Monday, December 30, 2013

FAMILY STORY: Donnie Sills

Cindy & Donnie Sills

Another installment in our ongoing series of interviews with those affected by sarcoma. You can see all articles in the series right here.

The dictionary defines survivor as someone who carries on and we often think of those with the illness as the survivor. Many times, it is also true that the family and friends of those afflicted are survivors. That is how I would describe Donnie Sills: a survivor.

What was Cindy’s sarcoma diagnosis?
Cindy was diagnosed with rhabdomyosarcoma on 23 July 2012 – our 35th wedding anniversary.

What started out as what appeared to be a sprained ankle 2.5 months prior led to the diagnosis. She had two separate biopsies from two different hospitals.

Did she have surgery, chemotherapy, radiation, something else?
Cindy initially had both chemo and radiation treatments. She ended up having additional radiation following a brain scan that showed lesions. Her counts never climbed to where they needed to be to continue the chemo.

Chapel Hill is about three hours from here and that’s where most of her treatments were. I coined us Road Warriors.

"we had our first kiss - Cindy initiated"

Tell us how you and Cindy met.
It’s a unique story, how Cindy and I met. I am a sole survivor from a family tragedy when was twelve. My grandmother became my guardian. One day, my aunt took me with her to visit her friend. Cindy, also 12 at the time, was the daughter of my aunt’s friend.

They had horses in a barn and Cindy offered to take me up and show me. It became a family joke through the years that she had ulterior motives in taking me to the barn, but we were only 12 – it was innocent.

Through another twist of fate, Cindy came and lived with my family for a year. We were around 14 at that time. There was some flirting and we had our first kiss (Cindy initiated) to the song Sealed with a Kiss. She moved out and we lost track of one another for a few years.

I joined the Marine Corps when I was 18. Once, while I was on leave, my aunt coaxed me into going over to see Cindy. A year later, we were married.

Talk some about your family. Did you tell everyone right away about Cindy’s diagnosis?
We have three children – a son and two daughters. We also have five grandchildren – 3 boys and two girls. One of our daughters had a baby in January – the other had a baby in February.

We told everyone right away. Cindy had already survived a separate major health issue with a ruptured esophagus in 2004. Everyone knew she was a fighter. They were, of course, saddened about the diagnosis, but fed off her strength.

I was pretty much devastated when I started to learn about this terrible disease, but I gained strength from Cindy as well. I knew it was time to fight with her. Fight by raising awareness and funding for research.

What do you want us to know about Cindy?
Cindy never shed a tear for cancer. This became a theme for the interviews and statements given by Cindy to the media.

She was a loving person with not a mean bone in her body. She lived by the saying, “Don’t sweat the small stuff. It’s all small stuff.”

She was a loving wife, mother, and grandmother. She was the rock of our family.

Any funny family stories you care to share?
Cindy could make one heck of a lasagna. Once when my uncle was visiting, she had gone all out and made a delicious batch. He had been here for a couple of days and decided to leave before dinner. Even though he was persistent about leaving, Cindy had a plan: she hid his dentures! He huffed and puffed, but finally gave in and stayed for dinner. He passed away several years ago, but it has become a family legend to tell the story at big dinners.

Throughout her illness, how did your role as a spouse change?
My role changed quite a bit as I started taking on a lot of tasks that she normally did. Cooking, washing clothes, and dishes now became a norm for me. She could no longer work because of the extensive treatments.

At times, my work schedule was jumbled, but I am fortunate to have a flexible employer.

What things stayed the same?
Our love grew stronger through it all. It was tough watching the physical changes, but she always had a positive outlook through it all.

I can’t think of a thing that stayed the same – our whole life was turned upside down.

Do you remember thinking at some point that things would never go back to the way they were?
Cindy had the ability to bounce back many times, so through that and our faith, I always held out hope that things would get back to some sort of normal.

What were you doing to take care of yourself during this time?
I thought I was doing pretty good with that because I am a runner. I couldn’t keep up the schedule I used to have, but I still got out when I could. I also thought I was eating well.

I say, “I thought,” because I actually ended up going to the emergency room and spending a few days in the hospital for prostatitis. I think ultimately it was from worrying too much about things and that’s when I changed my attitude and fed off Cindy’s positive energy to fight back at the cancer however I could.

Did the two of you talk much about the end of Cindy’s life?
I tried several months before she died, but she wasn’t ready to talk about it. She just had all intentions of beating it.

There were a few things that came up in passing – like her telling the kids they need to keep an eye on me if anything happened to her. She was worried about how hard it would be for me.

Tell us about her final days.
Her final days were under home hospice care. When we first got her home, she was able to sleep in our bed, but eventually, we had to have a hospital bed put in the living room area for her safety and access to her.

There was a steady stream of friends and family. I took many private pictures. She was awake and aware pretty much through, but became unable to talk. She would communicate with her own variety of sign language.

A couple of days before she passed, she held up her fists to say she was still fighting. She also signed to me to stop worrying about her.

There was a lot of cuddling. We would take turns climbing into bed with her.

The hospice nurse ordered me to go get rest one morning when I was pretty much stressed-out from lack of sleep and seeing Cindy’s suffering. That’s when we decided to bring in volunteers to help out.

When did Cindy die?
Cindy died at 2:35 pm on September 6th.

This part, I have only told a few people: she had been suffering bad for the previous 18 hours or so. With every breath she took, there was a sound of pain. My oldest daughter (Amanda) and a friend were with us at the time. We are of faith, but my faith was really being tested.

I told my daughter that I was going away for a minutes. I went out to our sunroom and let out a big yell and had it out with the man up above. When I was done, a calm came over me.

I walked back inside, held Cindy’s hand, and a calm came over her. Her breathing became slow and relaxed. She appeared pain-free and had a peaceful look on her face.

Cindy opened her eyes – something she hadn’t done for a few days. She lovingly looked at our daughter and me. I told Amanda that Cindy was getting ready to go – and then she did.

"I still feel her presence around and it's a good feeling."

How are you doing today?
Today, I’m doing fine. I still feel her presence around and it’s a good feeling. The first month was extremely hard. I would walk into our quiet house and be stricken with sadness and loneliness. Now, when I walk in, I get a tingling sensation and it is comforting. I would like to think of it as her spirit hugging me.

I took a trip to Daytona for Biketoberfest. It was a change of pace that I definitely needed. Riding is a great hobby of mine and it’s also a way to raise awareness.

After I came back, I started in on remodeling our house while still keeping Cindy’s essence around. I purchased a painting from Landon Cooper, founder of Miles 2 Give, and its place is in the room where Cindy passed on. The painting was done in bright rainbow colors in the spirit of Cindy.

Rainbows have a special meaning for us because right after she was diagnosed with RMS, a brilliant rainbow appeared in front of our home. I called it Cindy’s Rainbow and it became a symbol of hope for us. Another rainbow formed there moments after she passed on.

I’ve gotten back into running more and always look for a good charitable race to run in. It’s something I like to do and it’s a way I can pay it forward.

I haven’t really found a new normal yet. I think after I get the house remodeled, I may get into some type of normal. I definitely want to spend more time with my grandkids. That is a high priority for me. They have a way of taking all your cares away.

"I intend to be happy."

What do you want for your future?
I want to continue with Cindy’s legacy of raising awareness. I really want to get heavily involved with that. I want to be around to witness a cure and I want to say that I was a small part in that happening.

I intend to be happy. Cindy would want me to be happy. I plan on living life to its fullest, as I know too darn well that there is no promise of tomorrow.

If you would give one piece of advice to other men who are caring for their very ill spouses, what would it be?
To stick by your wedding vows and take them to heart – in sickness and in health, until death do you part. Never give up on each other.

Cindy never gave up on anything in life. She is my hero.

As with all of our personal stories, please keep in mind that this is Donnie's story. Nothing here is meant to be medical advice and the ideas expressed here are not necessarily those of Sarcoma Alliance - though we wholeheartedly encourage second opinions with well-qualified specialists.

1 comment:

Maureen Rahrle said...

Donnie is my cousin and my hero. I pray that he continues to heal from Cindy's passing. Please consider donating to the Sarcoma Foundation in her memory.