Shaker Heights is my home. My people are here. John, Sophie, Grant, Rocky (he’s a person too, really). Our friends. My colleagues. My kitchen. My bed. My life is here.
Istanbul was a great adventure…enough of one to see me through 6 months of brutal cancer treatments for the majority of days I lived there. It was a temporary home, made all the better by John’s company most of the time, Turkish friends, and American friends who came to visit and help me get through chemo. The place has a special magic. The people are uniformly kind and gracious. The language, culture, history, and food were fun to learn and experience. I threw myself into all of it. I had a life there, but it was meant to be a short-term assignment to get me to a more stable place. Mission accomplished. Did I get to remission as we’d hoped? No. For some reason, like many women with difficult ovarian cancer, chemotherapy isn’t all-powerful and healing. Did I return safer and healthier than I left? Well, I was in hospice then, so, definitely yes. In Turkey and when I returned, I was able to eat. I didn’t have pain. I could walk for miles. For anyone who questions whether we in the US have something to learn from other ways of approaching cancer, my case shouts a loud, clear yes.
The treatments in Chicago are not working as well as the treatments in Istanbul did. We know because the cancer marker is rising again, even though I’ve had 3 chemo treatments since we returned to the US on May 18th. Heeding US standard of care advice as an experiment, we agreed to back off some of the drugs I was given in Turkey to protect my bone marrow. Even though chemo given in an integrative way is tolerable, bone marrow keeps the score with increasing difficulty producing the red and white blood cells we need to survive. It was a bet. We lost. Badly. So far.
It’s now clear there was more wisdom in the Turkish protocol, which the Block Center has agreed to follow more carefully and as completely as possible (full-body hyperthermia is not legal in the US…for good reasons? Nah, but it was brutal. I hope it’s not crucial.). Will it stabilize my marker/condition? We hope so. Can I chemo my way into remission here or anywhere? Not clear. How long would that take? Not clear. Would I have gotten to remission by now if I’d stayed in Turkey? Would I achieve remission in another 6 months if I went back? The math doesn’t support those ideas. Am I sorry I came home?
Definitely not.
My life is here.
I have less energy. I’m exhausted by this fight, and it is a fight…with ongoing poking, prodding, cutting (I finally got the port), and poisoning, at this point with no definitive end in sight. My body is keeping the score, and we’re doing our best to handicap the outcomes with nutrition, supplements, etc., but we don’t have control over the endgame.
What I do have control over…what remains a choice…is how I live my life, even now. I might have questioned the decision to continue to receive treatment at a point like this before it was me, now. It’s incredible how we adjust to new normals, so long as living seems incrementally better than dying.
Although I was buying time and living an adventure in Turkey, my life is here. The work that remains for me is here. We’re working to get another book out. As parents, we have adult kids – although 18 and 20 are not that old – to admire and help prepare for their own adventures in college and study abroad, and more. My joy is here. Cooking and eating meals together. Snuggling with the dog, Helping one kid with her chemistry, and the other order dorm supplies. Relaxing with John over the latest show in the evening (have you seen The Bear? Highly recommended). I’ve traded the hills of Istanbul for the treelined streets of our block in Shaker, sometimes with friends when I’m feeling up to it. Our life here is interrupted every 2 weeks with 3 days of treatment in Chicago, but this is our life. It’s better than participating via facetime. I know. I’ve done it both ways.
And there are conversations we can have in person that would have been hard…maybe impossible…virtually. Conversations I wouldn’t have thought to have without facing mortality. A chance to talk about the most important things in life, which we put off, sometimes until it’s too late. What I hope for John, Sophie, and Grant. That they live, no matter what. That we find fun and joy together for as long as we can. That they continue with their plans with no regrets. Go to college. Go to Spain. I want what I’ve always wanted: what’s best for them. I’ve made clear that their adventures, fun, and work in the world bring me more joy than anything they can do for me here. Their bodies are healthy. Their worlds are big. I believe I’ll be able to participate in some way, no matter what. I love them completely. I’m not afraid of dying, but I do hope to manage the pain better than the last time I was given over to hospice. Grant thinks I should try meth or ______ (insert powerful legal drugs that make being in a body more bearable). I can’t disagree. To be clear, I feel I’ve been training for the next phases of life and will feel pretty ripped off if I don’t get to live them. Watching our kids become who they will be. Traveling with John. Dancing at weddings. Holding grandbabies while cooking for their new parents…
If you interact with my kids and their friends, you can help us by reinforcing these messages. They are loved. They should live in full color, now and always. John too. Let’s not forget him. If we’ve learned anything in all of this, it’s that life is precious and short (hopefully not too short). Living in full color is the only reasonable choice.
I shouldn’t have to choose between life and living, don’t you think? Thank goodness we went to Turkey in the first place where I was put on a protocol that worked and probably would not have been considered in the US. Why not? Well, I’ve written plenty about this…which comes down, time and again, to a failure of courage, imagination, and empathy for patients. For this reason, I write. For this reason, I’m pulling it all into a new book. That story must be told and told again so that it is heard and might make a difference someday for someone else.
As for my health, let’s just hope we can get back on track.
And resume life with the promise of living, as abnormal and imperfect as it is these days.
I will continue to pray that living becomes easier and the markers go down.
I ‘m still waiting for our yoga class to start again!
🙏🙏🙏❤️❤️❤️
I was going to contact you…
Back in the winter, I put July 10 on the calendar for us to go on a a walk! If you want to do it and you are home, I am available. Otherwise, I will walk and pray for you.
Much love to you!
How smart of us
Will message you
Saw pic of you in Amy’s post
Loved seeing you so healthy and more beautiful than ever
Jackie, you are phenomenal. It feels cruel that through such incredible suffering you are sharing the most profound lessons on living and loving. I pray that the love that clearly surrounds you nurtures you and gives you some of the joy that you so richly deserve. Sending you one additional huge loving hug across the waters.
Wonderful to hear from you, Aileen. Thank you 🙏
I savor your every word and all your wisdom and I can’t wait to read the book. With so much love, Lila
Xoxo
Jackie, I admire your outlook. Yes, Life is imperfect and I’m happy that you are here with your family, I pray that you are able to “get back on track” with your health.If anyone can do it, I believe it’s you.
And a new book, fantastic.
If you ever feel like that shot of tequila, give me a call.
sending hugs and healing thoughts.
jo
Xoxo
jackie
so hopeful you find some peace and balance. excited that you are working on another book. with love, lauren
Love you too
Jackie,
I welcome your wise and brave words. You continue to be in my prayers and sending more healing energy.
Thank you 🙏
Love, hugs and good thoughts.
Thank you xo
Sending all the love in the world! xo
Love you, Laura
I’m so happy that you are back here in your home territory! Thanks for continually giving us the ability to savor every moment as we certainly know you are with John and the kids. Continued prayers and peace for you Jackie as you walk with so many of us overshadowing you with our prayer and energy.
Fr Brian
Thank you, Father Brian 🙏
Love your challenge to all of us to live in FULL COLOR!!! Sending light in all the colors of the rainbow refracted in the most beautiful way!!
Xoxo
Jackie, my big regret is that I have yet to be able to meet you in person. Your attitude, strength, perspective and wisdom have been and continues to be inspiring. Miracles do happen. Wolverines win their fights. I send my prayers for continued strength. THANK YOU!
Thank you, Bob. I so look forward to meeting you too. Go blue
Jackie- I am so grateful for your courage, imagination, empathy & wisdom. For the gift of writing right to the heart of whatever it is you need the world to know. I pray for your physical relief of pain and for your markers to go down so you don’t need to choose between life and living.
Thank you 🙏
Jackie—you have so much love and support here in Cleveland. Much love to you.
Thank you, Kate
You are a brave woman. You have a very supportive family. I encourage you to keep fighting. Good luck & God Bless!
Thx
Jackie , your strength and grace are beyond what I could ever imagine in myself. I pray for you and John and the children and continue to wish you much love.
You never know…hopefully you won’t have to find out
Xo
I’m so grateful that you keep writing. I know there isn’t much I can lift off your shoulders, but the urge is there — to make any one thing easier.
I learn from you and am inspired by you. I love you and am grateful for the way you share with the rest of us.
xo
Thank you so much, Shari
Xoxo
Jackie… Thank you so much for the update… It’s is an honor to follow your journey… I am so glad you’re writing that next book… Blessings, MaryAnn
Thank you 🙏
Jackie – I’m praying for you and sending best wishes. Much love always. – Laurie
Xoxo
You are simply an amazing woman playing out a bad hand with courage, grace, dignity and love. I’m am so sorry for your suffering. At the same time I’m so grateful for all you are sharing in a way that is so heart-opening. You embody courage, resilience and hope. Praying for that remission!
Thanks so much
You continue to live a life of faith, grace, and abundant determination as a model for those of us easily frustrated by small hurdles. Thank you, God bless you and your family.
🙏❤️
Our prayers remain constant as do a never ending stream of well wishes and positive thoughts. I admire and appreciate you sharing your journey. I believe!
Thank you 🙏
You are truly an inspiration! I think of you, John, Sophie and Grant everyday. Your authenticity, grace and writings are a gift to us all. I hope you can feel all the love that surrounds you and your family. See you soon. Love, Maggie
Xoxoxo
Jackie, I am so glad you are home, with your loved ones, friends and neighbors nearby to support you. Even the dog – and perhaps, especially the dog!
What an impact you are having on all of us. Your warm eloquence, your powerhouse intellect, your thoughtfulness about the impact on your family… we are all so lucky to know you, and to be inspired by your battle to fully regain your health.
I am sending my most genuine and heartfelt wishes that your health takes a very sharp turn for the better. If love can heal, then you surely have some very powerful medicine courtesy of all those who cherish you.
All my love,
Samara
Thank you
Xoxoxo
You are one phenomenal woman! Thanks for inspiring and pushing for more wholistic treatment.
🙏❤️🙏❤️
You are my hero! You have always lived in color and I have no doubt that you will keep doing so…technicolor, even. And I’m thrilled about your new book. Let me know if I can help, even it it’s only to sharpen your pencils.
Love you Jen
Dear Jackie,
My thoughts and prayers are with you during this grueling fight. Blessings to you and your family.
🙏🏻
🙏
Jackie, few share as much of their experience with cancer, the treatments, the physicality, the emotions, the relationships, the fragility, the strength, the journey. You continue to be so open, so thoughtful, so self aware, so generous and always empathetic as you have share. It is a gift to all of us, one of inclusion and one of life lessons. The book will be precious for me and very helpful, I know. Thank you, thank you, thank you.
You know that I am with you, with John, Sophie and Grant. I pray for them. I pray for you – that there be promising outcomes, that your pain and discomfort diminish, that you remain surrounded by love and calm, that you be fulfilled.
One should not have to choose, not at all.
Lots of love.
❤️❤️❤️🙏🙏🙏
You are in my prayers as always!
🙏
Let me know how I can pre order that book! Your journey is hard and beautiful, your family is fantastic, your writing (and thinking) sublime.
Aw thank you
Your journey has inspired us and forced us to re-examine what’s most important. No question we need more courage and empathy in the practice of medicine here and telling your story will have a remarkable impact. Your wisdom, grace and determination to live in full color brings meaning to us all. Continued prayers of healing and pain-free living. Love you!
Thank you
Love you too
I’m praying for you, Jackie!
Your family too!❤️🙏🏻❤️
Thank you 🙏
The world continues to be enriched by your being and your spirit…and will forever. You inspire me. Elaine
Thank you
Jackie,
I am loving you with everything I’ve got and raging against the system. We have to do better.
I am dreaming of walking with you all the way to the Bosporus and sharing a Turkish coffee (with a delicious chocolate-covered marshmallow) as the sun shines on our shoulders. Living!
Oh yes ❤️
Life is not worth living if you cannot live life. That is the message of strength and resolve you embolden in our hearts and minds.
I have hope your story shakes try F out of American medicine – it doesn’t work in so many ways.
Thank you for fighting so hard to tell it, as you live it.
❤️
Thank you
Love you and your strength is amazing.
Xoxo
It is so critical to hear about ways in which the US needs to learn from other both in terms of medical techniques and practices, but also in terms of compassion and empathy. Your reminders and perspective on the subject has been quite eye opening, and something I think about often as I navigate my life in the political science sphere. Sending love, admiration, and thanks your way!
Means a lot, Andrew
Thank you
With every word that you write. Every thought. Everything you do. Your life will continue. You’re a precious gift to all of us, and your work in this world is far from done. Love it all — especially your family — as much as you do and all will be fine. One way or another. BTW, that is a stunning photo. Maybe you’re a saint. Could very well be. Certainly feels that way.
Thank you, Tilly. Definitely not a saint!
Jackie,
I am midway through the process of writing my book, the one you kept encouraging me to write. Apparently, I couldn’t get your voice out of my head! Thank you! You are a force, Jackie Acho, and I am blessed by your friendship. Finding the energy to share your intimate thoughts in your next book is brave indeed. It’s so Jackie! Love you, dear friend.
Xoxo
Jackie,
We don’t know each other. I found your writing here through a friend but what you write resonates deeply with me. I have not faced a life-threatening illness as you have, but I’ve faced life-altering events. In my lowest moment I had a sort of epiphany about my life. “I won’t let ‘it’ win. I want to win, and I can.” Which is not to say I wasn’t changed or completely triumphant in the complete sense of the word. It meant, to me, that I do not have control over everything that happens in my life, but I DO have control over what I do from there. I like your phrase “living in full color”. I have said it somewhat differently – 3 phrases:
1. If I can’t dance, I don’t want to be part of your revolution (Emma Goldman)
2. Living well is the best revenge
3. Live life out loud
Thank you for letting me write, thank you for YOUR writing.
Keep on. You are inspiring
Thank you for sharing, Pat
Live life in full color. Love that metaphor. Your updates keep me living life in full color. Have a ton of work to do but out on lake St. Clair on my boat 3 evenings this past week and watched clouds and sunsets and colors. Work can wait. Thanks for uplifting posts!
Thanks Michael
Jackie, you are so strong and such an inspiration! Hoping for improved outcomes,
All the best,
Thank you, Lee
Jackie, Reading your (wisewoman) posts is….well, here are the words that come to mind: Life affirming (two words, but whose counting), insightful, inspiring, encouraging, visionary (you probably have to think about that word…but you/the posts are).
What is the book about/on/covering? Eileen
Thanks so much, Eileen. The book is a compilation of the posts, in an order that makes sense. It’s about Braver/More Empathetic Cancer Care (title TBD). The draft is done. My editor and graphic designer are working on it now…they are wonderful partners, it’s fun work for me, and we believe it will be helpful to others…much as the posts seem to have been, whether you ever have cancer or (hopefully) not.
Jackie–
I am so happy Susan was with you. She keeps me up to date, but it means a lot to hear from you on your blog. You have an incredible talent and spirit. I am sending my best thoughts your way.
Love you and your whole family, Peter
Jackie- You continue to be one of the most generous people I know! Thank you for your honesty and for investing your energy into your next book. It too, will be another clog in making a positive difference on this experience we call life. Can’t wait to read it- much love, Vikki
Thank you. Vikki
Xoxo
I am praying for you and your family as you continue this difficult journey. You are such a talented and strong woman!
Thank you
With much thanks for your continued inspiration!
Praying for you and yours.
Love,
Ilene
Thank you
Jackie you are truly an inspiration. I think you get your courage, strength, determination and generosity from your mom. I’ve had several long talks with her lately, and she could not be more proud of you.
I look forward to your next book. Keep fighting and keep writing! You are amazing!!! 🙏🏻
Thanks
Hi Jackie,
Wishing you well, glad to hear you are doing the best you can and are somewhat nearby in Chicago every few weeks. Hang in there, happy to talk again any time. We could engineer another round of sarcastic exchanges with Bellon if it brings cheer!
Much love,
Ken
Aw
Thank you 🙏❤️
Thank you for your bravery, empathy, grace, honesty, intelligence, strength and wisdom. We are all better for having you in our lives.
Love you ❤️
Thank you, Rochelle. Love you too
Inspiring, as always. Wishing strength and continued grace.
Thank you, Paul
Thank you Jackie for your words of truth and reality. They encourage me and speak to my heart as I too battle against brain cancer. A native of NEOH, I also know what home means and to want so much for my son and daughter (now teenagers). Keep on fighting and know your words mean so much to so many! ((hugs))
Thank you Lisa
All the best to you 🙏❤️