Monthly Archives: September 2013

Cancer Survivor Poem – Baseball and Sarcoma

Today’s guest post is by Lisa Bartoszek who participated in the Write to Heal webinar MyLifeLine.org co-produced with Institute for Life and Care. Lisa graciously shared her inspiring writing with us.

I grew up with a love of sports which has spanned my entire 52 year old lifetime.  Baseball is my favorite sport and so I contrasted the very favorite sport in my life with the worst situation ever faced in my life. Being diagnosed with a high-grade undifferentiated Sarcoma of my leg in August of 2012, changed so many aspects of my life.  But, it did not end my life! Currently in remission, I celebrate each day and am working hard to adjust to the “new normals” in my life.

Writing words to my Sarcoma was very meaningful to me; it was my way of challenging the presence of something so uninvited and unexplained.  Mylifeline.org has been a wonderful resource for me and I am especially grateful for their innovative offering of the Creative Writing Webinar.  Game on Sarcoma!!

Gratefully,

Lisa Bartoszek


Baseball and Sarcoma

Where did you come from, a mass of mutated, lethal cells, so unlike all others in my healthy body?

FOUL BALL……

Why did you stay and grow and destroy – form, function and dreams?

HIT BY PITCH……..

Little did you know the host you invaded; determined, vibrant, energetic Hungarian bull.

CURVEBALL!

For now, you have struck out – cut away, burned up and sent to the dugout.

DOUBLE……

Should you reenter the game, beware – I am stronger, wiser, ready for you.

TRIPLE…….

Game on if we must, Sarcoma. I am going to secure the win in this game.

VICTORY!!!

 

– Lisa Czanko Bartoszek

 

If you’re a cancer patient or caregiver looking for your own place to write blog or journal, you can sign up for a free site at MyLifeLine.org.

Turning Pain into Purpose: My Journey with Cancer

This week David Fuehrer President of CureLauncher shares his cancer story. Thanks for sharing David!

 

What has challenged you most in life?

It may come and go.  Be more difficult some days than others.

But, it is an inherent part of who you are.  “Along for the ride”, shall we say.

My biggest challenge in life has been staying strong in the face of cancer.  But, what I mean by ‘staying strong’ has changed profoundly and given me a new mission in life.

 

This is what ‘strong’ used to mean to me:

In October 2001, I won a New York State Natural Bodybuilding title.  At that moment, I felt strong.  WOW… was I wrong.  I would spend the next 10 years struggling to be strong and ultimately arrive at an entirely new definition of strength.  This is where my journey with cancer began, just four months after this picture was taken.

 

At the age of 25, I was diagnosed with testicular cancer.

At the age of 30, I was again diagnosed with testicular cancer (a different type).

 

Those were challenging years for me.  Undergoing treatment and then trying to understand my life afterward.  But, in hindsight, they were challenging because I was holding onto my old definition of strength.  I thought I could be tougher than cancer.

I believed that strength meant not showing pain…  I was still wrong.

At the age of 35, we lost my father to bladder cancer.  It was impossible not to show pain.  Our family came together for the most challenging moment of our lives.  And this is where my view of strength would be changed forever.

True STRENGTH means supporting those you love during difficult times.  It means having empathy and compassion.  True strength is an internal quality that we show when those around us need us most.  It’s true, my definition of what ‘staying strong’ means has changed profoundly.

 

This is what ‘strong’ means to me now:

 

This picture was taken our last time together before we lost my father.  The people in it are the strongest people I know.  Each of them inspire me every day.  I hope I do the same for them.

The past 12 years have reshaped my life (in more ways than I can comprehend).  Last year, I left my corporate consulting career to become a full-time advocate for people facing cancer.

My purpose is to help families know all of their treatment options.  There are 4,000 clinical trials in the U.S. that offer new treatments for those facing cancer.  This is a resource that every family should have access to.

When I sat down to write my story, I wanted to convey how cancer has created a new purpose in my life.  As I wrote (both crying and smiling along the way), I was deeply aware of the pain we all feel when facing cancer.  It is isolating and unifying.  But it is also a re-defining experience that can bring opportunity; the opportunity to support each other.

 

What has challenged you most in life?  And, what type of strength have you found in facing it?

 

David Fuehrer

Dave is President of CureLauncher.  The organization matches people to new treatments for cancer based on their unique goals and conditions.  www.curelauncher.com has translated all enrolling cancer clinical trials into easy-to-understand information.  It is the only service that gives people access to ALL enrolling cancer clinical trials.

Prior to CureLauncher, Dave was an Innovation Consultant for Pfizer, General Electric and many others.  He has helped launch new products and services across North America, Europe and China.  Dave has an MBA in Technology Management and has completed Executive Education and Harvard and MIT.

 

Work With Purpose – Thankful Thursday

Joining the MyLifeLine.org team back in November of 2012, I had one focused goal; work hard to raise money for a mission that impacts thousands of lives across the county and around the world.  I was determined to help, especially after seeing my Aunt survive breast cancer only to lose her husband to a brain tumor, my Grandfather battle cancer and suffer through radiation treatment with many side effects still present today, and my Grandmother’s life cut way too short because of cancer.  As if it were yesterday, I can remember sitting by my Grandmother’s bed in Nebraska as a little kid, listening intently to her stories, with no real understanding of cancer, or the impact it would eventually have on my family in the years to come.
I’ve been at MyLifeLine.org almost one year now.  I have learned so much from my colleagues, and even more from the members that we serve on a daily basis. Strength, courage, fortitude, persistence are just a few of the words I would use to describe those I have had the opportunity to speak with. They are an inspiration, a wake-up call to the sometimes unexamined and beautiful life that I take for granted on a daily basis.
As a Development Director for a non-profit, my job is to raise funds to support and further the mission of MyLifeLine.org through individual and corporate donations. It is nothing short of a challenge, but I am fortunate to be working for a mission and constituency that I feel so connected to and passionate about. Today, I am thankful for the impact the MyLifeLine.org members have had on me and the volunteers that continue to support our organization.

Do you work in memory of someone? Share with us in the comments.

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

How to Talk to Friends and Co-Workers About Cancer

Today’s guest blogger is Bonnie Coberly, a Certified Health Counselor at Natural Horizons Wellness Centers, an integrative cancer treatment facility.  You can follow Bonnie on Google+

After you’ve talked with family and close friends about your cancer diagnosis, you may find it helpful to share the news with other friends and co-workers. Often the way you share this information depends on a variety of factors. You may want to consider the following prior to sharing your illness:

 

1. Evaluate the depth of relationship you hold with each individual. The closer you are to that specific person, the more information you want to share with them.

2. When possible explain your condition in the simplest terms. Remember that your friends and co-workers may not know many specifics about cancer, so avoiding the using jargon or terms that they may not understand will help them truly hear.

3. Tell them upfront what you would like them to do as friends and important people in your life. Whether it’s supporting you by giving words of encouragement, helping with chores and errands, or possibly doing nothing at all, this will empower them to be able to best help you during this time.

4. Consider starting a blog or finding a website where you can journal your illness and experience. This will not only give you a means of self-expression, but it will also alleviate the work and stress of having to retell your story and update friends and coworkers on your current condition and treatment.

MyLifeLine.org for example, offers websites at zero costs to cancer patients. Patients are able to create a website, invite family members and friends, and share updates, thoughts and personal experiences. It is also a great place to coordinate volunteering efforts or ask for donations.
If you feel like engaging in a community type of environment, forums can also be great alternative source for support and information. A few (active) forums and communities that come to mind include:

5. Lend yourself to answering any questions they may have regarding your cancer or treatment, or even how this will affect your relationship with them. It’s important to keep an open mind as questions arise. Even though you know what is happening, and some questions from friends and coworkers may have seemingly obvious answers or be a silly question in your mind, to those who aren’t as educated, may be valid questions.

6. Once you’ve talked with them, refer them to visit cancer focused websites like ours. In giving them this tool, you are allowing them to do their own research in order to understand your specific type of cancer, your treatment plan, and giving them options on how they’d like to support you.

 

While it may be difficult at times to share your health news with friends and coworkers in your life, it is extremely important to your health and well-being to have them supporting you. Talking to them is the first step.

Cancer (KICK BUTT) Attitude

My cancer attitude began when I was diagnosed with Stage 2B Lobular breast cancer on September 2, 2009.  What is cancer attitude?  Cancer attitude keeps you fighting when you feel like giving up.  It keeps you laughing when you feel like crying.  It keeps you going forward when all you want to do is stop, go back and have a do-over.

With cancer attitude you fight, you cry, you laugh, you love, and you plunge ahead when you really don’t know what the outcome will be.  You trust, you care, you get mad, you hug, you rejoice in the steps forward, and you worry about the steps back.  You learn to live every single day, every moment, as if it were your last, because it might be.  Your family and friends hurt and cry and want life to go back the way it was, and then they hug, laugh, love, care, share, and keep you so focused on living, that your cancer attitude roars like a lion.  You don’t want to miss a single instant in the lives of those you love.

Cancer creates a life that is consumed by appointments, surgeries, chemo, radiation, blood draws, endless body and psychological changes (how the heck could I know that my fingernails would turn black and fall off or that every single hair on my body would disappear?!) but your cancer attitude is humble and amazed as you are surrounded by oncology nurses, doctors and volunteers who give so much of themselves to make one day better for a cancer patient.

With cancer attitude you learn to be in each day and not to look too far down the road.  You become one with those who lift you up and encourage you every single day.  You know they are fighting right alongside you.  You feel their love, prayers, hope, support, hugs – no matter if they live down the street, in another state or overseas.  You find out what you are made of and that you have more strength, determination and guts than you ever dreamed you had.  You become a warrior with serious cancer attitude.

As I celebrate 4 years since my diagnosis, I am so thankful for my wonderful caregiver husband, Steve.  He was there every step of the way with unwavering love and support, attending every doctor appointment, asking millions of questions and researching a few answers of his own, all while being scared himself.  My children, family and friends never stopped their support and encouragement – always willing to rub my feet, bring food, send cards or emails, flowers, hats, I could go on and on.  My cancer attitude is now one of strength and peace because of my outstanding support system.

That is why I LOVE working for MyLifeLine.org.  Being a part of an amazing and caring team of people who fight for cancer patients every single day is humbling and rewarding. I get to hear stories of diagnosis and treatment, I get to talk to friends and family and help them as they lend support to their loved one and I get to share MyLifeLine.org with doctors and nurses who are on the front lines of this battle. With cancer attitude, you surround yourself with a strong support system of friends and family who develop that attitude right alongside you.  I want to make sure no one ever feels alone on their cancer journey and with my cancer attitude, I am doing just that.

Tricia is the Director of Administration at MyLifeLine.org. We love her cancer attitude!