Meaghan Edelstein is one amazing mAss Kicker!  She is the Founder of Spirit Jump, a nonprofit organization designed to provide hope and comfort to people battling cancer by providing uplifting cards and inspirational gifts during this most difficult time.  She is also the author of the blog, I Kicked Cancer’s Ass.  She has been featured on: TLC’s Miami Inc, Good Morning America, South Florida CBS, and Cure Magazine.  She has spoken or is scheduled to speak at: the BlogWorld conference Panel featuring “Stand Up To Cancer”, “Alex’s Lemonade Stand”, and “Drew’s Cancer”; the Gravity Summit Panel: Social Media Meets Social Good: Cause Marketing Case Studies and Strategies; and the Cervical Cancer Awareness Rally in Washington DC.  We were very lucky to find time to ask her a few questions.

mK: Hi, Meaghan!  Thanks for spending time with us.  Why did you start Spirit Jump?

ME: When I was battling cancer I was afraid that friends and family would forget about me.   In the beginning I received cards, flowers and small gifts. I distinctly remember thinking, “this will stop, they will forget about me and go on with their lives”. The loneliness I felt was indescribable. But, the cards, gifts and visits didn’t stop. Not a day went by where I didn’t get a little something from friends, family and even strangers. These daily gestures of kindness kept me going. I looked forward to something and felt inspired by those reaching out to me.

There are so many people still battling. I want them to feel the same love, comfort and joy I experienced. While there are many amazing nonprofits working for a cure there are thousands of cancer fighters laying in hospital beds who need our support. This is why I created Spirit Jump

mK:  What/ when was your diagnosis?  How did you find out about your diagnosis?

ME: In February 2007 I was diagnosed with stage 3b cervical cancer at age 28.  In December 2006 I went for my yearly OBGYN appointment not thinking anything was wrong. I had never had an abnormal PAP, STD or irregularity of any kind. During this visit the Gynecologist told me something was seriously wrong. Of course I was shocked and when I shared this with friends and family their reactions were the same, get a second opinion. So that’s what I did.

The second doctor told me that nothing was wrong. The PAP’s came back normal and while I had bleeding they didn’t see anything irregular. But the bleeding continued and got worse. Eventually I was unable to leave the house without wearing pads, tampons were too painful to use. I continued to call my doctor and go in for visits. Each day that passed new symptoms arose and the old ones became worse, bleeding, pain and nausea to name a few.  But my doctor just brushed me off saying things like, “if you were 60 I would say you have cervical cancer but your just too young” and “there’s too much blood for me to see anything come back another day”.

Eventually I went for a 3rd opinion. This doctor told me I was suffering from PTSD and that it was all in my head. He prescribed sleeping pills and Seroquel (this is a medication that is given to people with chemical imbalances). At this point I had completed stopped sleeping due to the pain I was experiencing. After about 1 1/2 weeks without any sleep at all I brought myself to the ER.

A CT scan revealed I had a very large tumor that crushed my ureters causing my left kidney to rip open. It was now February and the doctors beleive my kidney was ripped for at least several weeks.  My prognosis was poor and while in Florida I was told treatment would be futile. However, I was flown to Dana Farber Cancer Institute in Boston Massachusettes to start treatments.

Kairol Rosenthal is a tenacious mAss Kicker! She is a thyroid cancer patient, healthcare blogger, and author.  Her book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s (Wiley 2009) is the culmination of her five years of research and interviews with professionals and patients in the young adult cancer community. She has written on the subject for The New York Times and been interviewed on Fresh Air with Terry Gross, Newsweek, BBC Radio and other international media. Her blog everythingchangesbook.com is a hub for conversation in the cancer community.  We were able to track her down and ask her a few questions.

mK:  Why did you write Everything Changes?

KR: During treatment, I was saturated with images of cancer patients as heros.  The ‘hero story’ so did not match my own experience of coping with cancer, and made me feel isolated rather than inspired. I toted a notebook everywhere and journaled prolifically about my own cancer experience, but I wanted to write a book in which I was the provocateur, coaxing from other cancer patients raw and candid stories that I had never seen or heard written about elsewhere.

What’s it like to be a cancer patient as a new mom, or someone right out of college with massive student loans, or someone who lives in a remote rural area, or is a drug addict? I hear enough stories about cancer patients running marathons or climbing Kilimanjaro. I wanted to know how everyday people surmount the monumental task of laying their head on the pillow at night when they feel scared and lonely.  I learned some pretty amazing lessons by traveling around the country, plunking myself down in the living rooms of perfect strangers and hearing what they had to say.

mK:  What/ when was your diagnosis?  How did you find out about your diagnosis?

KR: Almost nine years ago I was diagnosed with papillary carcinoma, aka thyroid cancer.  It was a total fluke that on my first ever visit to a chiropractor, she noticed a lump on my neck, yanked me off her table, and sent me packing to the hospital.  Like many young adults, however, it still took me seven months to receive an accurate diagnosis.  Doctors didn’t believe my lump was anything more than a swollen gland when in fact I had 19 malignant tumors in my neck.

mK:  That is a common theme.  What were your symptoms?

KR: Thyroid cancer is most often asymptomatic.  A patient’s thyroid gland can be riddled with cancer, as mine was, and still function pretty normally.

mK: Who is your hero or heroes?

KR: Terry Gross is my hero.  She is masterful at getting people to spill their guts and reveal intimate parts of their lives on air.

mK: What motivates you?

AJ Ali is a non-survivor “featured mAss Kicker”, but a mAss Kicker none the less. Loved ones play a crucial role in “mAss Kicking”. AJ is leading a very interesting life! After playing on the US Air Force Soccer Team, he became an accomplished writer, musician, and entrepreneur. AJ and his wife Jane created the non-profit Marathon of Miracles, a Christian cancer outreach and wellness organization offering hope for the mind, body and spirit. They teamed up again to create Survivor Celebration, a social media site geared towards all cancer patients. AJ also recently authored the book, The True Champion’s 30-Day Challenge. We were fortunate to track AJ down and ask him a few questions.

mK: Why did you start survivor celebration?

AA: I started it as a way of fighting back in a positive way. I think attitude plays a big part in one’s ability to fight cancer or any other challenge. So, to survive is one thing, but to celebrate takes it to a different level. Celebrate life, celebrate friendships, celebrate every day that we’re given.

mK: What/ when was Jane’s diagnosis? How did she find out about her diagnosis?

AA: Jane was diagnosed with stage two breast cancer. She was working out and felt a lump. It was April 2^nd, 2005. When I came into the house and she told me I said “Come on, April Fools was yesterday.” Our world changed at that moment. I’ll never forget it.

mK: What were her symptoms?

AA: Nothing, really. She was lucky to have found the lump so early.

mK: Wow! Detecting things early is so important! We need people to look up to. Who is your hero or heroes?

AA: I have many heroes. Some of them include Michael Jordan, Tiger Woods, Hancock (the messed up guy Will Smith played in the movie) and Jesus, not necessarily in that order. My brother Abbey, who died in 1998 of Hodgkins Lymphoma, was my biggest hero of all. He was a brave warrior. He fought a good fight.

mK: Hi Selma! Thanks for taking the time to hangout with us! What/when was your initial diagnosis?
SS: I was diagnosed with breast cancer at age 28 in 1983. 20 years later during an elective surgery to remove my ovaries because of my BRCA positive mutation, it was discovered that I already had ovarian cancer.

mK: Whoa! What were your symptoms the first time around?
SS: At 27 I found a breast lump. I also experienced deep chest pain because as it turned out, the tumor was imbedded in my rib cage. My diagnosis was delayed by four months because it was difficult to find a surgeon willing to do a biopsy.

mK: It’s sad that Doctors still don’t take young adults seriously. Why did you start Vital Options? How did it go international?
SS: I realized how hard I had to work at being taken seriously as a potential cancer patient. My mother has just died of ovarian cancer and so it was a particularly difficult time. I knew that there had to be a lot more young adults who like me– delayed in diagnosis for not being taken seriously as a potential cancer patient. Lack of information and awareness on behalf of young adults with cancer, coupled with the unique needs and psychosocial issues young adults with cancer face, led me to found Vital Options as the very first young adult cancer organization back in 1983. My mission on behalf of young adults with cancer was also healing for me. It allowed me to bring meaning to my cancer experience, to outsmart it in a way, to make cancer work for me. The goal: Put young adults with cancer on the map!

Vital Options expanded into cancer communications with the launch of The Group Room® cancer talk radio show 14 years ago. In 2000, broadcast and other collaborative opportunities expanded our reach to Europe, enabling us to work directly with cancer centers, oncology opinion leaders, patients and the advocacy community on a global level, leading Vital Options to become a registered European charity.