I am home, most of the time, these days.
John and I packed up in Istanbul and flew home on May 20th. On May 22nd I rallied to give a commencement address. On May 23rd, I felt the weight of the moving, the 7-hour time difference, the ongoing cancer battle and treatments…and exhaustion. In many ways, I’m still recovering from all that. So, I’ve been quietly reintegrating into life at home.
I’m trying to be patient with low energy, satisfied with walks around the block (instead of runs around the track), and nourished by being a central touchpoint of our kids’ busy lives: graduation celebrations, working, a summer class, an internship, enjoying friends, family dinners, a boys’ trip to Florida, and Fathers’ Day. They haven’t missed a beat, and it makes me happy. Oh, and there is the dog. How is it that Rocky’s even cuter than before? By all accounts, he’s had an emotional year, and he seems so much better with his family altogether now. I’m happy to be back in my kitchen, cooking for myself and our family, and eating their delicious food too (well done on the keto-friendly eggs benedict and berry cobbler for Fathers’ Day, Grant and Sophie!).
It’s been a big adjustment being home, and also as if I never left. Time is strange that way. At first, I wondered how I fit…but that quickly became clear. Our kids lead the way. They have kept their $&*# together throughout this whole journey. In many ways, they are mature beyond their years. They don’t need oversight so much as love and support. That, I can give in spades. And admiration. I admire both of them so much and revel in the adults they are already. I really like this parenting moment.
I have my own lifeforce here too. Another book is coming together about braver cancer science and more empathetic cancer care. Interest in other work on empathy, with the police and personally, continues via podcasts and invitations to tell the story (e.g. the City Club of Cleveland). Of course, too much of my time is still spent fighting, mentally, emotionally, and physically, late-stage cancer. Anyone who has been there knows, it’s a full-time job all by itself. Nutrition. Supplements. Treatments. Tests. Meditation. Exercise. Prayer. Absorbing new news. Reconciling ourselves to the present work and traumas and accepting an uncertain future. And so on… I am not always gracious. It helps that this work is broken up by occasional fun visits, walks, and outdoor lunches with friends and extended family who keep us company along the way, although there is energy to conserve and still a pandemic to consider.
My life in Istanbul feels like a dream. I’m still in touch with friends there, though, so I know it was real. I also know they saved my life, because my memories of home before I left are painful, physically and emotionally…that was real too. The toxic mold issue that dogged me before/during/after diagnosis and the first round of treatment is gone, gone, gone, remarkably. Turkey gets credit for that too. Time at home now feels old and new at the same time. I still mourn the things that are more difficult than before cancer…I can’t seem to shake 51 years of healthy body memories even by acknowledging 2.5 years of struggle. When I dream, I am well and whole. Awake, I feel the loss of life as it might have been…and as it seems to continue for our friends and family because it’s apparent here. It’s all around us. John and I (and Sophie and Grant) have jumped lanes, and we don’t get to go back.
We do get to be home and together though, most of the time. Our solution for the summer is integrative oncology via the Block Center in Chicago – i.e., safer chemo – every 2 weeks. They are old friends on this journey. Via supplements and nutritional advice, the Block Center helped keep me feeling well and without side effects throughout the first round of chemo from April to September 2020. As in Istanbul, they deliver chemotherapy drugs along with nutritional infusions and hyperbaric oxygen to protect healthy cells and ward off side effects. So far, so good. As important as it was initially, it’s crucial to have integrative oncology when you consider how much and how long my body has endured these treatments. This is true for anyone with a difficult cancer. Full-body hyperthermia is not part of the deal here as it was in Turkey; it’s not legal in the US. It was effective, but I do not miss it. Brutal. Truly. I challenge anyone not to turn into a raging bitch in that chamber!
You know what’s funny? My view from the infusion chair in the Block Center is green, with lovely trees and birds nesting these days. What I didn’t notice the first time which was glaringly obvious last week was what else is growing around all of those trees! Can you spot them? Do you know what they are? Have you ever harvested them to make dolma? I have! A nice connection to Istanbul. And I think I’ll bring a cooler to Chicago next time…
Soon, we will know. We are following cancer and terrain markers to see how effective these treatments in Chicago are. At the very least, we hope I remain stable so we can have this time all together before the kids go off to their various adventures in the fall. There are some new tricks (e.g., curcumin and other nutritional infusions) that bode well for addressing the one cancer gene I, and anyone who gets cancer, have (TP53), which may up the anticancer game at this point. We hope so.
Also, being home and in the midst of our family has benefits that can’t be quantified…or can they? Before I even took more chemo in the US my cancer marker went down by ~30%. Maybe that’s the “empathy factor” at work? In any case, we will know how these treatments are working and have the data to make adjustments that might help…keep us home, most of the time.
So, for now, every 2 weeks, we travel to Chicago for 3 days to get chemo sandwiched between nutritional infusions. I wish it weren’t so often. I wish it weren’t so necessary. It is our reality for now.
The funny thing is…
Chicago is where John and I met and fell in love.
Chicago is where we thought we might live out our married life, or maybe some part of retirement.
So here we are, on another adventure…engaging in an alternate future (regular residents in Skokie, dinner out in Winnetka, appreciating the beauty of Lake Michigan in the summer, the chance to see dear friends) with a similar twist (Jackie getting pummeled with kinder, gentler chemo as part of the deal). Oh, to have retirement without that price! Is that too much to ask?!
I so often wondered what life would’ve been like for us if we stayed in Chicago. For now, I can say, we love Shaker Heights. It’s a special bubble in this country. We would’ve loved Chicago too, but it’s hard to imagine how life might have been better, especially for our kids. So, there’s that. I can stop that particular kind of wondering now.
For our kids, adventures await. Grant moves to Villanova for college in mid-August. Sophie moves to Granada, Espana (!) for a semester abroad in September. Oh, the places they’ll go, with their able bodies, thank goodness. I couldn’t be more excited for them and am so glad to be here to help them get ready. We will be empty nesters, but what it means is so different than what I used to imagine. For now, I’m thrilled to see them living their lives and relieved that our adventures in health don’t seem to slow them down much.
No matter where our kids go or what they do now and always, the rhythm of home keeps beating inside. I know, because it was with me in Istanbul and resumed at a closer range/higher volume here at home. It continues to sustain me through brutal cancer treatments in Chicago and tests, etc, here at home. That rhythm is what we’ve built together and the legacy we all carry, across time and space.
It never stops.
Like a dance.
Like a heartbeat.
Maybe this is what’s meant by “home is where the heart is”…it’s comforting to know you can take it with you.
It’s right there, inside.
Always.
So wonderful to see you at home! Fabulous to see you at Grant’s graduation!!!
Sending all my love and energy towards continued positive progress on this challenging health journey.
Enjoy every minute with your beautiful family!
Xoxoxo
Thanks so much, Samara. I’m hoping I’ll be in shape to come to NYC for Board meetings this fall and have the chance to see you then. Xo
I would love to see you! We’ll find a way to make it happen soon!
So happy you are home and being with your family and friends. Know you are in my heart and prayers all the time.
❤️🙏
Hi Jackie.
It is so good to hear from you. I thought about you time and time again over the last week or so. Congratulations to Grant and to all of you on your journey.
Thank you, Carmen
Jackie, Somehow one of my former colleagues from The Cleveland Orchestra must have written a comment on a social media site that allowed me a peak into your life these days. I’m so sorry for the pain and suffering you’ve endured but your writing is exquisite. Sending you healing and peaceful vibes, today and always. Laurie
Thank you, Laurie
Dear Jackie- So glad you are SWEET HOME and also in SWEET HOME CHICAGO from time to time!! Wishing you and the family ALL THE BEST!
Thank you, Laura
“home is where the heart is” rings so true. While it’s great to have you “home,” your spirit and that of those around you is evident in any area code. You are a special and adored family.
Right back atcha Butze family. Xoxo
Jackie
I am living here in Chicago now, located in Lincoln Park. Please let me know if there is ANYTHING I can do for you before, during, or after your visits to the Block Center. A friend at UC is an executive at the medical school who I’m sure would offer assistance if needed. Sounds like you have that part covered. Do you have time or capacity to visit museums? Would be happy to be your companion and design a healing tour at the AIC or MCA. Whatever you think might bring you joy. I’m here for you.
XXJill
Thanks so much, Jill
What an awesome family picture! I remember holding Grant in my arms shortly after his birth at your parents home!
Yes Jackie! I spotted the grape leaves! I was trained well during my 10 years in Monroe where the River Raisin – French translation..River of Grapes -where they still grow along the entire river stretching from Brooklyn MI to Lake Erie! I bet you wanted to get and and snatch some of them!
Enjoy HOME and thanks for being our inspiration!
Fr. Brian
Yes!
Xoxo
Glad you are home and able to enjoy your family. Proud to call you a cousin. ❤️🙏🏻
Thank you, Lana ❤️🙏
❤️❤️❤️
🙏🙏🙏
Hi Jackie, what a beautiful and thoughtful reflection of what it feels like to be home. We should all stop to capture those feelings and hold on to them! Keep writing, you help us all create more meaning in our lives. xoxo
Thank you, Jennifer
Xoxo
So glad you’re home, cuz. XO
Love you, cuz
Xoxo
You are still the most amazing person I know. And I know that the love you are surrounded with here and the love you give, is helping in your journey.
You remind me of the tree pose. Tall and strong and so very balanced. Like I said, amazing.
Namaste, Cathy 🙏❤️
So glad that you are home, Jackie – and thank you again for these profound and important thoughts. Writing a book is an incredible way to share all that you are learning and feeling. Just collecting these essays would make a really impactful book! Sorry to miss you at bookclub but sending love and hugs to you and your whole family –
Thank you, Bonnie. Yes, the draft is done. The essays organized themselves!
Once again, a fabulous post. I’ve been listening to a podcast called ‘ologies’ hosted by Allie Ward. It’s really interesting and engaging. A recent one was on gelotology –the study of laughter. They talked about how everyone should be intentional about laughing every day and cited that it has been shown to improve cancer patient outcomes. Thought of you and know that somehow you keep finding joy and laughter in your journey!!
Yes, so interesting
Thank you, Barb
So glad you’re home with your beautiful family Jackie!
I hope to see you in person – when you think the time is right.
Love you!
Love you too!
Jackie so glad your home where you belong Your always an inspiration to all of us. Loved the picture of the four of you. You have a wonderful family. Love you💕💕
Love you
Jackie, this post makes me so happy 💖 Your warrior spirit is inspiring, and your resilience is amazing. Holding you and your beautiful family up in prayer for more joy…more heart…and more love. Thank you for sharing your journey.
Thanks so much, Denise
How wonderful you’re home! You and your family are such an inspiration to us. I hope our paths will cross again! Prayers ❤️🙏🏻❤️
Thank you, Jenny
Jackie,
Congratulations on the graduation glad you’re home . Wishing you well
Everyday
Hugs
Jo
Thank you, Jo
Our two oldest were born in Chicago (Evanston) and we were married there so a big piece of my heart is there. So happy that they have the integrative care you need – not too far from home. You always show so much emotional intelligence and grace. Love you sweet one!
Love you too, Laura
Woohoo!! Was waiting for this essay from home sweet home! You are the wind beneath so many wings, Jackie…in addition to your own. Look for Leslie in the chair next to you at Block. Thank you for your wise counsel to her. Chicago is glorious in the summer. Just got back yesterday….Lake Michigan is truly an ocean without the sharks and salt! And leave it to you to notice the dolma, as I did today along the Shaker median;) I picked some and sent well wished to you with each pick…like Reiki with food! Love and light, brave sister…love and light and healing always❤️
Thank you, Roxanne
I thought of you with the dolma!
Welcome home Jackie. There is deep healing un being surrounded by love! You are so brilliant to take it in deeply. Love you!!
Love you too
So glad that you are able to spend more quality time with your family and friends.
Wishing you much success with your treatments in Chicago.
Thank you, Diane
Jackie,
Your post was….well, a joy to read. Keep posting!
And, when you feel like it, come visit the gardens at St. P’s…and maybe take a little something home when you leave (a twig of sage, a bit of lovage, a fairy rose cluster, (but watch out for the attack thorns!), a fistfull of sooooooo fragrant lavender stems…to enjoy at home…..Eileen Beal
Thanks, Eileen
So glad you are back!
Thanks Lee
Beautiful sentiment, Jackie. So glad that you’re home with your favs! Summertime. Sending hugs, just a few feet across the lawn.
We walked by your house today w the moving trucks. Sad to see you go but excited for your new adventures.