Author Archives: Marcia at MyLifeLine.org

Jen + Britton: Inspiring Compassion and Caregiver Awareness on first ever National #Ribboning Day

At MyLifeLife.org, we are blessed and inspired by the unique and extraordinary stories shared by our members.

Today, July 16, is a celebration for two reasons. It is not only the wedding day of special friends, Jen + Britton. It is also the first National #Ribboning Day, inspired by Jen + Britton’s journey from love to loss to love again.

Jen has said this isn’t your average “boy meets girl” love story. Jen and Britton met after tragic circumstances. They married the loves of their lives, Ruben and Jax, who both passed away from cancer just months apart from each other in 2011 and 2012, respectively.

Jax and I bonded when she was using MyLifeLine.org after her breast cancer diagnosis. She became an advocate for our cause, a volunteer and a friend. My favorite memory was when I visited her home with my 6-year old son, Ryan. She was so frail and so sick. Despite how she was feeling, she lit up when Ryan sat on her lap and they worked on a puzzle together. She wore a silly hat to make him laugh, and I took a photo of them together. I was shocked when Jax passed away a month later. She was young and positive and hopeful, which seemed immortal to me. I had met Britton, Jax’s husband, a few times and admired the way he cared for her.

I met Jen soon after Ruben passed. As Jen would say, she “searched” for me when she heard I was visiting the LIVESTRONG offices in Austin where she worked at the time. She graciously thanked me for creating the platform she needed to galvanize her personal community during Ruben’s time throughout hospice care. Jen used MyLifeLine.org to describe to her friends and family that they were living, not just dying, until the very end. Even when Ruben’s prognosis was grim, he squeezed more life and vitality out of his days.

While Jen + Britton struggled to cope with their devastating losses, I thought of them often. It didn’t feel right that they should suffer alone.

Since Jen lived in Austin, and Britton lived in Denver, their paths were not likely to cross. Until one day, an idea sparked in me…maybe they can help each other. Maybe they can find comfort in knowing someone else in the world just went through the same hell.

They gave me permission to introduce them over email and started writing to each other. Communications were slow at first, and eventually Jen came out to Colorado, and they met in person.

Happiness alert! The bonding created over their shared grief became more than that over time. They fell in love, Britton moved to Austin, he proposed, and they are getting married today.

The entire MyLifeLine.org team is celebrating the union of two people who deserve all the happiness in the world. As Britton says, Jax and Ruben are irreplaceable. Jen + Britton will move forward by framing this as a new chapter, and they are grateful to spend it together.

Now, how does their story connect us to National #Ribboning Day? At MyLifeLine.org, we started #ribboning last year on Instagram as a way to humanize the cancer ribbon you see on cars, retail windows and advertising on all channels. #Ribboning has come to symbolize that cancer is not about the color of a ribbon….it’s about the people. Cancer may be a disease, but it’s also a community, and we believe in compounding the emotional benefits of human support and unity.

#Ribboning is simple – have someone take a photo of you in the shape of a cancer ribbon and post it on Instagram. This movement caught on and people from all over the world have posted #ribboning photos to show support for cancer patients and survivors.

Jen + Britton inspired us to take #ribboning further and to proclaim their wedding day as National #Ribboning Day to raise awareness for the unique needs of caregivers. The emotional tidal wave of cancer doesn’t just hit the individuals diagnosed; it also hits those people closest to them.

On their own, Jen + Britton created a fundraising page to ask wedding guests to donate to MyLifeLine.org to “keep love going.” This fundraising page evolved into us creating a video that shares their story in their own words, and then the fundraising page migrated over to IndieGoGo with a bold goal and shared vision to raise awareness and funds for an organization dedicated 100 percent to providing free communication tools and services for cancer patients, caregivers, family and friends.

I hope you’ll join me in celebrating Jen + Britton’s wedding and National #Ribboning Day!

Visit our IndieGoGo page for Jen + Britton’s video story and learn about the #Ribboning Relay that will move MyLifeLine.org forward in our mission to serve millions of families in cancer’s wake.

Jen + Britton

Cancer Caregiver Needs Overlooked for Too Long

Marcia

Marcia Donziger

Last month in Denver, I experienced the CancerCon Conference for the first time. Hosted by Stupid Cancer, hundreds of young adults fighting cancer gathered to meet, make new friends, share stories, learn about resources and discover they were not alone.

I was asked to facilitate a workshop on peer support for caregivers – the spouses, parents, children, siblings, significant others – those taking care of patients at home 24/7.

My colleague, Jill Mitchell, Phd., led the session with me. Jill is an oncology social worker at Rocky Mountain Cancer Center in Boulder, Colorado, and a long-standing member of the MyLifeLine.org Oncology Advisory Council.

Fifty participants attended our session and the room was full. Do you know what surprised and impressed me the most? Ninety percent of these participants were men, specifically husbands caring for wives with cancer.

These men looked battle-weary in the aftermath of cancer hitting their homes. Yet they were brave – ready, willing and able to be vulnerable and share fears with each other in our group setting. Not your stereotypical expectation of men!

We began the session by asking what the biggest challenges were. The answers weren’t surprising:

  • Fear of losing their loved one
  • Loss of control of their lives
  • Cannot see what the future looks like
  • No time to take care of themselves
  • Financial burdens

One man had a “deer in the headlights” look, absolutely terrified of this horrific world that cancer brought down his fiancé. One week after he proposed to his girlfriend last summer, she was diagnosed with ovarian cancer. She is 26, and is now newly diagnosed with a second type of cancer.

Another man shared that his wife is in remission, and it’s even harder to be a caregiver after the medical treatment ends. As a man, he said he needs to fix problems. During active treatment, he was busy and productive – driving her to the doctor, assisting with treatment decisions, monitoring medications, making meals, and more. Now that her treatment is over, he is feeling lost and doesn’t know how to help her through the emotional tidal waves that still come across her. He overcompensates by helping her in the “wrong” ways, which causes significant friction in their relationship. He is frustrated that treatment ended and their life is not back to normal.

When I asked the group what did work in helping them over hurdles, here are some responses:

  • Support from other caregivers who have been there
  • One combined outlet for information and guidance
  • Family getting involved to help with daily care needs and help with kids
  • Remembering that “every day is a new day”
  • Open communication about personal struggles related to caregiving
  • The chance to get away for a few hours
  • Healthy distractions – it can’t always be about cancer

One man’s cry for help was, “I need my friends and family to recognize that I need time for myself. I need them to volunteer to take over, so I can take care of myself too.” Every other person in the room nodded emphatically. Yes, they need a break! It’s exhausting; it’s draining; it’s often thankless work.

Caregiving is one of the most important ways we show love to those important to us. There’s no big paycheck, medal or award. We know our loved ones would do the same for us. It’s what we do for love.

Leading this session reinforced my belief that caregivers are the unsung heroes in the fight against cancer. It’s time to take notice of the caregivers in our lives. Thank them, give them a day off or bring them a meal. Anything makes a difference. They need to know how appreciated and loved they are too.

Caregiving-Quote

Ovarian Cancer Awareness Month: Gratitude for Cancer D-Day & Today

Melissa Bowen, Executive Director; Marcia Donziger, Founder and Chief Mission Officer; Tricia McEuen, Director of Administration

Guest Post by Marcia Donziger, our Founder and Chief Mission Officer

Did you know 1 in 71 women will be diagnosed with ovarian cancer in her lifetime?  Each September we celebrate Ovarian Cancer Month in an effort to raise awareness about the vague symptoms that precede a diagnosis.  At MyLifeLine.org, we partner with Ovarian Cancer National Alliance, Colorado Ovarian Cancer Alliance, and Sharsheret, to promote ovarian cancer education, which we believe will save lives.

But for me…. ovarian cancer means more than collaborative partnerships.  For me…. it’s personal.

As a woman diagnosed at the age of 27 with Stage IIIc ovarian cancer, I went through a dark time.  According the stats, only 22% of women live another 10 years.  Although I can’t remember what I had for breakfast yesterday, I do remember the smallest details of my Diagnosis Day (D-Day).  Today, I’m 44 and grateful for every birthday.

It was March 1997 when I was living the “normal” life of a 27-year old – newly married, just bought a house, working full-time, and traveling.  That’s when I started feeling some vague symptoms like bloating and abdominal discomfort.

I asked my doctor for antibiotics assuming I had a bladder infection.  Never in a million years would I have guessed a grapefruit-sized tumor was growing on my left ovary.

“Could it be cancer?” I asked.

“No”, my doctor said confidently. “You’re too young to have cancer.”

On March 31, 1997, I was wheeled into the pre-op room on a gurney and started on an IV.  That’s when the medical assistant came in with a clipboard.

“Sign at the bottom”, he yawned, apparently bored.  I squinted to read the small print.  “I consent it is possible…. to die…or have a hysterectomy…”

I looked up at the assistant in a panic.  DIE?  HYSTERECTOMY?  Sure, I knew there was risk in surgery to remove a benign tumor, but I hadn’t considered the possibility of a hysterectomy or death.

My doctor had told me verbatim “You’ll be back to work in a week.” These risks were never discussed.

After five hours of surgery, I woke up in the recovery room, my body uncontrollably thrashing around the gurney in pain.  I still felt as if knives were stabbing through my belly and back.

The doctor was hovering over me and matter-of-factly said, “I’m sorry.  You have Ovarian Cancer.  You’ve had a Complete Hysterectomy.”

So I lived.  But the other worst-case scenario happened, and I was devastated.  What I heard loud and clear was “Cancer. You. Can’t. Have. Children.”

My New Normal:  Ovarian Cancer spread throughout my abdomen and lymph nodes resulted in a hysterectomy.  Infertility meant experiencing intense grief and loss for the future I had dreamed of.  Six months of chemotherapy meant an endurance game of illness, and if I was lucky, recovery.

Halfway through chemo treatments, I celebrated my 28th birthday.  But there wasn’t a lot to celebrate.  My marriage was crumbling.  Cancer puts tremendous stress on a couple.  Some couples can handle it together like champs.  We didn’t.  We divorced one year from the date of my diagnosis.

There I was – 28, ravaged physically and emotionally, divorced, and dreading life in the single world, as a cancer survivor without the ability to have children.  But that’s a topic for another blog.

Ten years ago, I got married to a wonderful man.  Today my husband and I are the proud parents of twin boys – now age 8 – who were born with the help of an egg donor and surrogate mom, Katrese.  She and I became fast friends during the pregnancy, which was very healing for me.  She was even one of the founding board members of MyLifeLine.org.

Today, I feel grateful.  Grateful for that traumatic day the C-Word crashed into my life and burned up the future I’d planned.

Today, I get to rebuild my future and help MyLifeLine.org grow as the Chief Mission Officer and be an advocate on behalf of survivors and the people who love them.

Today, I get to be a Mom to 2 incredible children.

Yes, that’s right.  Today, I am grateful for the ovarian cancer diagnosis that turned my life upside down and caused me to go down a new, uncharted path.

Today, I am confident there is beauty beyond the pain and the fear.

Today, I ask you, what are you grateful for?

To learn more about ovarian cancer’s warning signs, or how to support a loved one, visit our partners:

Ovarian Cancer National Alliance

Colorado Ovarian Cancer Alliance

Sharsheret for Jewish women

 

Gratitude Campaign Badge
USC’s Gratitude Campaign

Lucky – An Ovarian Cancer Survivor’s Story

Guest Post by Marcia Donziger, our Founder and Chief Mission Officer

September is Ovarian Cancer Awareness Month, which has personal meaning for me.  Here’s why.

As a 15-year survivor of Stage IIIc ovarian cancer, I am lucky.  According the data, only 22% of women live another 10 years.  Although I can’t remember what I had for breakfast yesterday, I do remember the smallest details of my diagnosis day.

It was March 1997 when I was living the “normal” life of a 27-year old – newly married, just bought a house, working full-time, and traveling.  That’s when I started feeling some vague symptoms like bloating and abdominal discomfort.

I asked my doctor for antibiotics assuming I had a bladder infection.

Never in a million years would I have guessed a grapefruit-sized tumor was growing on my left ovary.

“Could it be cancer?” I asked.

“No”, my doctor was adamant. “You’re too young to have cancer.”

On March 31, 1997, I was wheeled into the pre-op room on a gurney and started on an IV.  That’s when the medical assistant came in with a clipboard.

“Sign at the bottom”, he yawned, apparently bored.  I squinted to read the small print.  “I consent it is possible…. to die…or have a hysterectomy…”

I looked up at the assistant in a panic.  DIE?  HYSTERECTOMY?  Sure, I knew there was risk in surgery to remove a benign tumor, but I hadn’t considered the possibility of a hysterectomy or death.

My doctor had told me verbatim “You’ll be back to work in a week.” These risks were never discussed.

After five hours of surgery, I woke up in the recovery room, my body uncontrollably thrashing around the gurney in pain.  I still felt as if knives were stabbing through my belly and back.

The doctor was hovering over me and matter-of-factly said, “I’m sorry.  You have Ovarian Cancer.  You’ve had a Complete Hysterectomy.”

So I lived.  But the other worst-case scenario happened, and I was devastated.  What I heard loud and clear was “Cancer. You. Can’t. Have. Children.”

My New Normal:  Ovarian Cancer spread throughout my abdomen and lymph nodes resulted in a hysterectomy.  Infertility meant experiencing intense grief and loss for the future I had dreamed of.  Six months of chemotherapy meant an endurance game of illness, and if I was lucky, recovery.

Halfway through chemo treatments, I celebrated my 28th birthday.  But there wasn’t a lot to celebrate.  My marriage was dying.  Cancer puts tremendous stress on a couple.  Some couples can handle it together like champs.  We didn’t.  We divorced one year from the date of my diagnosis.

There I was – 28, ravaged physically and emotionally, divorced, and not looking forward to life in the single world, as a cancer survivor without the ability to have children.  But that’s a topic for another blog.

In 2003, I remarried to a wonderful man.  Today my husband and I are the proud parents of twin boys – now age 7 – who were born with the help of an anonymous egg donor and surrogate mom, Katrese.

Katrese and I became fast friends during the pregnancy, which was very healing for me. She was even one of the founding board members of MyLifeLine.org.

Today – I feel like the definition of lucky.  I get to help MyLifeLine.org grow as the Chief Mission Officer and be an advocate on behalf of survivors and the people who love them.  I get to be a Mom to 2 incredible children.  It is the hardest job – the cliché is true – but also the best job.  Without the ovarian cancer diagnosis that started my journey, I would not be so lucky.

To learn more about ovarian cancer’s warning signs, or how to support a loved one, visit our partners:

National Ovarian Cancer Alliance:

http://www.ovariancancer.org

Colorado Ovarian Cancer Alliance:

http://www.colo-ovariancancer.org/

Sharsheret for Jewish women:

http://www.sharsheret.org/

If you feel inspired, Friday September 7th is Wear Teal Day.  Help educate the women you know about the symptoms of ovarian cancer. You could save a life.

MyLifeLine.org Staff in Teal

The Little Boy Here Who Is Bald

An inspiring moment from our Founder, Marcia Donziger, a 15 year Ovarian Cancer Survivor!

Yesterday my family went to the 4th annual “Step Up for Cancer” event on August 5th.  This fundraiser benefits 40+ cancer nonprofits in Colorado, including MyLifeLine.org.  The goal is to run all the stairs in the Dicks Sporting Goods soccer arena.  1,765 stairs.

Usually I would describe my 6-year old twins as “athletically challenged”.  Coordination and stamina do not come easy to them.  My husband, Rob, intended to hang out with them while I ran the arena with our MyLifeline team.

At the starting line, I began down the first flight.  Suddenly Jake and Ryan ran after me.  And continued stepping up and down around every single row in that professional arena.

They did not complain, and it was hot. At first, I expected they would try for a few rows before calling it quits at the balloon station.  But they were determined to finish and kept going.

Towards the finish, Jake asked “What do we get at the end?”.

Immediately I answered, “Popsicles!”, assuming he needed an extra boost of motivation.

Jake replied “No, what do YOU get at the end?”.

I said, “We are helping people who are sick.”

Jake was thoughtful.  “Like the little boy here who is bald?”.

I said, “Yes, people like him.”

Jake said, “Well, that’s why I do this too.”  And he picked up the pace.

As a parent, I sometimes get “put in my place” when my children challenge my preconceived notion of what they can do.  This was one of those times – and one of my proudest moments as a mom and cancer survivor.