to the position. Finally, towards the end of the school year, the final days of the year, I felt a real urgency to have her checked out.
“I knew it was serious because she was almost choking through the cough. She was having back spasms and had pain in her ribs.”
The Christensen's went to the ER at Regions hospital and the ER doctors said they needed to go to Oncology to get more information on her condition.
“I didn’t even know what that word meant,” Alan says. “So, I asked what the hell they were saying, and they said she has cancer. I’ll never forget that… right there in the ER.
“It happened quickly. Then we were thrown into it!
"It was right at the end of May, the first of June. My birthday is on June 10th, and the thing that really kicked it all off, the biopsy, was on June 11th of 2018.”
The biopsy showed that Sara had Angiosarcoma, which is a rare sarcoma cancer that forms in blood vessels and the linings of blood-filled sites throughout the body.
“In a 2005 study of 1.3 million cancer diagnoses, sarcomas make up just 0.7% of these. Overall, angiosarcoma diagnoses make up between 1-2% of all sarcoma diagnoses. We were in the rare category for sure.
“I had heard stories of cancer survivors before, so immediately I’m thinking, ‘It’s time to beat cancer.’ It was almost a cliché, because I really didn’t know what we were up against.
“We knew early on that surgery was going to be the answer for Sara if she was ever going to be cancer free. Chemo was 20 weeks, and we probably spent 24 weeks in total trying to get our heads around it, trying to shrink the tumor through chemo.
“The chemo was treacherous, but we had a goal – to get clear for surgery.
“That’s what we were hoping for. And we did all the work, meaning the chemo and all the way up to the PET Scan, where they scan your body for any active tumors. In order to be cleared for surgery, the PET Scan has to show a non-metastatic state of the cancer.
“Unfortunately, the PET Scan showed that she was metastatic. That meant that there are now tumors in other areas of her body.
“We got that bad news on October 31 of 2018 - Halloween. They told us at Regions that we weren’t cleared for surgery, because even if they did remove her tumor, there were tumors in other places in her body. And that if they did surgery, there was such a high probability of Sara dying on the surgical table… they didn’t want to kill her on the table. The risk reward was upside down.
"We heard it in the afternoon. We knew it was terminal. It was a rough, rough experience. October 31, 2018, is a day that I’ll remember for a very long time. It is a day that changed my life forever.”
After hearing that Sara was metastatic, the Christensen’s knew that there was no surgical solution for her cancer.
“We entered that day hoping and praying and preparing for major surgery, the odds of which were not great of surviving. But we learned that the cancer had spread to her legs, and once you go metastatic, there’s no cut removals of tumors, so we had to continue treatment.”
The goal for the Christensen’s now was treatment that would hopefully control the growth of the cancer in Sara’s body and extend her life, making her as comfortable as possible with the time that she had left.
“The tumors were pushing on her bronchial tubes and were affecting her breathing. The chemo relieved some of that pressure by keeping the tumors from growing,” Alan says.
From the start, caring for Sara was Alan's sole concern. It took over his life.
And he did it alone, by himself.
His employer allowed him to work from home to care for Sara, but since they weren't from the Twin Cities, they didn't know many people who could help out, so, as Alan says, “I did it all myself.”
“I didn’t have anyone to bring me dinner – I’m from Michigan.
"We went home for Christmas last year and those I love most noticed the change in me: the growth, the burden. It happens incrementally, so if you’re not around the caregiver every day, it looks like it happened quickly, but it’s something that just builds up. It doesn’t happen overnight.
“By then, as a caregiver, I was used to the routine of it, and our routine didn’t change that much. We did 3 days of chemo in a row. It started Wednesday, Thursday, and Friday, and it moved to Tuesday, Wednesday, Thursday and then she could get fluids as an outpatient on Friday.
“She was able to go in as an outpatient instead of going to the ER because she was considered a ‘very sick person’ from the day that she was diagnosed. Even though she didn’t feel that way at first, the medications, the other things they were doing, and the cancer - they stole from her and they made her a very sick person.
“Every week, we knew that the toughest day was going to be Sunday, because it was 2 days out from Friday and one day out from Monday, when we could go into the hospital if something was wrong.
“Sunday was survival day. That’s all it was.”
Life becomes a sprint. Living life in fast forward.
“She was living her life in fast forward, trying to squeeze in as much possible, because we didn’t know what to expect.”
In February of 2019, Sara slipped in the shower and broke her minor leg bone.
“We knew right away that it was serious, so I called the ambulance.
With the broken leg and shock of falling, Sara developed a fear of falling - so she lost her willingness to take risks.
“Because she was scared of falling and had no stamina, I got a scooter, so she could move around safely.
“We have one bathroom upstairs, and when she would climb all these fricking stairs to go up to the bathroom, she’d be so tired that she’d stay up there, in her bedroom, for hours. She knew that if she went downstairs again, she wouldn’t have the energy to go back up.
“So, it was ‘chair lift’ time. I knew right then that I needed to get a chair lift for her. I’m only going to have this much time with her. It’s time to do it. So, literally, against her objection, I went on a Monday or Tuesday to a chairlift place in Eagan, telling them I want it installed as soon as possible. They installed it on Friday.
“She was worried about becoming like an old lady,” Alan continues. “That was her biggest fear, which was really strange because that’s exactly what was happening to her.
“As her cancer progressed and it got deeper into the spring, the doctors were honest with us about what we could do and what we could expect. They told us, ‘if you want to go up to Duluth to have a day, that’s OK, but don’t go to Chicago. This is your home base.’
“We knew on Memorial Day weekend that Sara wouldn’t be able to leave Minnesota again. She had on her bucket list that she wanted to see something on Broadway or off Broadway, so it was either New York or Chicago. She really wanted to see Wicked in New York. We never got there. I was putting some financial pieces in place so we could go, but when we asked Sara’s oncologist about going, we were told not to go very far from home.”
It was on a Monday, the day after Survival Day, just after the 4th of July of 2019, when Alan was taking Sara to Regions to get her blood and fluids checked, just as they’d done so many Mondays before.
This one seemed different, though.
“It’s routine – we go in on Monday to get the fluids checked. Sara wasn’t feeling the best that day and asked me if I’d get the cart out of the car and put it at the base of the steps for her, just to save her from any extra steps she’d have to take. I’m like, ‘Absolutely!’, ‘No problem!’ It took her a long time that morning to get from the couch to the base of the stairs, which is all of 30 feet.
“Something was different. When we got to the hospital, they told us that the calcium in her blood was so high that they were afraid that she was going to die of a heart attack - like in the next 24 hours if they couldn’t get it down.
“This was an end-of-life situation. When we were driving to Regions that day, we didn’t know she would never come back to the house.
“Within 4 days of leaving the house that morning, from Monday to Thursday, I would become 100% in charge of Sara, in a very real way.
“By Thursday, I’m doing all the work, making all the decisions, because it got to the point that she couldn’t make them. That scared the shit out of me! I was not good at that.
“Now I’ve declared myself in charge of my wife. Decisions are mine. She’s in so much pain. She’s been pumped full of fluids to get the calcium down from earlier in the week. By now, it’s day 5 since we’ve come in, probably Thursday or Friday, but she’s not on pain killers yet. She’s just jacked out of her world. You’re looking at a person who is literally fighting for her life. And she’s sitting there, worried about getting addicted to opioid painkillers, not knowing that she only has 10 days to live.
“She’d always fought against taking the pain medications, the opioids, because she was afraid of getting addicted. By Thursday, she no longer had a choice. She stopped saying ‘no’ to taking them.
“But she had to get there on her own. And she finally did. She knew that something had changed in a big way. She had a CT scan on Thursday or Friday, and it showed that the cancer had just exploded in her body. The cancer was just everywhere.
"Everything was worse, and she was advised that this was going to be the end of her fight, because there’s nothing more they could do.
"So, we entered hospice on Thursday night or Friday morning. I was looking for a place for her and I went with my mom and two different aunts.
“At that point, I’m 37 years old and I’m walking into a hospice facility with my mother for my wife. Society tells us that’s backwards. You would expect that Sara and I would walk in a place trying to find a place for my mom. It wasn’t lost on me how backwards that was.
“Then Regions told us that there was an opening at Our Lady of Peace in St. Paul. That was the best thing that ever happened to me in this entire experience,” Alan says. “Their ability to take Sara. It changed me forever. She lived 8 days in the hospice facility and then she died. There’s a lot of things I’ll forget in this life, but that’s not one of them.
“She surprised me there. She went from, ‘I want to go home, and I want to die in my bed,’ to, ‘I’m going to the hospice home and I’m going to die there.’ And I think she did it so I could stay in our house.”
“I wouldn’t wish this on my worst enemy!”
“I could never hate anybody enough to wish this type of cancer on them. I mean, we went in for a June 11, 2018, biopsy and my wife died on July 24, 2019. That’s a 13-month span of ‘holy shit!’
“She died before she was 37 years old. That’s [messed] up! I celebrated her 37th birthday without her. That’s [messed] up!
“The biggest defender of me in my life was now gone. That’s a really selfish way to look at it, I know."
“The outpouring of support after she died was amazing!" Alan continues.
“It was really the most genuine form of love that you can find. Sara died on Wednesday, July 24th, 2019, at about 10:30 at night and within 36 hours of me calling my closest friends, they were all here. I knew when I saw them, no matter what happened, that it was going to be OK.
"I had so much support that came into town: my parents were here, some of my aunts were here, my uncles were here, and there were so many other people that were here. I wasn’t by myself! This was a good thing!
“Now, I could get into my own element a little bit. I could be myself. I had to figure out how to be myself. I had to learn how to be by myself.
“Once my friends rolled into town, in some cases people I’d known for 20-25 years, things became a little bit easier for me, because there were other people around, there was more energy around. Stuff was going on.
“I hadn’t been this close to death before, and I knew that people were watching me, seeing how I would react to it. All these people who loved me, they were watching me, making sure that I was going to be OK.
“And I knew I would be.”
Stephanie, Alan, Momma Connie (Alan’s mom)
Alan accepting Sara's DFL Rising Star Award, posthumously.
Alan & Sara
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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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