One Writer’s Incredible Story of Hope, Beauty, and Glioblastoma
Patricia McMorrow | 08.15.17
The thing about terminal cancer is that sometimes you don’t feel sick.
“I feel, weirdly, completely healthy,” Caroline Wright of Seattle said, 6 months after receiving a diagnosis of glioblastoma, a very aggressive brain cancer, in February 2017.
Feeling Strangely Fine
“It’s very strange, and part of the reason I am so fascinated, on a daily basis, with the topic of my cancer,” Caroline said. “It’s not something being put in front of me all the time. I forget that I have terminal cancer.”
Just 32 years old, with a husband, two children under the age of 5, a thriving career as a food writer, editor cook and stylist, and fresh off a fully funded Kickstarter campaign to create a children’s book, Caroline had been experiencing headaches, fogginess, and disorientation for a few weeks before her diagnosis.
Shocking Diagnosis
A week after an MRI revealed a mass, Caroline underwent surgery. A week after that, she was diagnosed with brain cancer.
Caroline’s CaringBridge website began with profound and prolific updates. “I needed a place to dump all this information, so people would stop calling and texting me,” Caroline said. “CaringBridge rose up to meet me.”
Tactical and Emotional
Caroline said the tenor of her Journal has naturally morphed from tactical details surrounding brain cancer surgery and treatment to a wide-ranging, soul-searching, emotional-but-not-self-pitying litany of topics. Such as …
- What it’s like to attend “Old Lady Yoga”(empowering)
- “Things I Don’t Give a S— About Anymore” (her eyebrows, the existence of the Kardashians, being thin, the tan she gets from her Keen shoes).
Living in the Super-Present
Glioblastoma patients generally are told they won’t live much longer than a year after diagnosis. But 6 months in, Caroline plans to surpass that, with no signs of her cancer present at this time.
“I am negotiating this very strange space, what it means to be a mom and a super-present and creative person who is always thinking about what’s next,” Caroline said. This is what led her to create another Kickstarter, this time to turn her CaringBridge posts into an heirloom-quality memoir for her children, family and friends.
Parenting Loophole
“When it comes to the fact that I have two little children, my 4 year old, Henry, might remember me before my illness, but my Theodore won’t,” Caroline said. “In fact, he might not remember me at all. I’m writing all of this stuff so they know, if I do in fact die soon, that I fought like hell, that this is what it looked like, and what I was thinking … that I didn’t want to go.”
And she’s embracing a different view on talking about fear and death.
“There is this idea in our society that we can’t talk about fear and death without it looking like you are someone as giving up,” she said, describing writing her way through this as a “weird parenting loophole.”
Mom vs. Patient
“The mom thing to do is to plan if I die. How would my kids be taken care of emotionally? I’m doing what I can to participate in that. People have been giving me s— about that death part of it, but I don’t see there’s any other way to do it,” she said.
And of course, it’s not so much a conversation about death as it is about truly living.
“This doesn’t feel like dying, but rather my humanity,” she said. “The whole, full-fledged view as a mom and writer and person is being called upon and I’m getting this opportunity at this place to write it. I’m immortalizing it and documenting it, to pass it on to my kids.”
The Space in Between
And if she lives?
Caroline said, “I get to pull this book off the shelf and read it and think, ‘Man, that was so hard.’ Regardless, my kids will have this personal and intimate view of their mom during the craziest, scariest part of her life, and the part of my life, where I’m still negotiating the space between aggressive cancer and being realistic about what that could mean, but also being honest and creative in that space.”
True Bravery
When Caroline learned she had the mass, she called her Swiss brother, Jonas, for support. Crying and railing against “being this mom in a hospital gown,” Jonas offered a different perspective. “Jonas said, ‘You’re showing them what a superhero is like, what true bravery is, and you get to do that.’ It’s not a conscious thing, but it does flip everything on its head.”
Caroline is beginning to compile her CaringBridge posts into the book, but she plans to write through her first prognostic year, then begin production.
Beautiful Book
She has a small team in place to carry out her wishes, should she not survive to see the project through, and on her Kickstarter page, she outlined what she would approve of in terms of its sale or profit if the desire is there.
Regardless, her wise, honest words will be lovingly bound and covered, emblazoned on thick paper, enumerated with foil-stamping (for the limited edition), with the features book lovers appreciate—and that her sons will especially treasure, the heft of their mother’s well-lived life, in her own words.
Silver Linings Person
In the meantime, she is living with her characteristic buoyant outlook. Free of her usual cookbook deadlines, she’s experimenting with an anti-inflammatory diet in her kitchen, sourcing ingredients at the farmer’s market, writing daily, and spending time with her children.
“It’s a pretty beautiful place, and it’s a quiet, introspective place, and these structures [of family and friends and CaringBridge] have held me up to feel these things, which is great,” she said. “Crazy, scary, and great. I’m a silver linings person. I’m sort of an unstoppable person.”
A Donation to CaringBridge
The Francis Family Foundation will match your donation to CaringBridge, dollar for dollar, up to $30,000. CaringBridge is a nonprofit, dependent on your support to remain online, private, protected and ad-free. Donate Dec. 30 or Dec. 31 to make your gift count twice!
I’m looking for resource to talk to my 5 yo and stumble on to your book. My 40 yo husband was diagnosed with GBM in May 2017. Thank you.
Thanks, Caroline, for your openness about your circumstances. I just lost my best friend to this after many, many months, most of them as good as you have described. He beat the predictions of his imminent demise by a LOT. So happy that you are doing the same. After his initial surgery, which was 100% successful, we discussed at great length what his strategy should be. Notwithstanding the fact that we are both “sophisticates”, we agreed on this — “Keep going until you can’t.” He did that.
I’m already a donor to Caring Bridge, but I’m upping it because your initiative has moved me. May the Lord continue to bless you.
Dearest Caroline= What a beautiful story from a woman of true bravery & complete faith in God. You be proud of yourself.I’m the youngest of 4 children who lost our Dad in April of 2015 of the same brain cancer. He was 92. He was a writer also.You continue your writings & live each day to the fullest!!
Hello Caroline,
I am a librarian in St. Paul, Minnesota. We just received a copy of your book Lasting Love. It is beautiful. A beautiful story for your sons and a gift for other families experiencing similar situations. I’m wishing you the best. I’m going to display the book in our children’s room now. Thank you.
My daughter could have written this! You both have such a talent for writing. Although her cancer is not diagnosed as terminal, she has a rare pediatric cancer….rhabdomyosarcoma. She, like you is young (32 yrs) with 2 little boys. She was diagnosed in 2015 while she was 6 weeks pregnant. I can’t begin to tell you what she’s been through and how it has turned our world upside down. She is very optimistic and positive even in the worst of the worst. I think the 2 of you have a lot in common. Read her journey at #Jennsjourney. Best wishes to you…sounds like you’re a super hero like my daughter! !!!
Dear Caroline,
My husband, Tom, was diagnosed with the same cancer last fall. He had the tumor removed (97%), went through the “traditional chemo and radiation”. Because of his age (75), we have chosen to not pursue the above treatment further, but have chosen to try cbd/thc treatment instead. We have read and researched quite extensively, and were able to speak with a couple in Santa Cruz, Ca. who have been following this path with good results. We are hopeful that this will give us more time, and are certain that what time we are given will be of better quality.
If you would like to speak with us, we are very willing to share what we have discovered. It can be very overwhelming to enter this rabbit hole. Whatever journey you chose, we know you will travel it with the love of your family and friends. Please let us know if we can be of help.
Caroline,
My brother was diagnosed with a grade IV GBM Jan 2017. He has surgery,radiation and has just completed his 12 chemo treatments. So far all his MRI’s are clear! He just started wearing the Optun cap yesterday. Stay strong for your family!
Caroline, I too am thinking about writing a book as my brother was recently diagnosed with GBM and his is the worse possible type and usually doesn’t respond to treatment but I am hoping that the tests could be wrong and relying on God and his power at the moment. I have a peace that goes beyond the norm and yet at the same time dread the thought of losing my younger brother!! He is taking treatments and so far is doing well. I hope to bring him to my home after treatments and put him on a very healthy diet that can only help. Limited carbs and sugar that tend to feed cancers!! I can hope that perhaps he will have a bit more time to enjoy life as he has always been a workaholic and never took time to do just that. I will keep you in our prayers and ask you do the same for Fred. Thank You
Caroline, you are an inspiration for us all – superhero mom!!! Our 3 year old grandson Chase Ivester was just diagnosed last Tuesday with nuroblastoma of thoracic area. I am volunteering my time to administrate the CaringBridge page. You have given me great insight on how to present Chase’s story to the world. You have our prayers and well wishes for your family and a cure for you! I have great anticipation to read your book. Thank you for shining the light! Dennis Ivester, Braselton, GA
my 18 year old daughter was diagnosed 5months ago with GBM????…thanks for sharing-
My Aunt was just diagnosed with GBM and just got home from her second surgery in two weeks. Bless you and your family – keep up the fight! You are an inspiration. Thank you for sharing your story.
oh, my word! I just found this sight by accident. My daughter, Alesha Richmond recently discovered
she has breast cancer and is on Caring Bridge also. and the step-father she spoke of is and was my husband, Bo Kaminski. He had Glioblastoma also. I so wish that he and I could have known about this place then. I will be praying for you and because of how this sight is helping my daughter and you and so many others I plan on giving a donation on your behalf next week. My best to you and your family. J. Kaminski
Caroline; Bravo for you! Living every moment of every day. As Survivor, I know about days not feeling sick. I know you will keep fighting and never give up. Sending you Love, Hugs, Support and Prayers.
Stay strong Caroline. I’m on the front lines with you in the fight against GBM. I’m a grade IV and so far one year…staying positive is a critical ingredient and you seem to have that in your favor.
Good luck
What a beautiful and inspiring story. Thanks for sharing. Norma Ashby, Great Falls, Mt.
As a Mom of a GBM son .. how is your Mom doing?
You are a wonderful inspiration to your sons . Your book will show how much you love them and will comfort them throughout their life. You are a brave and strong person and I hope my prayers will help you through your journey, a long one, I pray.
Reading this makes me so proud of you for expressing your self in such beautiful and meaningful words for me and everyone else (including your great and wonderful boys) to read. My prayers and many other prayers are going your way.
Caroline so brave and strong…prayer help and miracles do happen.
I have seen miracles happen…with our son-in-law… and we are still praying.
Sending prayers and hugs ????
Judy Brumbaugh Blanchester, Ohio
Caroline!!! We love you! Don’t even care that I don’t know you! You are living LIVING LIVING…and your spirit is so inspiring and infectious! I can’t wait to read more!!! Have had many friends on the Caring Bridge and i am a donor as well! Love to you from me and my husband Stephen in Los Angeles! Michael
I applaude the beautiful soul that Caroline is. So wise and thoughtful at such a young age. All of us can learn from her. Being able to see beyond ourselves, and seeing the “ silver lining” in place of the alternative.
I love your self-description as “a silver linings person” and you certainly are. With great admiration for you and uplifting prayers for “an unstoppable person.”
Bless you, Caroline, for having the presence of mind and ability to set this up for your children. My husband was diagnosed Jan. 3, 2017 with Glioblastoma as well. He is a singer-songwriter and the smartest, funniest person I have ever known. Sadly, it has affected his memory and focus to the point he seems like he has Alzheimer’s. We have had a very rough year but his spirit and mine are strong. Caring Bridge has been a huge help to us as well. Best wishes to you and your family!
My thoughts and prayers are with you
Thanks dear Caroline for being so courageous. The etymology of courageous ..”cour” part-is heart – in French- couer; in Spanish= Corazon; in Latin =cor. Because you are so courageous, you “put heart into everyone… (En-courage ==put heart into)
Blessings dear Caroline. I will add you to my ever-growing length of wonderful “courageous” people I pray for every night. BLESSINGS! Sister Lois Wedl, OSB Saint Benedict’s Monastery in St. Joseph, Minnesota
Can’t wait to read Kick Start. Your story, as I’be just seen, is awfully beautiful & your story is life more than death..so I’m sure your book will be productive & meaningful to many forever. Best of everything, every minute, everyday.
My heart goes out to you, Caroline. May God bless you and your family always.
Wow. This is a wonderful story!
Dear Caroline, I too have a GBM-4 (caringbridge/jeffglathe). I admire your spunk and don’t give a sh$! Attitude.
Keep it up and out live all expectations!!!
Remember that strength is found in the mind, not always in the body.
???? (Spock)
✌️ (To you and your family)
????-cancer (sorry not kid appropriate) – my opinion!
God can heal anyone of anything. He also has a plan in store for all of us. We do not understand now, but later we all will. I wish you well and have faith in your journey until you reach that destination.
Awesome, story i love it.
Thanks for sharing this with us.
I am subscribing your blog for daily updates.
It’s a most inspiring story. I congratulate her on her recovery.
Praying for you today that God would continue to sustain you and heal you and that you would know his perfect peace . Martha
you are one brave lady..
I am very sick also
but I cry a lot and find it hard to do anything I don’t give a S// about those stupid things either I just want to breathe Thanks, Ginny
Absolutely love you! Such an inspiration to someone who doesn’t always grab at the positive…thank you for that…I could say so much more, but I believe you’ve said it all…????
What a beautiful outlook on life. I would love to buy and to read your book.
You inspired me this morning, Caroline. I will pray for you and your sweet family. Thank you for sharing your story – and your attitude.
I hope things go well for you and your family. God performs miracles. We have to believe, have faith. I will keep you and your family in my prayers.
Caroline my daughter went through this, she was 31 when diagnosed, she gave it a good fight made it 6 years. Five of those years she was fine. She lived! You fight honey give it the fight of your life .Let those boys remember their strong loving loving mommie. Take Care
I am soooooooooo impressed with you! You are amazing and your plan is fantastical!!! Your boys will cherish your life story forever.
If it is released to the public I will also read it! Thank you for sharing your life with us.
Peace, Prayers and love,
Claudia Callahan
Your life is a blessing to so many people and I do hope and pray that you may be blessed with a full recovery. The odds are not great we know, but I wish you many terrific days ahead. You are quite an inspiration. I too, am recovering from a small external cancer which is hopefully healed completely, but we know each day is precious! You look beautiful! God bless you and yours!!
Don’t forget the eissac tea……loving thoughts and prayers for the superhero!
My sone Alex has the same type of cancer. It will be 6
months in 09/ 17/17. Since he had his first surgery.
He is also autistic and we just found out he had two blood clots in his heart he is a fighter and still strong and growing keep up the good work live adventurous and prosperous as much as you can my son’s only 7 years old.
You are a super hero, not everyone gets to show their super powers to their children. I mean all Moms have eyes in the back of their head, but most Moms don’t really know the lesson of living in the moment and making the most of that moment. I hope someone you know makes you a cape.
My husband just was diagnosed in June, 2017. He is like Nelson Ochs – a grandfather with much he wants to do yet,
Wishing you and your family the best in this journey, think the will and the attitude have much to do with the time you have. Enjoy each day.
Caroline, I am glad to hear how you are forging ahead. I also have Gleo Blastoma . I will not forget when I was old this and all the negatives all the doctors had told me. I have grand kids and I was not ready for this. I have allot I want to do yet. Much like you I refused to give up and I am still here 20 months later. It has not been easy all the treatments and I find the worst is the many drugs needed and what they do to me.
I wish you the best of luck with your battle. I believe attitude means everything. I try to each day as it comes and pretend cancer is not part of me. The thoughts never go away but I will try to do whatever I want and am able to do. My concern is with my wife my care giver who works so hard to make sure all is well with me. I will be praying for you and your family.