Editing 'Terminally Optimistic'
It wasn’t a big thing. Many people may not have even noticed it. They might have just turned their heads, stared through the dusty, bus windows and gotten lost in the Peruvian mountainside and the music playing in the one earbud.
To Andrés, though, it was a lasting, meaningful impression that would stay with him throughout his life. And Eva had just made it.
It was 2007. Andrés was recently divorced and some friends suggested he join them on a mission trip to Peru with the group 'Smiles International Network (SNI)' to raise money for the cause. SNI is a Minnesota-based nonprofit that provides cleft lip repair and cleft lip palate repair surgeries to children and young adults in developing countries.
He flew into Lima, Peru, with a group of people from all over the United States. They planned a rigorous, 3-day hike up the Inca Trail to a remote village on the top of a mountain called Machu Picchu, Peru, where the group would help people in the small town. “It sounded fun,” recalls Andrés. “I was with a few friends and right away I noticed a very cute girl in the group. We just kind of got acquainted. There was something special about her. I remember: just after we arrived, we were riding in a mountain bus together, so we could get acclimated to the altitude in Cusco, Peru, and I noticed she was listening to some music. I asked her what she was listening to, and rather than just answer, she took one of the earbuds and put it in my ear, so we could listen to the music together. It was very special to me and really made an impression. “What I liked about Eva from the start was how sure of herself she was,” Andrés remembers. “She was very fit. I tried to keep up with her when we hiked up the mountain, but it was difficult because she was in such good shape. It did give me an incentive to keep up.” He laughs. When they returned to the United States, they started dating. They'd been dating for less than a year and things were getting serious when Eva was diagnosed with breast cancer. There was no question for Andrés - he was all in. “I didn’t know what to make of it. We were newly dating, but I knew I wasn’t ‘going anywhere.’ As soon as she was diagnosed, I became like a medical student and learned as much as I could about breast cancer.” 
Family travels to NYC!
Cancer changed everything – and quickly!
They went from being a couple who were free to explore the world together to two people who needed to learn a lot of things about cancer as quick as they could! People they knew, relationships they had, changed as well. “We changed from being active to always talking about Eva’s diagnosis. Cancer quickly takes over your life and it took over ours. We were suddenly asking questions like, ‘what is this all about?’, ‘what do we need to do?’, ‘what are the treatments Eva needs?’, ‘what are her chances?’, ‘what’s the prognosis?’ “Things changed with the people around us, too. When people find out about cancer, the first thing they say is, ‘oh, I’m so sorry.’ Well, that’s nice, but what isn’t said is this: ‘I wonder how long you have to live?’ Especially when you get breast cancer, which is STAGE IV, and people are really thinking, ‘oh man, that is a whole terminal disease!’" Eva had a lumpectomy soon after her diagnosis, followed by chemotherapy and radiation, which seemed to keep the cancer in ‘check.' In 2009, however, it came back and was now in her sternum and her spine. It was metastatic and required more radical treatment than before. Eva had a double mastectomy, followed by chemotherapy and a pinpointed, targeted, radiation treatment called Cyberknife.
The surgery and treatments warded off the cancer, and there is still no sign of it, but the treatments also caused serious health complications, including lymphedema and pulmonary hypertension. Lymphedema is a swelling and retaining of water in a person’s limbs. Because of her lymphedema, she needed to wear an air compressed suit at night that would allow the blood to continue to flow through her limbs and not allow fluids to be pulled in. She also began to take many medications and do exercises to keep the blood flowing through her extremities.
People with pulmonary hypertension cannot do strenuous activities, so for Eva, who was always ‘on the go’ and active, it meant she had to slow down. “We had been very active people before her cancer, but now she had to slow down, she had to curb her exercise routine. We used to visit friends in Colorado and go hiking there – that was out now, because she couldn’t go up in high altitudes because of the hypertension. If she goes up the stairs too fast, it’s trouble. “Her cancer is inactive now but it’s metastatic - it’s always there and we know that. “She's slowed down in some ways, but she still keeps as busy as she can," Andrés says. "She is a master knitter and teaches knitting as well. A lot of time, she donates what she makes. She also loves to work in our garden and yard as well as go on our boat and is outside as much as possible. We have a personal trainer who comes to our house and keeps her as active as she can be.” 
Quilt Accomplished!
As Eva slowed down, Andrés had to change his lifestyle, too. They used to do everything together - they'd travel, hike, go on vacations around the world, do yoga, they did a lot of inline skating, and now, many of those activities weren't possible for Eva.
Cancer brought Andrés new stresses, new worries, new questions, and he found himself surrounded by people who wanted to help Eva but few who could relate to what he was going through. 
Enjoying river life
Many caregivers silently struggle as they support their loved ones.
They find it difficult to talk about their struggles: they don’t want people to think they’re complaining; they don’t want to ask for help and come off as ‘needy;’ they don’t want to admit they need help and try to do it all alone. What makes it worse, many times, is that they don't know anyone who can relate, so, rather than reach out, they turn inward. They become alone. By 2014, this is where Andrés found himself. He didn’t have a support network. He didn’t have a mentor who had ‘been there’ and could offer support based on experience. He struggled. “My low times are when I go down that rabbit hole of ‘what ifs,’” Andres says. “When I start to consider what it will be like without Eva. Where do I go? What happens then? "I didn't talk about it. I didn't know anyone who had gone through what I was going through. That was my challenge." Eva had found support and mentorship in a group called the Cancer Support Girls, through the University of Minnesota. One of the people in the group, Kim Cesarek, suggested that Andrés check out Jack’s Caregiver Coalition, which her husband, Dustin, had co-founded. “It took two or three times for Kim to mention it to Eva, then Eva to mention it to me, before I finally decided to go to a Jack’s meeting. It was life-changing! Jack's was a place I could go where I could talk to people freely about what I was thinking, without being judged, or without feeling like I was being overdramatic about my caregiving experiences. “They held monthly meetings with members where we would get together and have dinner and just talk about what we were going through.” In Jack’s early days, meetings were held in Golden Valley at the Gilda’s Club facility. Back then, these were monthly meetings, where members would get together and share a meal and just talk about life. Later, as Jack’s grew, activities evolved into one-of-a-kind events that were fun with members as well as sharing a meal. “Jack’s provides a great outlet for men to go and feel safe talking about their spouses or significant others who have cancer or who have passed away from cancer. These men have cared for them or are caring for them, often without any help or support, and they sometimes have nobody other than Jack’s members to talk to about what they're going through. “As men, we don’t seek out that sort of thing. I felt safe talking about really personal, sometimes painful stuff, because most of the guys have gone through similar things. "It’s funny, you meet people at Jack's just once or twice, that's all it takes – it’s an instant recognition the next time you see them. We talked from our hearts. I may be depressed that day; I may be dealing with something and just want to tell someone about it. Jack’s gives me that!” 
When he was young, Andrés emigrated from Venezuela to the United States to study at Iowa State University. He studied to be a mechanical engineer, but it was in a ‘side job’ that he found his true passion, his true calling.
“I was working as a cameraman and never looked back,” he recalls. After college, Andrés moved to the Twin Cities, became a cinematographer, raised two daughters, and eventually founded his own cinematography business called VenUS Directions, specializing in human interest documentaries and other facets of video production. “I like stories that focus on the human spirit. I like stories of triumph. That’s my focus now. I finished a film in 2016 that dealt with DACA and immigration.” Three years ago, he drew on his experience with metastatic breast cancer and began a new documentary called ‘Terminally Optimistic,’ which humanizes the journey of having metastatic breast cancer. The film focuses on three couples who are dealing with metastatic breast cancer, including himself and Eva, Dustin and Kim Cesarek, and their friends, Krissy and Ron. The film premieres in March 2021 and has already garnered a Best Documentary feature finalist spot at the New York International Film Awards. “The film is not intended to be an education of breast cancer but is a look inside what life is like as a metastatic breast cancer patient and their caregiver. You are not going to die tomorrow, but you will die. Through it all. though, life continues. “There’s a whole life journey and, sure, your life changes with the changes that cancer brings, but you need to keep on that journey. You need to keep living and remain hopeful. Life is different, but it is life. “I want to humanize these journeys. These are the same people that they were before the terrible diagnosis – they’re just dealing with so much more now. I just want people to see this. I want people to see that the best they can do now is ask, ‘what can I do to help?’ Or to just do something without asking. “If you know someone with cancer, don’t be afraid to ask if you can help. Talk to them. Take them out. “These people are the same as they were before cancer struck; nothing has changed - they just need more help and understanding.” 
Superbowl in Minneapolis 2020
Andrés and Eva have learned to live with cancer. They’ve adapted. They’ve grown. They still have fears, anxieties, and never-ending worries, and they understand the implications of metastatic breast cancer. But cancer hasn’t taken over their lives. It doesn’t control them and they're determined to not let it. They recently celebrated a milestone - after 12 years of ‘dating,’ Andrés proposed to Eva last New Year’s Eve. “After 12 years of careful consideration I proposed to Eva - I didn't want to rush into anything," he laughs. "Because she doesn't wear rings. I gave her an emerald pendant from Columbia, which my daughter helped me pick remotely as she was travelling in Columbia at the time. "We started talking about marriage hypothetically - about what it would be like to have a wedding reception, and that sparked the conversation. As it turns out, thinking about marriage and then getting married gave us a feeling of being centered, happy, and excited. We are so glad we did it!" They were married in August 2020 in their backyard, with 10 people in attendance and many other friends and relatives via Zoom, due to Covid restrictions. 
Life as a married couple
Just like the theme of his documentary ‘Terminally Optimistic,’ they’re ‘just traveling on the cancer journey’ together, adapting to the changes and challenges cancer brings.
"We have optimistic plans for the future," Andrés begins. "That optimism comes from how Eva has dealt with her disease. We don't dwell on the 'what ifs', but rather on spending our days in the best way possible and making plans, just like any other couple - within the same constraints of her cancer and other illnesses." They’re not giving up, and they’re optimistic about the future and their lives together. Their marriage proves that optimism! It’s their new adventure.
Like the story? Like the cause?
We need your support to thrive and grow. Consider supporting Jack's Caregiver Coalition by supporting our mission in several ways: through membership, financial support, or with your time as a volunteer. 
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. Mike has been a Jack's member since 2017.
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.
Catch up on other AARP spotlight stories you may have missed:
0 Comments
Leave a Reply. |
Categories
All
|
RSS Feed
ABOUT JACK'SWelcome to the not so secret club for caregivers. We're a non-profit on a mission to improve the way guys think, feel, and act through every phase of their caregiving journey.
EIN: 47-2305806 
|
CONTACT US |
Copyright © 2023 Jack’s Caregiver Coalition®, a 501(c)(3) nonprofit organization