Monthly Archives: November 2014

Support MyLifeLine.org on Giving Tuesday

MyLifeLine.org wishes you all a Happy Thanksgiving filled with family and friends. We believe connecting with the people you love is an important part of dealing with a cancer diagnosis, which is why we provide free patient websites where it’s easy to connect.

This year, help us continue providing our services at no cost to patients, by participating in Giving Tuesday on December 2, 2014. After Black Friday and Cyber Monday, Giving Tuesday is a global day dedicated to giving back. Nonprofits, large corporations, retailers and more will come together on Giving Tuesday – a movement to celebrate giving and kick-off the holiday giving season.

Our goal for Giving Tuesday is to raise $2,600 – enough to cover the cost of 20 patient websites for one year. We’ve set up a Giving Tuesday crowd funding campaign to help us accomplish our goal. If you participate, you could get a meeting with former NBA coach of the year and cancer survivor George Karl, or a printable card saying you made a donation in someone’s honor.

If you are unable to donate, please visit our crowd funding page and share it on Twitter, Facebook or your MyLifeLine.org page. Your support of our organization is support for all people affected by cancer.

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6 Things I Wish I’d Known About Cancer

This week’s blog post is by Robyn Stoller from CancerHawk. An inspirational blogger, patient advocate and “cancer matchmaker,” Robyn Stoller created Cancerhawk.com to guide people through the cancer experience and help them avoid the frustration she and her late husband went through while navigating his disease. Her relentless patient advocacy has helped to uncover hundreds of resources – ranging from financial and travel assistance to incredible survivorship and support networks to cutting-edge research that might benefit a particular person’s cancer.  She now shares this information and advice with others through Cancerhawk.com, connecting cancer patients and caregivers to a wealth of resources and organizations that offer assistance to anyone touched by cancer.  “You can’t Google something if you don’t know what you are searching,” she says. Robyn has also co-founded a nonprofit research organization, Peregrine Cancer Foundation.  You can connect with Robyn on Twitter and Facebook.

Wrapping your head around the fact that you or a loved one has cancer is no easy task. After my 46-year-old husband was diagnosed with a very rare and aggressive cancer in 2009, we were in a state of shock and paralyzed with fear. Nevertheless, we had to research treatment options, meet with doctors, schedule multiple surgeries and start chemotherapy all in a matter of days. Talk about overwhelming! Below are six things I wish we had known at the beginning of our cancer journey:

  1. Always, always get a second opinion. No ifs, ands or buts about it: When it comes to cancer, two heads are better than one. Second opinions will either confirm what you’ve already been told or present different options to weigh. Regardless, second opinions can help to reduce the chance of misdiagnosis and provide greater peace of mind. If the two opinions you’ve received differ, get a third one. Remember, it is a patient’s prerogative to speak with as many professionals as he or she chooses. If you’ve been diagnosed with a rare cancer, I urge you to also seek recommendations from doctors who specialize in that particular cancer.
  2. Be choosey. Being best friends with your doctor is not required. You don’t even have to like your doctor. But you do have to trust their care and feel comfortable talking to them about anything related to your health. If you don’t, find a new doctor immediately. For us, it was also important that our doctor be both a realist and an optimist. Eventually, we left our first oncologist for these reasons.
  3. Talk to your doctor about molecular profiling.Two people with the same cancer can and do respond differently to the exact same treatment regimens. Why? Because each person’s cancer is unique. Identifying unique genes, proteins and other molecules (called cancer biomarkers) can provide information about how your particular cancer functions and can be used to help identify potential treatment options. Molecular profiling is especially key if your doctor is choosing between multiple recommended treatments, or if your cancer is particularly aggressive or rare or has limited treatment options, or if your first-line treatment isn’t working. To learn more, visit MyCancer.com and IsMyCancerDifferent.com. Both sites have loads of helpful information on personalizing cancer treatments.
  4. Visit a dentist prior to starting cancer treatments. It’s important to see a dentist who really understands cancer before beginning treatment or as soon after diagnosis as possible. Chemotherapy, radiation therapy and immunosuppressive treatments like bone marrow transplants and stem cell transplants can exacerbate existing dental and oral problems, as well as create new painful and potentially dangerous ones like mouth sores, ulcers, infections, bleeding, etc. Dentists who are knowledgeable about cancer and its effects on oral health can help minimize these risks before they pose serious problems.
  5. Understand the goal of your cancer treatment. Make no assumptions when it comes to your health or treatment plan. Not all treatments for cancer are given with the intent to cure. Treatment can also be given to help prevent disease recurrence, to minimize symptoms of disease, or to simply prolong survival. Knowing the goal of your particular cancer treatment and the potential risks associated with that treatment will enable you to make the most informed decisions possible about your care.
  6. If you don’t know where to turn for help, talk to an oncology navigator. Until recently, I had no idea there existed professionals who can help a cancer patient navigate their way through this diagnosis. Oncology navigators are skilled in helping cancer patients overcome obstacles to treatment (financial challenges, insurance and employment issues, managing daily life, evaluating treatment options, etc.). They work to help patients get the best care possible. Where can you find an oncology navigator? Some hospitals and private oncology practices have an oncology navigator on staff. Another option is the LIVESTRONG Cancer Navigation Center, which provides free one-on-one support to anyone touched by cancer, regardless of age or type of cancer. The National Coalition of Oncology Nurse Navigators can also help connect patients to a free navigator in their area. Navigators are very helpful in uncovering resources that you may not know about otherwise.

Although I have no regrets in how we managed Alan’s care, I do wish we had fully understood the extent of what we were dealing with at the beginning of our cancer journey. I wish we had understood the importance of the six tips I wrote about above.

What do wish you had known at the beginning of your cancer journey?cancer-tips

A Cancer Caregiver’s Story

In honor of National Family Caregiver Month, Erma shares her story as a cancer caregiver for her husband, Shelby. Erma and Shelby documented their experiences during Shelby’s colorectal cancer treatment on MyLifeLine.org.

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Erma documented her experience as a cancer caregiver for her husband Shelby on MyLifeLine.org.

When Erma’s husband Shelby was diagnosed with stage IV colorectal cancer, saying they were both stunned would be an understatement.

Shelby was an active and healthy individual who had regular physicals and checkups. They thought they were doing everything right when their lives were turned upside down.

Erma recalled that it felt very personal at the beginning of Shelby’s diagnosis, “You start out in the beginning like, ‘Why me? Why me, Lord. Why did God pick on me? That has all changed now. We’ve worked through that. It’s not like life picked on you. Life just happened.”

It took Erma some time to get to the point of acceptance of what she and Shelby were enduring. She had to take on new roles and responsibilities after her husband’s cancer diagnosis and Erma was left in charge of their dog, house, vehicles, insurance, driving, making sure bills were paid and all of her husband’s appointments were booked while he focused on his cancer diagnosis.

In addition to all her other responsibilities, she also had to update friends and family about Shelby’s condition. Each of these new tasks that came with her husband’s diagnosis began to overwhelm Erma and she realized she needed help.

“I realized shortly, within the first few months of his chemo treatment, that I somehow had to shake the feeling that was still a hold of me because my husband was totally zoning out,” Erma reflected.

Erma began seeing a counselor through her husband’s cancer center. She worked through her struggles with Shelby’s diagnosis and her new responsibilities as a caregiver and came to terms with what she was facing.

During a wait for one of her husband’s many doctor appointments, Erma noticed a postcard about MyLifeLine.org sitting next to her. Erma picked up the card, put it in her purse and went online within the next couple days to give it a try. She was overwhelmed with updating friends and family through email of Shelby’s condition. Today, she sees MyLifeLine.org as an important part of their cancer journey.

“I almost look at MyLifeLine.org as part of his treatment. Whatever happens to him, MyLifeLine.org gets updated,” Erma said. “I felt more connected. I felt the support. I felt the love from everyone we knew. It changed my whole outlook, truly.”

Erma has some advice for other caregivers.

“You as an individual must have a support system. Secondly, you must learn how to use it. My support system was there from the beginning. I just didn’t think I needed it. People would ask me how I was doing and I would always say ‘I’m good, I’m fine, just a little tired,’ when in reality I was drowning,” Erma recalled.

Once Erma started leaning on her support system and using it she began to understand what she was up against. The support has been constant for Erma, and she said it has truly made a difference.

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MyLifeLine.org and Cancer Today Magazine Announce Partnership

MyLifeLine.org and Cancer Today magazine are pleased to announce a new partnership that will continue each organization’s efforts of supporting people affected by cancer.

Cancer Today magazine is published quarterly by the American Association for Cancer Research and is an authoritative resource for cancer patients, survivors and their family members and friends. In every issue, Cancer Today offers information and inspiration to help readers face the challenges of diagnosis, treatment, survivorship and caregiving.

A strong support network can help cancer patients and caregivers navigate the emotional challenges that come with a cancer diagnosis. MyLifeLine.org helps to facilitate and engage that support network.

Cancer Today and MyLifeLine.org are working together to let patients, survivors and caregivers know how each organization can provide resources and mutual support for people affected by cancer. To learn more about Cancer Today, please visit their website or sign up for their free monthly e-newsletter, where one can view cancer resources, articles, highlights from new Cancer Today issues and web exclusives.

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