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 35^th 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 6^th.

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.

INTERVIEW: Alison Olig, Sarcoma Alliance Executive Director

Alison Olig, Executive Director

Last week, Sarcoma Alliance announced that Alison Olig has been selected as our new Executive Director (ED). In preparing the questions for this first interview with Ali, I thought it would be interesting to start with the same first question I asked of retiring ED, Arthur Beckert . . . .

How much did you know about sarcoma before you started your work with Sarcoma Alliance?

Prior to volunteering with Sarcoma Alliance, most of my sarcoma knowledge came from personal experience. At the age of thirteen, I was diagnosed with alveolar rhabdomyosarcoma. My treatment included eleven rounds of chemotherapy, five surgeries, and radiation. I am happy to share that I have been cancer-free since the end of treatment.

Through my experience with sarcoma, I developed a deep understanding of the physical, mental, and social ramifications of the disease and its treatment, both to patients and caregivers. By volunteering with the Alliance I gained a much broader understanding of sarcoma, the more than fifty subtypes, its treatments, and the various needs of those affected by connective tissue cancers.

How does being a sarcoma patient make you uniquely qualified to be the Executive Director of Sarcoma Alliance?

Two main reasons come to mind:

The first is mentioned above, in that I have a genuine clear understanding of what someone goes through as a sarcoma patient. I know what it feels like to sit in a doctor's office and be told that I have cancer, to deal with side effects that sometimes seem as challenging as the cancer itself, and to watch the toll it takes on those I love.

The second is that I can state, without a doubt, that I am completely and utterly committed to the work of Sarcoma Alliance. I am passionate, dedicated, and will put everything I have into furthering our mission. 

This is not, not will it ever be "just a job."

Can you tell us more about your professional background?

From high school on I hoped to eventually have a career in nonprofit management. In furtherance of that goal I obtained a B.S. in Finance, followed by a J.D. Throughout this time I was also very involved with various nonprofits, gaining valuable experience along the way. 

After graduating from law school, I worked as an attorney and then in regulatory compliance, all while staying committed to developing my nonprofit skill set. I volunteered for Sarcoma Alliance for several years, specifically as a Board Member for the past three years and as a member of the  Executive Committee for a majority of that time.

How will Sarcoma Alliance stay the same under your direction? What changes are you looking forward to? What are the priorities for the Alliance?

Our retiring ED, Arthur Beckert, has accomplished much in support of our mission to provide guidance, education, and support for everyone affected by sarcoma. I hope to continue, and grow upon, this work as well as his commitment to honoring the legacy of our founder, Suzanne Leider. This work will include efforts toward current programs like our Assistance Fund providing grants for second opinion consultations, our Peer-to-Peer Network, and our Facebook Support Group. It will also include new endeavors, such as expanding our working relationship with social workers and increasing sarcoma awareness among general practitioners.

The biggest challenge at Sarcoma Alliance has been obtaining the funding necessary to grow programs. I will work with our Board to generate new sources of funding - and to assist those who wish to fundraise on our behalf - to ensure continued support of the sarcoma community.

Finally, what do you want us to know about you?

How incredibly honored, humbled, and excited I am to have this opportunity. 

But for a little about myself - I am married to an amazing man, and together we love spending time with our six-month old son, two dogs, and two cats. They keep me laughing and on my toes, and I wouldn't have it any other way!

To learn more about Sarcoma Alliance and our mission to support those affected by sarcoma, please visit our website.

ANNOUNCEMENT: Alison Olig, Executive Director

Sarcoma Alliance has announced the selection of Alison Olig to the position of Executive Director. Prior to accepting her new position with the non-profit organization, Ms. Olig had served on the Board of Directors and was a member of the Executive Committee.  Arthur Beckert, Executive Director for the past ten years, is assisting with the transition leading up to his retirement in January, 2014.

"After an extensive search involving candidates from around the country, we couldn't be more pleased to have Alison on board as Executive Director. She has already made a tremendous impact as a Sarcoma Alliance board member and we are confident she will bring the same energy, intelligence and compassion to her new role as Executive Director," said James Johnston, President of the Alliance.

Ms. Olig herself was diagnosed with sarcoma at the age of thirteen.  "Through my experience with sarcoma, I developed a deep understanding of the physical, mental and social ramifications of the disease and its treatment, both to patients and caregivers," said Ms. Olig.

Sarcoma Alliance is the only national organization with the sole mission of providing information, guidance, and support for people affected by sarcoma - a set of rare connective tissue cancers. The Alliance also offers grants for patients seeking second medical opinions. 

For more information about Sarcoma Alliance, please visit sarcomaalliance.org or call 415.381.7236

SARCOMA SURVIVOR STORY: Ilene Fishman Goodman

Ilene Fishman Goodman

The feedback from our series of personal stories has been incredible. View all of the stories here. And please consider joining us over on Facebook for more discussion, information, and support. 

When I approached Ilene about participating, her response was quick: "I would love to be interviewed. . . I really like sharing my story with others to give them hope." 

This is her story ...

What was your sarcoma diagnosis?

Leimyosarcoma

In what year were you first diagnosed?

1995, when I was 24 years old.

How are you feeling today?

Really good.

Tell us a little about yourself.

I’m married. No children, two cats. Right now, I’m unemployed, but I did administrative work for 20 years. I live in Baltimore, Maryland, and I like to go shopping, go out with my girlfriends to dinner, and exercise when I can.

"They said it was a virus"

What is your diagnosis story?

Before I found out I had cancer, I was pregnant with our first child. At 28 weeks, I started getting swelling in areas you shouldn’t get swelling from pregnancy. Eventually, I went to the hospital and they found out that I had a lot fluid around my heart and lungs. They said it was a virus. I stayed in the hospital for a week to have the fluid drained off from my heart and each lung.

I went home and felt much better.  At 32 weeks, I went for an ultrasound and they couldn’t find the baby’s heartbeat. Unfortunately, the baby had passed away.

Two weeks later, I wasn’t feeling well. I had a rapid heartbeat and was out of breath. My parents took me to the hospital where I was told I had fluid around my heart again. They decided to put a window by my heart so the fluid would just drain out if it happened again. It was when I went in for that surgery that they found the tumor.

Did you have surgery, chemotherapy, radiation, something else?

I had eight rounds of chemotherapy (called MAID) over a period of around eight months. Every three weeks, I went to the hospital as an inpatient for four days for the chemo treatments.

After chemotherapy, I had a ten hour surgery to remove the tumor. It was growing from my diaphragm, close to my heart and into my liver. They removed my diaphragm and replaced it with Gortex and mesh. They removed the portion of my liver that was involved with the tumor. However, the liver can regenerate itself.

"I feel really good about my health now"

Was your life on hold while you battled sarcoma?

As far as my job was concerned, it was. I was very fortunate that I worked for a small company – they kept my job until I got better.

As far as my life and living it, I would say when I felt good, I would go out and do things as much as I could. I had six weeks between the end of chemo and my surgery so my body could recover from the chemo. In this time, I planned and did so many things with family and friends. Not because I didn’t think I was going to make it through the surgery, but because during the chemo, at times I felt like a prisoner and having this break before the surgery – I wanted to do as much as I could.

Have you had any long-term side effects from treatment?

Not really. I do sometimes feel I have chemo brain, but other than that, no long-term side effects.

Are you still seeing your treating physicians?

I see the surgeon who did the surgery once a year and get a scan before I see him.

How do you feel about your health now?

I feel really good about my health now. During the first ten years or so, I would definitely get anxious, but only right before my scans and check-up with my doctor.

The rest of the time, I wouldn’t think about it because I have always felt that if I thought about it or worried constantly, then the cancer would have won and I won’t allow that to happen.

As an 18 year survivor, it really is never on my mind anymore.

How were relationships with your family and friends impacted?

Although we were a close family before, my relationship with my family grew closer.

As far as my friends were concerned, I found out who my true friends were. A friend I thought was close turned out to abandon me during my illness while another friend who I wasn’t very close with was there during my entire illness.

How is your life the same or different now?

My life is very different since I was diagnosed and treated for my cancer. I am not the same person I was before I had cancer. I am a stronger, much more confident person. Once you beat something like cancer, you can never be the same person again.

I have given speeches and talked with people who were newly diagnosed and met some amazing people. I also try to live every day to the fullest because you never know what will happen tomorrow.

I appreciate the small things that I never really noticed before – like when the flowers bloom in the springtime, stars in the sky, and the smell of the ocean.

"...they only expected me to live six months"

And, finally, what is your biggest piece of advice for someone who is newly diagnosed with sarcoma?

No matter how dim it may look, never ever give up.

When I was diagnosed, I was told they only expected me to live six months. Here I am 18 years later.

Surviving and going strong.

A reminder: Ilene's story is her own personal story. Nothing here is meant to be medical advice and any views expressed here are not necessarily those of Sarcoma Alliance. (Though we do believe in living life to the fullest.)

NEWS: Annual Appeal

Each year, Sarcoma Alliance sends an end-of-year printed newsletter to our supporters. It's our opportunity to toot our own horn just a bit.

We have given over 500 grants for second opinions. 

We have over 2000 members on our amazing Facebook Support Group. 

Our retiring Executive Director (Arthur Beckert) writes about his experiences with Sarcoma Alliance and the people he has met along the way.

Board of Directors President (James Johnston) discusses our important role in the sarcoma community and our position as the only national organization whose sole mission is information, guidance, and support for people affected by sarcoma.

You can read the entire letter at this link.

Sarcoma Alliance relies heavily on the community we serve for funding. If you have been affected by sarcoma and you have found value in the services we offer, please consider a donation to Sarcoma Alliance. Your donation may be tax deductible, but must be sent by the end of the year.

Thank you.

ANNOUNCEMENT: Arthur Beckert Retires

Arthur and Betsy Beckert

Last month, Sarcoma Alliance announced that our Executive Director, Arthur Beckert, is retiring.

At the same time, the Alliance announced the dedication of The Arthur Beckert Education Fund - a Sarcoma Alliance fund committed to the education of sarcoma patients, families, caregivers, and Sarcoma Alliance staff. Click here to make a donation today.

While we are going to miss Arthur, we will be forever grateful for his many contributions to Sarcoma Alliance and our mission.  We are also looking forward to a bright future with our new Executive Director - stay tuned for news on that very soon - Arthur and the new Director are already working together to assure a smooth transition.

Arthur was kind enough to exchange a few emails and sit down with me to discuss his time at the Alliance and his plans for retirement.

How much did you know about sarcoma before you started your work with Sarcoma Alliance?

Immediately after I was hired as the Executive Director, I reviewed all of the Sarcoma Alliance resources and remember feeling a bit overwhelmed by the number of subtypes (more than fifty). Other than osteosarcoma and Kaposi sarcoma, I was not very familiar with sarcoma. I even remember trying to figure out how to pronounce some of them, such as leiomyosarcoma and rhabdomyosarcoma.

Through my previous work with the state medical association, San Francisco General Hospital, and various health insurance companies, I knew the issues that someone faces during an unexpected health crisis or devastating diagnosis. What I most needed to learn were the special challenges that people with sarcoma face. For example, getting good information about the diagnosis, where to get treatment, what treatments might be suggested and why.

You've been with us since 2004; at some point you must have decided that this was more than "just a job," can you recall when that was?

There was no single moment when I realized that being a part of Sarcoma Alliance was more than the responsibilities outlined in the job description.

During my career, I have always looked for positions that challenge me professionally and put me in touch with great groups of people. When I started with Sarcoma Alliance, I was excited by the opportunity to lead and help shape such an important organization.

At the time, the Alliance was being managed by an extraordinary group of volunteers - family and friends of our founder, the late Suzanne Leider. This early Board of Directors made sure that the Alliance would continue to exist and be able to grow during the coming years by continuing its mission and raising sufficient funds to hire full-time staff. They were the ones who gave me a firm understanding of the needs of the sarcoma community.

Arthur Beckert and sarcoma survivor Jared Holmes

You have connected with some pretty incredible people during your time with SA - are there any that stand out in particular?  

It would be impossible to choose one person or even a small group of people. There have been so many meaningful discussions over the years.

I have to say that I have been very fortunate to work with such a great group of Directors at Sarcoma Alliance. They are committed and passionate about the mission, and very supportive of me. 

I am always impressed with other advocates and their incredible commitment to the sarcoma community, whether it is support of the individual or working to improve the diagnosis and treatment of sarcoma.

Finally, and most importantly, are the hundreds of conversations I have had with individuals affected by sarcoma. Often, they desperately want to talk with someone who can give them accurate, honest advice and recommendations. Their gratitude, even when I am not able to give answers that I wish I could, is palpable.

The most difficult of these calls are from those who have an expectation that we will be able to give them “The Answer,” that single perfect piece of advice for their situation. 

What is your proudest accomplishment in your work with SA? What would you have liked to accomplish?

The greatest gift I have given the Sarcoma Alliance is its success and stability over the last nine years. It was an exciting transition from an organization that was run by an all-volunteer Board of Directors to one with full-time paid staff.

The Alliance has been able to accomplish so much and like any dynamic organization my to-do list is always growing just about as fast as other items can be checked off. I will be happy to pass my list on to my successor and I am sure there will always be new projects.

The Beckert Family, Hawaii 2012
Front: Arthur, Betsy, Molly
Back: Spencer, Rachael

The image of retirement is changing so quickly. What does it mean to you? How will you spend your first day of retirement?

During the week, I get up at 5:05 AM. I’ll never be a late sleeper, but after I retire, my 5AM wake up calls will be something of a fond memory. 

I begin most days with a run – either on the roads of Mill Valley (California) or on the trails of the incredible parks we have nearby. I have been running since 1966, the routine won’t change after retirement, but I will be able to start a little later and run with some of my wonderful friends rather than facing dark, and the sometimes cold, wet mornings by myself.

Fortunately, I love working around the house and in our garden because there’s a lengthy list of projects waiting for me.

My wife will retire next summer and together we will hike on the many miles of trails throughout Marin County. We also have a “bucket list” of travel adventures that is much longer than we will ever be able to accomplish - we will have to prioritize.

There will also be lots of time with my three kids who are involved in incredibly divergent careers of medicine, nonprofit work, and animation.

One thing I won’t be – bored.

And, finally, what is the biggest piece of advice you have for the person stepping into your shoes?

The focus of the Sarcoma Alliance is guidance, education, and support for everyone affected by sarcoma. The next Executive Director needs to be a good listener - sensitive and compassionate with advice and support. 

Sarcoma Alliance supports those affected by sarcoma. All of the services we provide are offered at no charge. To make a donation today, please visit our website.