5 Blogs and 2 Websites Recommended by the Carcinoid Cancer Foundation

Blogs and personal websites are informative, inspirational, imaginative, and a wonderful way for writers to share what’s on their mind with a wide group of people.  There are several blogs and websites that the Carcinoid Cancer Foundation finds invaluable for newly diagnosed carcinoid and neuroendocrine tumor survivors and for those who have been living with these rare cancers for many years. Here are our selections.

Marlena Johnston, carcinoid cancer patient

Marlena Johnston and partner, Gary Hull

Marlena Johnston’s blog, Channeling Jackie-O, offers readers a glimpse into Marlena’s life as a carcinoid survivor; an English teacher at a high school in New Jersey; supporter of NET cancer awareness; and more. “Everybody needs a hero; for me, it’s Jacqueline Kennedy Onassis, affectionately known as Jackie-O. For as long as I can remember, when things became difficult, my mother would always tell me to think of Jackie-O and how she would handle the situation – with perfect grace. That is the purpose of this blog, to allow me to channel some of Jackie-O’s intangible grace and dignity in meeting my latest challenge: surviving carcinoid cancer.”  When Marlena was first diagnosed with carcinoid cancer of the appendix in April 2010, she went to the Carcinoid Cancer Foundation’s website and embarked on a journey to learn all she could about her rare disease.  She began with Newly Diagnosed: The Basics and then immediately went to Survival Stories.  “Seeing those smiling faces of carcinoid/NET survivors was really important for me,” says Ms. Johnston.    Read more

Blog by carcinoid cancer patient, Lucy WileyLucy Wiley, Lucysnoidblog, was diagnosed with carcinoid cancer in the ileum in 2006. Her blog, started in October 2008, covers everything from a video on how to mix black raspberry powder, used by many patients to help with carcinoid syndrome symptoms such as diarrhea;  PRRT; a form letter protesting Medicare policy; travel tips for carcinoid patients in Europe; and the nanoknife procedure for carcinoid tumors.  We recommend Lucy’s blog for an extraordinary amount of practical and varied information for carcinoid survivors. Read more

Sunny Carney is an amazing woman.  Wife, mother of 3 sons, daughter, sister, aunt, godmother, outreach The Sunny Side of Cancer book by carcinoid patient Sunny Carneyvolunteer, business owner, and a woman of extraordinary faith.  Her blog, Sunny Carney Carcinoid Cancer Fund,  chronicles all she has been through since a diagnosis of ovarian cancer 14 years ago.  A carcinoid survivor, Sunny has extraordinary support from friends, family and her community in Pennsylvania.  She recently published her first book, The “Sunny” Side of Cancer, which is available for purchase through her blog and will be on Amazon.com in January 2012.  Sunny will return to Switzerland in January 2012 for Y90 (Yittrium-90) treatment. Be sure to watch her video too (available via her blog, see link on the right-hand side).  Read more

Carcinoid cancer patient Sunny Carney

Sunny Carney with husband, Mark, and sons

Tracy Krulik was formerly a fundraiser and musician, now she describes herself as “the CEO of my health.”  Tracy Krulik, pancreatic neuroendocrine tumor survivorShe spends her time “fighting cancer, writing, teaching, practicing Pilates, putting ridiculous amounts of miles on my road bike, growing vegetables and cooking fresh, plant-based meals.”  A pancreatic NET survivor, Tracy was diagnosed in 2007 after many years of pain and illness.  Read more about her journey in her blog, I Have Cancer. And I’ve Never Felt Better.  Be sure to visit the “About Me”  section and read the articles that have been written by and about Tracy.  She’s a very gifted writer and is a contributor to MedPageToday’s KevinMD.com, social media’s leading physician voice.  Read more

Lindsey Miller recently decided to speak publicly about the fact that she has cancer.  She created a video that has since gone viral, asking out the actor Joseph Gordon-Levitt for a cup of coffee. Lindsey’s blog, i am a liver, chronicles her journey as pancreatic neuroendocrine tumor (pNET) “liver.”  She is 26 and is pursuing a master’s degree in urban planning. Lindsey was diagnosed in October 2010, just after her 25th birthday. “With cancer,” writes Lindsey, “there are generally three categories of living patients:  those in treatment, those in remission, and those who have been cancer-free for many years (survivors).  I don’t fit fully into any of these categories so I made up a new one:  I am a liver.” Her blog is especially valuable for her perspective as a patient in her 20’s.  Read more

Susan Anderson’s website, http://www.carcinoidinfo.info/, is the first carcinoid patient website, created in 1997. Susan is a carcinoid patient and NET cancer awareness advocate. Her website has a wealth of information and should be one of the first personal websites you visit. She is a longtime carcinoid and breast cancer survivor with an aggressive approach to maintaining an active lifestyle. “Lead a full and active life while LIVING with Cancer” is Susan’s motto. On her website you will find information and links to medical/drug databases, support groups, humor, books, music, prayer lists, travel, political issues, cowboy poetry, and much more. The late Monica Warner of the Carcinoid Cancer Foundation described Susan as “The Grande Dame of Carcinoid”! Members of the carcinoid/NET community frequently comment on how valuable Susan’s website has been for them when they were newly diagnosed and as they live with NET cancer throughout the years. Read more

Susan Anderson, carcinoid cancer survivor

Welcome to My Story is Kari Jones’ website. Kari is a carcinoid survivor who shares her journey very candidly in photos and a timeline, from diagnosis in 2006 at the age of 26, 7 years after showing symptoms of abdominal pain and flushing.  She also talks about her experiences  in a blog that is part of her website. Kari established the first carcinoid support group in Indiana in July 2008.  “I continue to find hope by reaching out to other carcinoid patients and getting involved in the fight against cancer,” Kari writes. “I hope that by sharing my story I will be able to inspire others into action, as well as giving hope and support to those that are out there struggling with this disease.  Kari has also produced a very moving and inspiring video, Carcinoid and NET Cancer Awareness, to help share her story and to raise awareness for this rare disease. The Carcinoid Cancer Foundationwww.carcinoid.org, is very pleased to share this video on the homepage of its website.  Read more

Kari Jones, carcinoid cancer survivor

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  • Marlena Johnston

    Thanks so much for featuring Channeling Jackie-O; being able to write about my journey is a great source of strength for me… CCF has been such a valuable support along the way. Happy Holidays!

  • You are most welcome, Marlena. Thank you for all you do for NET cancer awareness. Your blog is terrific and we feel it is an invaluable resource for the carcinoid/NET community. Wishing you joyous holidays and a wonderful New Year!

  • ” your blog is terrific and we feel it is an invaluable resource for the carinoid /NET community. ” written by The Carcinoid Cancer Foundation
    And I couldnt agree more!
    In fact , your blog is both terrific and remarkably healing .. especially during those LONG drawn out nights in the Hospitals…. thank you dear lady!
    Hi Beautiful Marlena! My name is Christina Simpkins and i am a huge fan of yours.. not only have you lifted my spirits, helped me to feel less alone (less alone regarding the whole Carcinoid nightmare) , your whimsical and soulful writing has also opened my heart and helped me heal.. thank you dear one
    I was finally diagnosed with Carcinoid Syndrome January this year ( having been misdiagnosed for over 5 years ) By February i was in Carcinoid Crisis and by Feb 21 my surgeries ( liver 70% taken out. Over a foot of small intestines taken out and several organs removed for good measure). Since then i have been in ridiculous pain 24 / 7 .
    Have had bile leak , followed by a mean bout of painful gut retching pancreatitis , stents put in and several other issues that have come up since.
    Needless to say I feel lost, tired and scared…..
    To say it has been a Hell ride would be an understatement.. it has been – by far – the worst experience of my life.. yet there have been some miracles along the way ..
    Back to YOU. Thank you for your brave willingness to share your thoughts, efforts, feelings, hopes, … your LIFE!
    You are such an inspirational Lady and this makes reading your posts that much more interesting and uplifting!
    I also wanted to confess that being a ‘recovering dyslexic’, your posts on correct grammar have been a true joy! .. i try to remember to take off my cloak of shame before i log onto your site.. it is rather humiliating when i see just how far behind i am … i swear a 6 year old could write a more effective sentence then i can……. but now i am stating the obvious !
    So, dear lady, i wish you and your loved ones AND CCF all the love and healing in the world.
    Hopefully our paths will cross.
    And may you have great health and many years of adventure and bliss and love!
    Warmly and with Aloha
    PS we have a site set up on the Caring Bridge if ever you care to visit? It is simply under my name Christina Simpkins . If you happen to have time to visit and if there is any trouble logging on please feel free to email me at simpkinsfilms@gmail.com or call/text me at 310 880 1913 .
    We have had some remarkable people, friends, family, Doctors and Nurses ( those angels with the funny shoes) who have logged on and posted .. it is a wonderful site for patients, their families/friends/ caregivers alike to connect .. simple and clean … in case you, family, friends or perhaps other Brave Carcinoid Warriors are in need of such a site.
    Again, it is called the Caring Bridge ( it was so helpful for my mom as she would post every night when coming home from the hospital. it was a way for her to connect with all our loved ones.. friends and family ) and it is a great way to share ones progress with everyone ( rather than having to email or call individually ) .. come to think of it, that is what your wonderful colorful Blog does! Duh! Oh well, perhaps for other folks coming into this crazy puzzle called Carcinoid care they can set up a temp Caring Bridge.. either way , the info is above…
    Back to YOU. Thank you Thank you Thank you ! You have brought so much joy and hope to my life.. it has been ( it STILL is) very scary and your sense of humor and tender wisdom really truly helps .
    I hope to meet you one day .. but until then i send you soooo much love and light
    PS your students are so blessed to have you as their teacher! Be well. and please, call or email anytime!