Monthly Archives: May 2011

Marcia, ovarian cancer survivor

The History Behind MyLifeLine.org Cancer Foundation

By Marcia Donziger, our Founder and Executive Director

I was 27 and thought I had a bladder infection.  Turned out to be a tumor on my right ovary.

At first, my gynecologist was not concerned.

“Could it be cancer?” I worried.

“No”, she replied, “You’re too young to have cancer.”

I was married and trying to get pregnant at the time, so I scheduled surgery immediately to get it over with.  The doctor assured me the worst that could happen is I’d lose one ovary, and still be able to have children.  She was confident the tumor was benign.

On surgery day, I was wheeled into the pre-op room.  That’s when the medical assistant approached me with a legal form to sign, agreeing to the potential of having a hysterectomy.  My doctor and I never discussed this.

Five hours later, the surgery was over, and I was in the recovery room.  My body thrashed around in pain, and I still felt knives stabbing throughout my stomach and back.

That’s when my doctor broke the news. “I’m sorry, but you have Ovarian Cancer.  We had to do a complete Hysterectomy.”

Through the pain, I heard, “You have cancer.  You can’t have children.”

The irony was that my doctor was six months pregnant.  Her belly at my eye level felt like multiple stabs in the heart.

Stage 3c Ovarian Cancer spread throughout my abdomen.  Infertility.  Followed by a bowel obstruction.  And six months of chemotherapy.

One of things I struggled with most was keeping friends and family up-to-date with what was going on.  I felt the daily burden of not communicating effectively with those I loved who were so concerned.

In 2007, I founded MyLifeLine.org to help all cancer patients and caregivers easily communicate with friends and family during the treatment process.  MyLifeLine.org Cancer Foundation believes a strong support community is critical for cancer patients.  We provide free, personal websites to cancer patients and caregivers to easily connect with family and friends, because no patient should ever feel alone. Learn more at www.mylifeline.org.

I would love to hear how an experience you’ve had with cancer inspired you to do something in the fight against cancer. Please share your comments.

MyLifeLine.org is Mobile! Now Cancer Patients can Access it from Anywhere!

Today we announce the first version of the mobile optimized website. If you have a smart phone, you can view some of the main features from your phone. With a mobile optimized version, we hope that patients and caregivers can access thier website on the go and make updates even if they don’t have access to a computer.

My Updates: Patients and Caregivers can add new My Updates and friends and family can view and comment on the udpates.

Guest Messages: Friends and family can leave inspiring messages  and the patient can read all the loving messages without having to get on their computer to catch up.

Helping Calendar: Patients and caregivers can add and edit events on the Helping Calendar. As well, as friends and family can sign up to help.

Photo Gallery: The photo gallery is viewable from a smartphone, but with this version, you won’t be able to upload a photo directly to the photo gallery.

 See below for a few screen shots from the mobile version. Tell someone you know with cancer about MyLifeLine.org today.

MyLifeLine.org Ribbon

Cancer, Working, and Legal Issues

MyLifeLine.org is pleased to partner with Cancer and Careers on the first ever National Conference on Work & Cancer

Friday, June 17th, 2011 in New York City

This FREE conference will explore the complexities working people face as they try to balance their cancer treatment and recovery with employment. Topics will include Job Search, Legal Issues, Health Insurance, Working During Treatment, and more. CEUs will be available for oncology nurses and social workers!

For more details or to register, please visit:

 http://www.cancerandcareers.org/conference

 

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MyLifeLine.org is also pleased to partner with the Cancer Legal Resource Center on the 2011 Cancer Rights Conference

 Friday, June 24, 2011 in Chicago, IL

This free event will provide patients, survivors, caregivers, advocates, navigators, and healthcare professionals with valuable information about cancer-related legal issues, including: employment & taking time off work, health, disability and life insurance options, access to health care, insurance navigation and appeals, understanding health care reform, cancer community resources, genetics & the law, legislative advocacy, and education rights of children and young adults with cancer. Don’t miss out on this free event!

To learn more about the Conference and to register today, visit:

http://www.CancerRightsConference.org

Busy Past Few Weeks for MyLifeLine.org

Here’s a recap of everything we’ve been up to the past few weeks.

Colorado Cancer Summit:

Christi attended this Summit to meet with colleagues from around the state to discuss cancer control and quality of life issues in Colorado. Networking and collaborating sum up the theme of the Cancer Summit.

National Association of Cancer Center Development Officers/Public Affairs and Marketing Network Conference:

MyLifeLine.org exhibited at this conference. Kim and Beth met with various cancer centers to help spread the word about the great service we can provide their patients.

 Oncology Nursing Society Congress:

Marcia and Christi went to Boston for the Oncology Nursing Society Congress. This is always a great place for us to exhibit because we meet so many great nurses that want to share our service with their patients.

Association of Oncology Social Work Conference:

Thanks to Nancy and Ken who went to St. Louis to host our table. At this conference we met a lot of great social workers who are excited to share our service with their patients.

Lastly…… 

This past Saturday was Jockeys, Juleps, and Jazz, our annual fundraiser. It was a huge success with over 475 people (100 more people than last year)! Thanks to George Karl and Kim Van Deraa for their support of our event! Also, a huge thanks to our event chairs Amy and Carol, as well as the event committee that made sure the event was a success!

 We’ll be posting photos and video in the near future.

Metastatic Melanoma/Renal Cell Carcinoma Patients- $100 for Half an Hour of Your Time

If you have or know someone with Stage III/Stage IV Metastatic Melanoma or Stage III/Stage IV Renal Cell Carcinoma keep reading!

MJRC is in the process of interviewing patients with Stage III and Stage IV Metastatic Melanoma and Stage III and Stage IV Renal Cell Carcinoma on behalf of a client in the pharmaceutical industry.   

  • The goal of the study is to understand how patients learn about their treatment options and what factors influence them to choose the treatment options that are right for them.
  • MJRC is inviting patients to take part in a 30-45 minute telephone interview (depending upon the length of their answers) that will incorporate the use of the internet to view images in real time. Participants will not need to download any software, nor will they enter any information about themselves.)
  • Participants will need to be in front of a computer with an active internet connection AND have access to a (preferably) wired telephone.(versus cell phone) to take part in the research.  For these reasons, we prefer that patients not be in a treatment facility.
  • In consideration of their time, each patient will receive a payment of $100. This is on a first come first serve basis. MJRC also has eligibility requirements for the study, so contact them to see if you qualify. The study is only open for two weeks, so respond as soon as possible.  
  •  The research, being done among Cancer patients across the country, will gather opinions and insights about the process of selecting a treatment.
  • This research is not being done for the purpose of selling anything to the people interviewed.  There will be no selling, no follow-up calls, or mailed offers, as a result of participating in the research.
  • Interviews will be scheduled with patients, at your convenience, once you send your contact information to the attention of Matt Roberts at the following address: mjrc_research_project@yahoo.com. Be sure to let them know you heard about the study from MyLifeLine.org. Please cc support@mylifeline.org on the email as well.  
  • All contact information, as well as all personal information, will be kept strictly confidential and will not be shared with either the study sponsor or the public.  The anonymity of each MyLifeline.org patient will be strictly maintained at all times.

If you have any questions about the study, email mjrc_research_project@yahoo.com