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When life gives you lemons, make lemonade. When life gives you cancer…

Reposted from the Cancer Support Community Blog:

Today’s guest blogger is Maayan Cohen, CEO and Founder of Hello Doctor™, a free mobile app that empowers people to control their health and organize their own medical records. Below is Maayan’s story that tells how she and the Hello Doctor team are revolutionizing and simplifying the patient experience.   

Maayan Cohen, CEO, Hello Doctor

Maayan Cohen, CEO, Hello Doctor

4 years ago, my former boyfriend started having bad headaches. They usually started around the evening time, until one day he woke up with a headache — that’s when I knew that something was seriously wrong. I dragged him to the emergency room and 3 hours later, the sky fell on us. A scan revealed he had a brain tumor and must undergo immediate surgery. That morning marked the beginning of 2 excruciating years of fighting cancer that included surgeries, chemotherapy, lab tests, radiations, second opinions and countless visits to doctors who are part of disparate medical networks whose technology systems don’t talk with each other.

HD_LogoEach doctor we saw gave us a net of about 10 minutes face time. Beyond the uncertainty and fear, the worst part of these meetings was trying to explain his medical condition by pulling out the relevant Medical Records that the doctor wanted to see out of my “medical binder”. I knew that if I could not find the right document at the right time it would affect his treatment and in this case — it can even cost us his life.

This story has a couple of happy endings. First, my former boyfriend went into permanent remission, he is doing great today and we are still good friends. The second is Hello Doctor. The frustrations of my experience with the health care system inspired me to quit my job and start Hello Doctor, which is intended to help millions of people who are dealing with the same frustration that I had to deal with. Today, Hello Doctor’s team has 5 members — all went through a similar experience with different medical conditions — bowel disease, breast cancer, ALS and pregnancy monitoring. We have all been there, and we decided to devote our career to helping people feel less confused and more in control when talking to their doctors.

Hello Doctor stores your medical records on your tablet or smartphone

Hello Doctor stores your medical records on your tablet or smartphone

Hello Doctor is a free mobile app that empowers people to control their health. We started with an iPad app that helps people to manage and understand their medical records. It allows you to easily aggregate all of your medical records (paper or digital) on your tablet and get to any one of them in literally just 2 taps. It allows you to share your medical records with your doctor and take notes on the medical records themselves — so that you won’t forget what bothered you and resolve it in time. It’s that simple and it’s that useful, especially in real time — when you are facing your doctor.

Download Hello Doctor to your smartphone or tablet today!

Download Hello Doctor to your smartphone or tablet today!

A few weeks ago we found out that we are already helping people. Ilene, a 60 year old cancer survivor sent us an amazing thank you letter. “A simple flu shot meant that I have to take my 2 medical binders with me to the doctor as he doesn’t have access to all of my records. Your app is invaluable”. This is exactly what we dreamed of when we started this project and we need your help in spreading the word about Hello Doctor. You can start by downloading and trying it yourself — take control over your health now. Manage your medical records with Hello Doctor.

 

Volunteer Spotlight: Art Connolly

ArtConnollyArt Connolly is a three-time cancer survivor, having been diagnosed with prostate cancer in 1997, thyroid cancer in 2006, and adenocarcinoma in 2008. He had to undergo surgery for all three occurrences and went through six months of  chemotherapy for the adenocarcinoma. During a visit to his oncologist, he noticed a brochure for the Cancer Support Community (then called The Wellness Community) in the waiting room. Art and his wife Paula both attended regular support groups through the end of 2010.

“I believe the Cancer Support Community has helped me grow a lot,” says Art. “Being in a support group has made me a better listener.  My wife and I have made several very good friends, as I like to put it, ‘The kind of friendships that used to happen only in foxholes in wartime.'”

After “graduating” from regular support group attendance, Art began meeting with a group of other CscVvsb “alumni” and helping out at various events. This group of “alumni” morphed into the Speaker’s Bureau – people who had benefited from CscVvsb’s programs and wanted to share their story with community groups to raise awareness of cancer support resources. As a dedicated Speaker’s Bureau member, Art has represented CscVvsb at speaking engagements for many different groups and organizations. He has also volunteered his time to represent CscVvsb at Health Fairs, and has helped fellow cancer survivors as a Buddy Book volunteer – offering to provide one-on-one support to someone with the same diagnosis as him.

“I wanted to give back to an organization that was such a wonderful help to me and my wife during my most recent cancer journey,” says Art, who adds that his favorite aspect of volunteering is “the positive reaction from people we speak with who had no idea such a support system was available.”

Recently retired after a career in aerospace engineering and management, Art lives in West Hills with his wife, Paula. We want to thank Art for being an advocate for the Cancer Support Community.

 

Participant Profile: Michele Blum

In honor of National Brain Tumor Awareness Month, we would like to introduce Michele Blum, a seven-year glioblastoma survivor and a participant in the Brain Tumor Networking Group and other programs provided by CscVvsb. Thank you for sharing your story, Michele!

MicheleBlumSeven years ago, Michele Blum was expecting her first child, excited about becoming a parent, and looking forward to continuing her teaching career after her maternity leave. Everything changed when Michele was diagnosed with a glioblastoma (an aggressive and highly malignant type of brain tumor). Instead of enjoying her last few months of pregnancy, Michele had to undergo emergency brain surgery followed by grueling radiation treatments. The baby was delivered more than a month early so Michele could begin chemotherapy. “Since then, it has felt like a glass has shattered into a thousand pieces and we are still trying to put all those pieces back together,” says Michele.

Fortunately, Michele’s daughter Brianna did very well and is now a healthy and active seven-year-old. In the years since Michele’s diagnosis, the Cancer Support Community Valley/Ventura/Santa Barbara has helped Michele manage the anxiety, stress, and physical symptoms arising from the glioblastoma and its treatment.

The Relaxation and Guided Imagery program facilitated by Paula Getty-Shearer at CscVvsb gave Michele the tools she needed to manage her anxiety. “Paula is unbelievably sensational,” says Michele. “To this day I would recommend her to anyone.”

Another program that helped Michele was an educational seminar on oral health and cancer. Michele had been getting a lot of cavities and had no idea why. The upcoming seminar caught her eye and she decided to check it out. “I basically left the seminar jumping for joy,” she recalls. “I learned that you need a team of doctors because there are so many different aspects before, during, and after your treatment. People don’t really know that until someone tells them.”

The Brain Tumor Networking Group is another CscVvsb program that Michele attends regularly. “It’s so good for me. It makes me feel like I’m not alone, like there are other people who I can relate to,” says Michele.

Michele went through another challenge that many women in treatment can relate to: hair loss. “That was extremely difficult for me,” she says. “My hair was what identified me. It was very bright, long, curly hair.” When Michele was initially diagnosed, her friends and family all said they would shave their heads in solidarity. As grateful as Michele was, it did not make losing her hair easier. The brain surgery had left a dent in her head, which showed up once her hair was gone, making Michele not even want to see herself in the mirror. “As time went on I was able to grasp that it was just hair. My hair slowly grew back, but in certain areas it would never grow back.” Last year, Michele decided to supplement with hair extensions. “It has been a big challenge and very expensive, but it makes me feel like more of who I was,” she says.

Although it’s been a rough road since the diagnosis that changed everything seven years ago, Michele has never stopped working to overcome her health challenges, and chooses to focus on the positives in her life. Through her immense inner strength, her family, the Cancer Support Community, and her doctors, Michele has formed her own support system to help her make the most out of life.

When I Think of My Father: Henry’s Story

A remarkable young man named Henry gave a speech at our recent Evening of Hope Gala that made quite an impact. Henry was kind enough to let us post it here so everyone could see his story. Thank you, Henry!

Henry with John 1When I think of my father, I imagine his massive arms.  Arms that used to swoop me up and float me high in the clouds so I felt like I was flying.  Arms that taught me how to cast a fishing line with a flick of the wrist.  Arms that steadied my bike when I first learned to ride and comforted me when I fell off and ate dirt. Surprisingly my father’s arms- that seemed as large as Popeye’s in size, were no match for my super-powers when we wrestled and played dinosaur and I won.

This all changed the day my mom told me my dad had acute leukemia. I was supposed to go to my friend’s birthday party but we had to skip it and go to the hospital.   It was on that day, that I sat next to my dad while the doctors inserted a line in my father’s arm to receive chemo.  They explained that he would have to live in the hospital, go through chemo, radiation and a bone marrow transplant.  I remember being told to stay hopeful, but what I really felt was chaos and confusion– wishing that I wasn’t contemplating cancer but instead eating cake with my friends.  Wishing I had friends or teachers who I could talk to about being scared of losing my father.   For the next six months, my experience with cancer was a realization that I did not know what was going to happen.  There were amazing moments – when Matt Kemp visited my father in the hospital and left me a gift basket.  Fun moments- when our friends Karen and Julie decorated my father’s hospital room and we held a New Year’s party.  Moments filled with play- when my dad and I went bowling in a mock bowling alley they made for us in a hallway at City of Hope.  There were moments of happiness- when my dad taught me to quilt in his hospital room so that we could work on a project together…. to the moments of fear and not knowing if he was going to survive because he was so weak he could barely lift his arm to hug me or say my name.  And then there was the moment to which there is no words- the day I lost my father to leukemia after his seven months battle with cancer.

I remember very little about that day, except that it was a Tuesday and I asked my grandparents to take me to attend Kid’s Circle at The Cancer Support Community.  I walked in and Joyce hugged me and I shared what had happened and I ate a snack.

Henry with John 2Since the beginning of my father’s illness, I had been going to Kid’s Circle each week. In Kid’s Circle everyone has a family member with cancer so we all feel the same and safe to talk about it with each other.  It was so weird the first day but after a while I became a part of the community. Little did I know the first month I attended Kid Circle that it would later become the highlight of my week.  It’s a place for me to share my fears, my feelings, and ask my questions.  Equally important, it is a place that allows me to be happy and play, when everyone around me was grieving.  In Kid’s Circle we first meet and do a check-in to discuss what’s happening to us.  Kids share the emotions and highlights of the past week.  Afterwards, we work on projects.  Each week is a different project.  Some of my favorite projects have included making a journal of questions, creating a talking stick, and designing hand puppets.  Often we have special visitors such as the Spring Chickens Improv Group, a dance instructor, the Knotty Knitters, or Karaoke.  At the conclusion of Kid’s Circle, we form a circle and hold hands and take a moment to breathe and relax.  Then we choose a topic and each say a word that comes to mind.  When I think about the Cancer Support Community, the word that comes to my mind is ‘friendship’.

It’s been two and a half years now since I started attending Kid’s Circle weekly. When I think back on my experience with my father having leukemia, I realize that neither my father nor any adult in my life promised me that he would be ok, yet they’ve helped me believe and realize that I can be ok.  Kid’s Circle is special to me because they have shown me that although the loss of my father is tragic, I can once again grow to be hopeful and happy in my life through the love and support of my mother, sister, family, friends, and the Cancer Support Community. That it ok to once again enjoy life.   This is something my father asked of me before he died- to live life to the fullest each and every day. To grow to appreciate and once again experience the beauty, love, and happiness each day brings.  Thank you Joyce and Kid’s Circle for helping me keep this important promise to my Dad.

 

To make a donation help fund our support groups (like Kids Circle) for people affected by cancer, click here