Keep Calm and Carry On: Your Cancer Prognosis 6 I’M in Remission
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THE ELEPHANT IN THE ROOM IS CANCER. TEA IS THE RELIEF CONVERSATION PROVIDES. JUNE 2019 Steve Giallourakis, two-time cancer P. 10 survivor MY NAME IS STEVE I’M A DRUG ADDICTPLUS THE STORY OF HOW MY CANCER LED TO ADDICTION THE FRECKLE P. 6 I’M IN EFFECT P. 4 REMISSION! HOW I OWNED P. 20 KEEP CANCER P. 18 CALM ABOUT TRIAGE CANCER Triage Cancer is a national, nonprofit organization that provides education on the practical and legal issues that may impact individuals diagnosed with cancer and their caregivers, through events, materials, and resources. Chapel Hill, NC Houston, TX TRIAGE CANCER CONFERENCES Saturday Saturday Who should attend? Sept. 14 Sept. 28 Individuals diagnosed with cancer, caregivers, health care professionals, & advocates will learn about: Register at: TriageCancer.org/Conferences Understanding health insurance, picking a health insurance plan, and appealing denials Accessing clinical trials How to work through treatment or take time off Applying for disability insurance PRESENTING SPONSORS Estate planning and other important documents Managing medical bills, finances, and getting financial help Becoming an empowered patient and advocate Dealing with how to grow after trauma FREE: sessions, lunch, gift bags, prizes, & more! Travel grants available! BENEFACTOR FREE CEUS: Triage Cancer is accredited as a provider of continuing nursing education by the American Nurses Credentialing SUPPORTING SPONSORS Center's Commission on Accreditation. Attendees are eligible for up to 6 CEUs. This program is Approved by the National Association of Social Workers (Approval # 886731806Ͳ2840) for 6 continuing education contact hours. This program has been approved for continuing legal education. PARTNERS: AACR, BMT Infonet, Cancer and Careers, CancerCare, Cancer Today, Cervivor, Cutaneous Lymphoma Foundation, Dr. Susan Love Research Foundation, FORCE, Imerman Angels, International Waldenstrom's Macroglobulinemia Foundation, Lacuna Loft, Lungevity, Lymphoma Research Foundation, Metastatic Breast Cancer Alliance, National Bone Marrow Transplant Link, National Marrow Donor Program of Be The Match, National Ovarian Cancer CoalitionͲ Illinois Chapter, Ovarian Cancer Research Alliance, Pancreatic Cancer Action Network, Patient Empowerment Network, The Samfund, Sharsheret, Susan G. Komen, Testicular Cancer Foundation, Thyroid Cancer Survivors’ Association, Twisted Pink, Untire, Young Survival Coalition, & ZERO—The End of Prostate Cancer LETTER FROM THE PRESIDENT Conversation Learning to Be a Brother and Not a Coach Alysse. Phil and Alysse have had or be poked on an hourly basis for tests. We their first child, Alana. We both have don’t know what it is like to have a scan next moved to different parts of Ohio after week to see if the “C” word is back, relapse and living together in Lakewood, Ohio. be staring death in the face yet again. BEING A BIG BROTHER and trying not to We sat there throughout the night having 10 years is a long time. But 10 years for coach up your little sibling is one of the hardest our adult beverages, laughing and making someone that had a BMT isn’t just a long time, things to do. Well at least if you have a brother fun of each other until it was time for us to it’s a second chance at life. who is smarter than you when it comes to all head home. As a brother of a cancer patient and survivor science and medicine topics. Let’s be honest I can honestly say it was one of the happier the emotional toll that it takes on us is not here, if it isn’t sports related my little brother moments I’ve seen Steve in a long time. He just the same as that of the actual patient but it’s probably has me beat. O and he doesn’t have started a new job and seem to be in love with it. still one that people forget about. Phil and I a college degree. Does that matter? have finally learned to not get angry at Steve WHAT IS THE “NORM”? when he does things that aren’t of the norm. FLASHBACK On my drive home I began to think and reflect But again, what the hell is the norm? Where were you on March 27th, 2009? I was on what Steve has done in the past 10 years. having reconstructive elbow surgery and that For context - Steve is now 28 years old and BEING A BROTHER AND NOT A wasn’t the most important part of that day. a two-time cancer survivor. COACH My younger brother Steve was having his In our society I feel we judge each other We need to forget what the norm is or what bone marrow transplant (BMT). based on our accomplishments, career choices, society thinks a 28-year-old should be doing Prior to understanding how the bone mar- partner choices and whether or not we have with their life and be able to accept that there row was going to be administered to Steve, I kids. Let’s not forget having a college degree. isn’t a norm. thought it was going to be some intense sur- Steve was 18 when he had his BMT and he As difficult as it is for a brother watching gery. I was amazed that it was being admin- is still in college, still trying to get a full-time their loved one go through the challenges of istered as an IV drip. Technology is amazing. job, not married and doesn’t have any kids living with cancer, we need to be supportive (that we know about). and not try to tell him or her what to do all PRESENT Does that mean that Steve is unaccom- the time. On Wednesday, March 27th, 2019. Steve, Phil plished compared to Phil and I, who are both Rather than getting upset at them we need (older brother) and I found ourselves at our married both with college degrees and Phil to just be there, sit with them, have a drink and friend’s bar called Mars Bar in Lakewood, has a kid? Absolutely not. learn how to just shut up and be supportive. Ohio celebrating with some family and friends What Steve has gone through by staring I challenge my fellow family members and Steve’s 10thanniversary since his BMT. death in the face (twice) like other cancer sur- friends of those fighting cancer to do the same. The look on all three of our faces said it all; vivors, we forget as the emotional toll it does This has been one of the hardest things to relaxed and happy. to an individual and we need to remember admit but it is important to just be supportive Steve looked at Phil and I and said, “I can’t that what patients go through is something rather than trying to coach Steve up. decide if it feels like forever ago or like it hap- that most people will never go through until Survivorship is a journey and I hope those pened yesterday.” we’re old. Like Steve and many others that are reading this month’s issue come to under- I couldn’t agree more with Steve’s state- still trying to “find the right path” we forget stand that just because treatments are over ment to us. that it’s OK just to live life and have fun as the journey is just getting started. We all went on reminiscing about what we normal human being. all have done in the past three years. I married Those of us that haven’t lived with cancer ➥ NICK GIALLOURAKIS, PRESIDENT AND CO- my wife Camilla and Phil married his wife do not realize what it is like to live in a bubble FOUNDER OF ELEPHANTS AND TEA JOIN THE IF YOU WOULD YOU LIKE TO SUBMIT A STORY TO BE PUBLISHED IN CONVERSATION ELEPHANTS AND TEA, PLEASE CONTACT [email protected] ELEPHANTSANDTEA.COM JUNE 2019 1 June 2019 VOLUME 1, ISSUE 2 THE ELEPHANT IN THE ROOM IS CANCER. TEA IS THE RELIEF THE CONVERSATION PROVIDES. 10 THE STORY OF HOW MY CANCER LED TO ADDICTION Conversations Emotional Support Sexuality 1 LEARNING TO BE A 4 THE FRECKLE EFFECT 14 IT USED TO FEEL SO GOOD. BROTHER AND NOT HERE IS HOW I OWNED CANCER NOW IT FEELS SO BAD A COACH 18 Jen's Corner 24 HOW RACE CAN AFFECT Survivorship KEEP CALM AND CARRY ON: YOUR CANCER PROGNOSIS 6 I’M IN REMISSION... 20 NOW WHAT? LIVING WITH SCANXIETY 28 MOM’S 6 TIPS: STAYING WELL DURING CANCER 8 THE SECOND WIND: 22 LIFE IS HARD ENOUGH. TREATMENT SURVIVING CANCER FRIENDS CAN MAKE THE 17 MOVING CONNECTION ONLINE JOURNEY SO MUCH BETTER. ELEPHANTSANDTEA.COM 2 JUNE 2019 www.ElephantsAndTea.com THE ELEPHANT IN THE ROOM IS CANCER. TEA IS THE RELIEF THE CONVERSATION PROVIDES. CEO and Co-Founder Angie Giallourakis What’s Online President and Co-Founder Nick Giallourakis Art Direction CHECK OUT OUR WEBSITE FOR MORE CONTENT. FOLLOW ELEPHANTS AND CaveDwellerStudio.com WE UPDATE NEW STORIES WEEKLY FROM PATIENTS, TEA ON SOCIAL MEDIA! Graphic Design Consultant SURVIVORS AND CAREGIVERS. SOME OF OUR LATEST Joey Terry STORIES INCLUDE: Social Media Strategist Alexia Montgomery Twitter @ElephantsTea Elephants and Tea Contributors IT IS OK TO ALLOW Jennifer Anand YOURSELF TO FEEL Mallory Casperson By Urska Kosir Champaigne Corfee Marloe Esch Instagram Steve Giallourakis @ elephantsandteamagazine Ericka Jane Mitch Lortz Marjorie A. 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