Monthly Archives: September 2012

Choices That Shape Our Lives

I met Michelle Whitlock 3 years ago at a retreat for cancer survivors.  As women who had been diagnosed in our 20’s, we clicked immediately and began a friendship.  We talked about the painful treatment process – lives interrupted as young adults – and the even more painful side effects of infertility.

But mostly we discussed how when one door slams shut, another one opens.  And that is a bond in our friendship, this shared value of positive thinking and that everything will work out just how it’s supposed to.  Michelle is now a published author of an award-winning book sharing her story through cervical cancer and the choices she made.  I highly recommend – you can read more here at Amazon.

Check out the book on Amazon
Marcia Donziger
Founder/Chief Mission Officer, MyLifeLine.org

 

Choices That Shape Our Lives
By Guest Blogger Michelle L. Whitlock, Cervical Cancer Survivor and Author, How I Lost My Uterus and Found My Voice (www.howilostmyuterus.com)

The choices I made when cancer blew-up my world shaped the person I am today. Life is a series of choices. Some of these choices are easy to make; others are much harder.
Cancer of course is not a choice any of us make. It shows up on one’s door step, the unwelcomed guest. Cancer is company that just won’t leave and Cervival Cancer Authoralways over stays it’s welcome. It shakes the world of not only its chosen host but everyone around them. Sending a rippling effect into the community and leaves everyone asking questions like why me? Him? Her? What can I do? How do I support? How will I ever make all these choices in front of me?

 

This was the case for me when my life took the unwanted detour. It was Dec 2001. I was 26 and busy climbing the corporate ladder while completing my degree. I thought I had all the time to find myself and figure out those childhood thoughts of marriage and motherhood. But I was wrong. My world came to a screeching halt with my diagnosis of cervical cancer.  I was stunned!  How could I have cancer? Me?

You see, a few weeks earlier, I had gone in for my annual Pap, just like I had for the last ten years. But this time the doctor performed the, then new HPV test.  My Pap came back normal but I tested positive for high-risk HPV. My doctor called me in for a series of more tests and procedures. I didn’t understand the need, because like most women, I believed a normal Pap Test meant everything was fine, that I was fine. But I wasn’t fine, I had Stage IB1 cancer.

I’ll never forget the words my doctor said, “I’m sorry you’ll have to have a radical hysterectomy which will result in infertility.” I refused. I didn’t have children, I wasn’t married and I’d only been dating my boyfriend for 6 months.  My dreams were unraveling fast before my eyes.

Determined to fight, I kicked into Wonder Woman mode minus the hot outfit and all that spinning. I was dizzy enough from my cancer. I researched my options, got a second opinion and asked my doctor all the tough and uncomfortable questions. I learned about a new fertility sparing procedure, called the radical trachelectomy.  I choose that option; at least it offered some hope.

When friends and loved ones asked how I was coping. I put on a strong front, pretending to be made of steel. When they offered help, I denied them.But just two years later, in April 2004 only days after my boyfriend proposed, my worse fear became a reality—my cancer was back.  Suddenly I was hearing those words again, “You need a radical hysterectomy to save your life.”  I yelled out, “Not now; this is supposed to be my fairy tale ending. I can’t have cancer again.”

Desperate to preserve my fertility, I sought out another opinion.  My new doctor helped me find a reproductive endocrinologist and reluctantly agreed to give me eight weeks before my surgery. I started fertility treatment, harvested my eggs and froze 7 embryos. One week later, I got married barefoot on the beach in Jamaica. Ten days later, I was wheeled into surgery: a radical hysterectomy, partial vaginalectomy and lymph node dissection followed by 6 weeks of chemo and radiation.

I found myself at twenty-nine with a whole host of new conditions courtesy of my cancer treatments: menopause, sexual dysfunction, and radiation damage to both my bowels and hips. I had to face the reality; I would never be able to create life inside me. It was devastating both physically and emotionally, but I didn’t tell my loved ones initially. I pretended to be tough. I believed I needed to be strong for those around me. I feared they couldn’t handle me being sick or needy. I too, feared my own vulnerability.

Cancer often divides couples. It creates wedges between people and interrupts intimacy. I chose to attack this area head on. I spent my first few years of married life trying to piece my world back together with the help of my loving husband and my new perspective on life and relationships. Cancer changed my life forever, but it made me better. I emerged a stronger, more direct person, who for the first time in my life, I was comfortable being emotionally exposed and vulnerable.

Today, I am not only blessed for having battled and survived cancer but I am a better version of me. I see how all those choices made in the midst of my battle have shaped my world, a world I would not have known had cancer not touched my life. I have beautiful little girl who’s almost three years old, Riley Grier (born via gestational carrier), a loving husband and a voice I finally know how to use.

Cancer Rights Conference – California

MyLifeLine.org is pleased to partner with the Cancer Legal Resource Center on the
2012 Cancer Rights Conferences

Central Valley, CA: October 5, 2012

This free event will provide patients, survivors, caregivers, advocates, navigators, healthcare professionals, and lawyers with valuable information about cancer-related legal issues, including: employment & taking time off work, health, and disability insurance options, and understanding health care reform. Don’t miss out on these free events!
To learn more about the Conferences and to register today, visit:
www.CancerRightsConference.org

A Note from the Colorado Ovarian Cancer Alliance

A Note from the Colorado Ovarian Cancer Alliance

September is Ovarian Cancer Awareness Month!

We need more ways to battle this disease – more research, better detection tools and better treatments.  The statistics are rough, recurrence high, which is all the more reason why information about this disease is so important for all women to know.

 

My name is Pep Torres and I’m the executive director of the Colorado Ovarian Cancer Alliance.  I lost my mom to this disease 27 years ago, back when treatment was tougher than now – no anti-nausea medication or ports.  Sadly, not a lot of advances have been made in all those years.

 

Here is the good news – there is a movement happening!  A group of smart, caring and passionate people are working diligently to shift the status quo. Researchers, gynecologic oncologists, advocacy groups and survivors and their families are all working together harder than ever.  We want to catch this disease earlier so it doesn’t come back and if it does – stop recurrences at ONE and dare I say it …………….find a cure!

 

Our time is now – we are building on hope.

 

 

Please take a moment to think about these symptoms – remember them and as you speak with others remind them to know their family’s cancer history.

  • BLOATING
  • FEELING FULL QUICKLY
  • ABDOMINAL PAIN
  • FREQUENT OR URGENT URINATION

* If you or someone you know experiences these symptoms for more than 2 weeks – please see a Gynecologist.

* Does your family have any history of ovarian or breast cancer? – if yes, please talk with a genetic counselor

Pep Torres

pep (@) colo-ovariancancer.org

www.colo-ovariancancer.org

 

 

Helping Your Loved One Through the Cancer Treatment Process

 

Helping your loved one through the cancer treatment process

From across the pond in Scotland, we met Suzanne Fernando through Facebook.  Diagnosed with cervical cancer, she is now a passionate advocate for other cancer survivors.   If you have a loved one enduring cancer treatments, read below for some excellent tips she shared with us.  Thank you Suzanne!

Marcia Donziger
Founder/Chief Mission Officer, MyLifeLine.org

 

When I was going through my cancer treatments, my loved ones would come and talk to me often.  If your loved one is going through treatments, then simply acknowledging and talking about distress can help to relieve it.   Follow your friend’s lead. Just being there for them is enough sometimes.

I felt blessed during my cancer treatments having such wonderful people around me, so if my own experiences of love and support helped me, then by sharing these few simple pointers, I hope they can help you too.

-Be a sensitive, compassionate, and empathetic listener.  Talk openly and honestly.
-Don’t be afraid of silence or feel uncomfortable if there’s a lull in the conversation.
-Sharing silence can be very comforting. Your presence shows you care.
-Although people need to talk about what they are going through, equally they want to hear about the outside world and be distracted and entertained for a while.
-Respect that there will be times when he/she doesn’t want to talk and needs time to himself/herself.
-Maintain contact throughout the cancer experience through letters, cards or emails to let them know you care.
-If you have had cancer, respect that the person’s experience will be different to yours.
-Celebrate the milestones in the person’s experience, for example the halfway mark of their chemotherapy, the end of their treatment, their remission.
-Sometimes what you think is best for the person may differ from what they think. Try to ‘be with’ the person emotionally through their various feelings even if your feelings are different.
-Understand that needs change. Some people might be less willing to accept concrete help than others. If you have offered and have been refused, don’t take offense. You might try asking again a few weeks later, or you might try directly asking your friend what, exactly, it is you could do to help most.
-Be humorous and fun when appropriate and when needed but also allow for sadness – do not ignore uncomfortable topics or feelings.
-Make time for a weekly check-in phone call. Let your friend know when you will be calling.  Say that it is okay to not answer the phone.
-Tell your friend it is okay to turn down a call or a visit, and that you understand.
-When you make a commitment to help, follow through. For example, if you offer to bring a meal over on Sunday, don’t forget.
-Continue to talk to your friend as the person they were before the cancer diagnosis. Ask about interests, hobbies, and other topics not related to cancer—people going through treatment sometimes need a break from talking about cancer.
-Offer support to your friend’s support-person/caregiver. The tendency is to focus attention on the individual dealing first-hand with cancer but the needs of the partner or main support-giver can often get lost in the haze. See if there is anything you can do to make this person’s life a little easier.
-If you aren’t sure how to help, ask.

Suzanne enjoying time with family

Reflections on Childhood Cancer

Heroes


Isn’t life is full of experiences that can guide us, direct us, or attempt to destroy us?  I like to think of life as a journey on a ship of experiences.  Eight years ago, a tidal wave came crashing over the side of my ship.

It was two weeks before kindergarten and my son began to experience signs of headaches, balance issues, and fatigue without fevers.  At five years old, he was diagnosed with a highly malignant brain tumor.  Talk about a wave that stopped my ship right in its tracks with a screeching halt!  I found myself bailing out water for weeks and months.  Some days the water was a little heavier than other days.  However it was during those waking hours that I realized the true meaning of life which is the rare beauty and value each person brings to their own unique vessel.

At the age of 5, my son became my true hero.  He underwent 6 weeks of radiation and a year of chemotherapy.  During this time, he also attended kindergarten as much as he could.  We bought him lots of hats thinking he would not want to go to school bald; however, to our surprise he embraced his new look with a smile and never turned back.  He has continued to amaze us with his ability to take each new day and each new challenge head on with grace, perseverance, and most importantly with an amazing sense of humor.

During the course of the past eight years, my family has been truly blessed with an amazing, supportive family, friends, and community.  We would not be standing here today without them.

This is why organizations like MyLifeLine.org are critical. MyLifeLine.org fully understands the need for this community of support, so that families never have to experience these difficult waves alone.

MyLifeLine.org’s mission to foster connection, inspiration, and healing – through free, personal web sites – makes a huge difference in the lives of many family and friends enduring this difficult journey.  My friends and family have truly been the wind beneath our sails.

-Guest Post by  a Mother of a brain tumor survivor and pediatric oncology social worker

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