Tom Scott: Giving all he had and finding all that matters most.
A lot has changed for Tom in the past 3 years.
Three years ago, his wife, Dani, was diagnosed with breast cancer and given 3 years to put her ‘affairs in order.'
Early in the spring of this year, two and a half years after her diagnosis, Dani passed away.
Tom’s whole world is different now.
Things that were priority before aren’t as important as they once were.
Careers, trips to exotic places, savings for college or retirement, unique experiences – all these things are not as important as the here and now. What he has right now – right in front of him; what he can see and love – those he holds dearest – these are things he treasures most.
As Dani’s condition became more grievous, Tom became that caregiver for everything that mattered to him in the world.
But after 3 years of caring for Dani and his family, and ultimately losing her to cancer, he found himself worn out, lost, and angry.
Dani & Tom
Dani and Tom met in 2003 and started dating in 2007. They were married in 2013.
They were career people, with goals of an early retirement and living in the Caribbean for a couple of years while the kids went away to college. They were planners - everything was by the book and they followed the routines. They loved gatherings, cooking, the tropics, and just being outside.
They were never into 'things' but instead were always seeking an experience.
A lot of things drew Tom to Dani
“Dani was an extremely patient person who would do anything for anyone without the expectation of getting something in return.
“The thing I admired about her most was something I saw in her during her cancer battle. People would call to see how she was doing, but Dani always ended up finding out how the other person was doing and what she could do to make things better for them. She gave everything she had to all of her acquaintances."
It was a hot and sunny day and then ‘holy crap, we have to battle cancer!’
In July 2017, Dani felt three lumps in one of her breasts. She knew something wasn’t right and was referred to an oncologist, who ordered a biopsy on the lumps.
She was diagnosed with cancer the same day that she had her biopsy. Doctors didn't know how far along the cancer was at the time but they knew it was very progressed and told her, 'you have 3 years to get your affairs in order.' Despite the bold, terrible bedside manner, the doctor was right - Dani died two and a half years later.
“We never told a single soul of the 3 year timeline. It was so sad, but we didn’t want family members or friends to know. We didn’t want anyone else to carry that burden.”
Hope where none seemed to be found
To the Scotts, it was simply another task, another hurdle, something they had to do.
"There were tears, of course, and it sucked, but we owned it and moved forward with a positive outlook.”
Despite the dire prognosis for Dani, the Scotts decided to fight the cancer. They chose hope where none seemed to be found.
Dani’s immediate treatments were chemotherapy, a double mastectomy, then radiation.
During her treatments, there was a 2-month period when doctors thought that she was cancer free. It turned out that they were wrong.
“We remained optimistic through it all,” Tom says. “There’s nothing wrong with that. I wish more people would be optimistic when they get such an extreme diagnosis, because it could be just one doctor’s opinion. It wasn’t a fact, although the prognosis turned out to be ‘spot on.’
“We hoped we could alter the course of her cancer.”
Treatment continued for Dani, but over the years, things weren’t improving – they kept getting worse. The cancer was spreading. The toll of treatments and cancer were weakening her body.
“Every day that I got up, I knew that it was going to be better than tomorrow, because tomorrow would be so much worse!
“So, I would just wake up every morning and try to do my best.
“The caregiver role was fine for me. There were a lot of doctor appointments, but the actual tasks, the duties, were fine. I actually took pride in it. I love cooking, and cleaning doesn’t bother me. I was simply doing what I promised to do in our wedding vows.”
He couldn’t do it all alone, though. He needed help.
Despite a clear need for help, it was a hard thing to ask for.
“It wasn’t that I finally asked for help; more, I submitted to it. It was tough at first, admitting that I needed it. Then, you get that first text message or the letter from someone asking if they can ‘do anything for you.’
“You’re like, ‘I have no clue what I need. I have no clue what you’d do to help me.’
“But eventually, you accept the help. They pick up a prescription for you. Or they bring dinner over for you. You just take the help. And as things get worse and doctor’s appointments become daily, it becomes really cool to see people who you didn’t expect to step up to the plate, and they really come through!
“Dani had some co-workers that really helped her. My parents helped out a lot. It was kind of a neat thing to see people put their own lives on hold to help you out.
“It’s amazing that there are so many people out there who just want to help you out. They want to do something because it’s the right thing to do.
Finding the right perspectives
About a year ago, right after the State Fair ended, Dani's health started to get worse. She spent two weeks in the hospital having her lungs drained of fluid. She went on oxygen and never came off of it.
About that time, Tom saw a Jack's poster for a caregiver Klatch that caught his eye.
"The Klatch concept is not your ordinary cancer education or support group. It provides attendees a welcoming environment with a backdrop for skilled peer facilitators to guide guests through a structured dialogue around caregiver issues, decided upon by the group. Klatch participants are sure to gain validation, helpful advice, a sense of belonging, and restoration." - Alicia Cain, Virginia Piper Cancer Center
The Klatch gives cancer caregivers a forum to relate to others who are dealing with cancer and all the challenges that go along with it.
“The poster laid it all out for me, telling me exactly what the Klatch was. I told my wife, ‘I’m going to go to this,’ and I went. The meeting was powerful. Right from the first, it was a very powerful thing for me. I saw that there are a lot of people going through exactly what I was going through then.
“There were a lot of people from a lot of different points of view but all agreeing and helping. We didn’t talk about elections or politics or other things that people get so hung up on.
“They all could get what I was going through then, and I got what they were going through as well. It was really cool to sit in a room with people who understood.
“It was a new perspective for me – something I hadn’t expected. It was really cool. We just talked about things - things that mattered to us.”
Breaking it down
During the second or third Klatch meeting that Tom attended, he and a few other members 'broke down' the pure 'people' hours that caregivers spend on a given day. They estimated that if their loved one was in the hospital, there would be 12 people caring for her during a 24-hour time period.
“So, we figured that caregivers are doing the job of 12 people just to care for their loved one. That’s not even counting taking care of the kids, the house, working, and everything else that you normally do and what your spouse used to do.
“Just getting that perspective from others who are living it was so helpful to me. I knew that I needed to ‘work’ that Klatch time into my schedule whenever it came up. I just had to make it work! I was feeling so refreshed from those meetings. I was able to invest a little bit of time and get new ideas from others. I was able to unload so many of my frustrations and my burdens.
“It was so refreshing!”
I was able to share my story
“I felt comfortable sharing my story with these people. Telling them that my wife’s cancer had moved to her brain. That she was losing control of the right side of her body and I basically had to carry her. I mean, I had to carry her to the bathroom. I had to carry her everywhere.
“And then there was another person at the Klatch who had gone through the same thing with his wife. He understood it. He could relate. It was amazing to be able to connect that way.”
Dani passed away in April of this year, after a 3-year battle with breast cancer.
At her funeral, the pastor told the congregation that in his 20 years of ministry, he’d never met a couple that loved each other the way Tom and Dani did.
“Dani didn’t lose any battle. She never let cancer beat her. She was always the same positive, loving person she always was. She may have moved slower, and eventually not at all, but she still had a way about her that would light up a room. She still cared for others more than herself.
“Her very last words that she ever spoke – about 14 hours before she died – were, 'I love You, Emmett, and Mia so much!' The 3 of us meant more to her than anything in the whole world. She could have just as easily told me how much pain she was in, or how much cancer sucked, or mentioned any other crappy thing that was happening, but she didn’t.
“She expressed love and gratitude, because that was who she was. Cancer couldn’t take that away from her.
“I didn’t ‘lose my wife.’
“She lives on with me as I try to be the very best parts of her every day.
“I try to be as patient as she was.
“I try to love my kids as much as she did.
“I try to help people the way she did.”
Two months after Dani’s death, the weight of the past 3 years finally hit him.
Tom has taken pride in the caregiver role he played and considered it an honor. He thrived at the daily required tasks that were 'above and beyond.' He even reached out, stepping outside his comfort zone and admitting that he truly couldn't do it all alone He was with Dani and their kids throughout it all, supporting his family in every way he knew how.
Slowly, though, over the years of taking on so much and seeing his wife's health decline, he began to wear down. He began to be grumpy. He began to tire.
“The stress of watching my wife die was enormous,” Tom says. “I was grumpy and short tempered. It snuck up on me. I didn’t realize how unhappy I was until a month or two after she had died."
Getting his smile back
He’s still adjusting, still accepting the reality of it all. While time may heal some wounds, it doesn’t heal them all. That may never happen.
“It’s been five months since Dani passed away. There’s still a huge void and there always will be. I constantly find myself looking in drawers, looking at pictures, staring in closets and doing other odd things for extended periods of time as though I’m looking for her. It’s a strange thing. I’m sure people that haven’t experienced loss won’t get it. It makes me chuckle when I catch myself. It’s like my mind misses her, but it didn’t bother to tell the rest of me until it noticed I’d been staring at one of her belongings for WAY to long.
“I certainly have gotten my smile back. It took a while, but it’s not the same. It may never be. I smile for different reasons now. I find that I enjoy the time I spend with people rather than for the experience we have. An example would be going to dinner but having really bad food. The ‘old’ me would have not remembered that as a good time. The ‘new’ me enjoys every bit of the experience I can and finds humor in the negative. "
Tom eventually lost his job due to COVID-19 and the extended leave of absence that he took from work. He's choosing not to get back into the workforce quickly so he can take time for himself and for his kids. So they all can take time to reconnect and try to find the pieces of their life.
“I’ve been enjoying time with my kids and am trying to do a ‘reset’ on life. We’ve spent a lot of time travelling as a family and doing things like that. Now, I’m starting a website called ‘Tents and Tikis’ that is all about travelling, camping, tips and tricks, and things like that, I am turning my passion into a hobby that will hopefully make a little bit of money and am including my children in the experience rather than leaving them at daycare while I go work for someone else.”
“Every day is a gift”
“I try to make each day better because I’ve experienced worse days. We may experience worse days again. We try to cherish what we can.
“I always tell that to my kids. When they throw a tantrum over something, you know, I just ask them, ‘is this really a big problem or a little problem, because we’ve had big problems.
“It just helps put things in perspective, for me and the kids. It brings clarity to the day.”
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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. Mike has been a Jack's member since 2017.
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