Jackie and John, Istanbul, March 2, 2022
(2nd anniversary of ovarian cancer surgery)
Maybe.
At the beginning, those of us with difficult cancer diagnoses hope to do the unlikely: survive the treatment, ring the bell, and be in “remission.” We imagine all the ways and reasons we might beat the odds. Statistically, most of us don’t. Even people with “treatable” cancers sometimes don’t get that ending, even as they win in all the ways that really matter.
Cancer cells are smarter than we are. They adapt to the crude chemotherapies we’ve used for decades and keep multiplying sometimes. Continuing with treatment too often means compromising a patient’s immune system and overall health. We die from the treatments, not just the cancers. At some point, usually pretty early on with difficult cancers, doctors give up. My US doctor did. I should be dead already according to him.
But there are some different ways of thinking about cancer prevention and treatment, more like chronic conditions to be managed through diet, supplements, pharmaceuticals, and when necessary, medicines that are strong enough to turn the situation around.
I worked hard in my adult life to stay in shape, eat well, take my vitamins, hydrate, etc…so I could avoid pharmaceuticals. In fact, I did. I didn’t regularly take ANY drugs (not even Advil or Tylenol) at the time I was diagnosed with cancer. My body is vulnerable to toxicity in many ways I didn’t realize, so cancer was growing just the same. Although that’s some pretty bad luck, it did put me in shape to tolerate the first round of chemotherapy very well. I ran. I ate. I kept my weight up. Parented. Worked. Wrote. All good. That’s not so unusual. I can’t tell you how many of my cancer warrior friends were “so healthy” no one could believe they had cancer. We who are vulnerable were working hard to get ahead of the health curve. Intuitively, maybe we knew we were trying to outrun something. In hindsight, I did.
But the chemo for my ovarian cancer didn’t really work. I rang the bell knowing I wasn’t having a real “remission.” My marker never came into range. That’s not so unusual either.
With ovarian cancer, recurrence happens to most of us over time. Multiple rounds of chemotherapy are common. Even if we eat perfectly and do everything we can to support the treatments and maintain our health. It’s not all in our control. I hate it when that happens. Don’t you?
So what happens next? Well, taking conventional chemotherapy without supplemental support and protection, the treatments become intolerable and/or ineffective. It’s like sending us into war with a BB gun. All the attitude in the world won’t help us win. Obviously, we need better and braver cancer science, preferably that does not include injecting poison into our already challenged bodies and radioactive materials (stored in lead boxes before they mainline it into our veins) to measure progress in PET/CT scans. Seriously.
But maybe there is a middle ground, right now. Maybe treating cancer as a chronic condition is the right kind of guerrilla warfare to keep us in the fight, for now, and ultimately win. It’s not for the fainthearted. The end is not clearly in sight. There is no bell. There are no promises. The illusion of control went up in smoke months or years ago.
But there is hope. Not of life as we imagined it before we were diagnosed, but life, nonetheless. More time to love. More time to create. I suppose it’s a form of settling – or we can call it nonattachment – but it truly sounds better to us than the painful dying process we shook hands with more than once on this journey.
What does it even mean, to treat cancer as a chronic condition? You can think of it on a spectrum really, and pretty much every cancer patient does it in one way or another. None of us is the same after we get diagnosed and go through whatever treatment is required. Even people with stage 1, treatable cancers worry about recurrence and mark anniversaries. Those of you who accompanied friends or family with cancer are never the same either. We change our diet. We avoid toxins. We focus on emotional wellbeing. We take up yoga and become a teacher. We take supplements or pharmaceuticals that are recommended to prevent or interrupt the process of cancering. We all do at least something to ensure we’re not a hospitable environment for cancer cells. No one wants to be in an acute relationship with cancer.
If chemo was never part of the picture for your cancer, you were fortunate. If it was a one-time deal, that’s also pretty darn good in my book. For many of us, chemo is a bad boy/girlfriend we just can’t shake without dire consequences in the not-so-long term. Our cancer cells are that smart and powerful, compared to what they’ve figured out to treat us.
This is where combinatorial therapies come in. Although there may not be a silver bullet, there is plenty of evidence that people can continue with a high quality of life by addressing cancer cells and their body terrain with approved therapies, given all at once. Protective measures (e.g., hyperbaric oxygen, nutritional infusions, antioxidant infusions, supplements) and cancer-toxic therapies (e.g., chemo, pro-oxidant iron, IV vitamin C, hyperthermia, ketogenic diet, a handful of targeted and effective pharmaceuticals) are given together to kill cancer and improve health at the same time.
The and is very important, and what is missing in conventional therapy.
Continuing to give traditional chemotherapy without supportive measures compromises patients’ bodies no matter how strong, positive, or brave they are. In fact, these patients are the bravest of all; how they face their transitions without anger is a marvel to me. Of course, cancer can also kill. When there are no options for conventional treatments, strong, positive, brave patients also face a transition none of us wants to take. We’d all like to die peacefully in our sleep at 100, preferably after a nice vacation and family meal.
What does my experience have to say about treating cancer as a chronic condition? In the case of effective combinatorial therapies, it is an empathetic way to go. It’s not my dream, to be clear. I hoped for remission the first time. I hoped for remission the second time. My imagined timelines are irrelevant. My imagined lives (focusing on work after the kids are grown and flown, empty nesting, retirement, etc) also don’t seem to have much bearing on the reality I’m meant to live.
BUT, I’m still here. Loving. Creating. And I’m both healthier and freer of cancer than I was in the fall. The combinatorial therapies are working. I’m better on 3 dimensions that make the doctors happy: clinically, biochemically/markers, and scan-wise. Will I finish these treatments in Istanbul “in range” and out of danger? Probably not. Will I need ongoing treatment after June? Probably. Is it killing me? Not today. Is it helping me? Most definitely. Are there other experimental options we’re still exploring? Yes, which we will pursue if/when the benefits outweigh the costs to my body.
We have built something of a life here in Istanbul. The city is magical. The people are kind. We have made real friends. We cook. We walk. We have Turkish residency, and I may just apply for dual citizenship to make this all easier. I’m doing my best to become fluent in Turkish. It’s fun. People appreciate and like to teach when you try to speak.
The truth is that I LOVE international travel, immersing myself in other cultures, and being a global citizen.
Always have. Always will. I even love flying, remembering all the trips, all the souls who have passed through my life, grateful for the ways we’ve touched each other. I was an exchange student in Spain the summer of my 16th year, studied French in Switzerland when I was 19, and deliberately chose work that took me across the US and Hawaii, through Europe, to Brazil, and Moscow, among other places. I book a window seat and look out at the clouds. I still get excited about meal delivery (I may or may not indulge in wine over international waters…). Going back and forth for a while isn’t the worst thing (and I really do intimately know lots of worse things at this point). Our son will be enjoying college soon, not wanting us in his business too much (as if he wants us there now!). Our daughter will likely be abroad in the fall. She’ll probably be a short jump from Istanbul, which has excellent coverage of Europe with direct flights. I’m so very fortunate to have a life partner in John who has a similar sense of adventure.
I miss home. I miss our kids. I miss our friends. I miss our dog. Thank goodness, they are well in all the ways that really matter. I’m eternally grateful I was there for our kids during the years they needed me most, and I’m still here on earth for the smaller ways they still do. I miss my kitchen and the chance to cook for them. It will be so good to be back home over the summer, even if that means back and forth between Shaker Heights and Istanbul for a while after June. It will take adjustment for everyone, but if there is one thing I’ve learned to count on, it’s our resilience as individuals and a family. I can’t predict the future, but what I know is that we can face it together.
Sure, I’d rather not be in this fight (at all, much less still after 2 years), but I never wanted to golf in Florida anyway. The whole idea of “retirement” is kinda weird anyway and shifting in seismic ways for all of us. Maybe an apartment overlooking the Bosporus is part of the deal for John and me, with side trips here and there around the world. I can work flexibly from anywhere and appreciate the opportunities people have given me to do so. There is likely some sacred sharing still to be done, bearing witness to this crazy experience, and I won’t stop until cancer is not a threat to anyone anymore…which will certainly take my lifetime. Yes, I still hope my time here on earth includes some kind of “remission.” Some kind of break. Yes, I’m tired. Yes, the world feels unstable. But we watched a pancreatic cancer patient go home to Switzerland the other day – alive, well, and having earned his respite from treatment. An unusual and hopeful example of success with a difficult cancer.
As for me…
I’ve been fighting cancer entirely in a pandemic.
I’ve been sentenced to death twice.
Today is not that day. Tomorrow won’t be either.
We moved literally around the world, while our kids and friends and family hold down the fort at home (some of them joining me here so John can go back and forth – thank you!).
And I’m still here.
So, is it empathetic to treat cancer as a chronic condition?
Yes. In fact, I think that’s always the case if we look at it in the right way.
The idea of remission is just one more paradigm holding doctors back from helping patients. Cancer IS a chronic and epidemic condition, individually and societally. Seeing it clearing is the only way we’ll help people survive, now and in the future.
Jackie, so appreciate these updates and that things look a bit more encouraging. i’m glad you’re embracing istanbul. I hope you are able to see more of the country as time progresses. Love to you and your family
Thank you, Lauren. Love back to you and yours
Another wonderful and inspirational message. Wishing you all the best.
Thanks so much, Jeffrey
Jackie
Well written as usual…no one chooses this path, but I am better for having known you and feel inspired and blessed
Thank you. I feel the same about you, Teresa. So glad you are my chosen family. Xo
Jackie, your words are always special and meaningful to me, even though I have never had cancer. I do agree with your concept of how cancer should be treated because, after all, in many (most?) cases, it is in fact ongoing, unfortunately. It is similar to chronic depression, which is often dismissed by its very nature of chronicity. Please know that I pray for you and send love and prayers to you. You are a strong woman—don’t give in or give up! Love, Alana
Thanks, Alana. Xo
Jackie!
Thanks for allowing us to continue to walk with you on your journey. In many ways its one we all walk. Celebrating, living, growing, falling at times and picking ourselves up knowing we are loved and supported by many. Please know we are with you in love and support. Gazing out the window of a plane has always been a thing for me as well! The view from up there as well as listening to your journey makes me so grateful and yet so humble. Much love!
Fr. Brian
So true, Father Brian. Much love back to you!
Jackie,
I’m buoyed to hear you are feeling better and better and able to enjoy the wonders of Istanbul, but I hate all the pain and suffering you’ve gone through. By sharing your story, you have become a formidable voice on the cancer front. Keep it up! This world needs you, my fearless friend.
You just blow me away, Jackie. You are a force. This is beautiful.
Thank you, Jen!
Thank you, Jackie, for your very informative and personal perspective on the bigger picture of cancer treatment. I believe your journey and your writing is going to inspire individuals to ask better questions of their treatment and create a big shift in treatment options because of the questions being asked. I am sorry for your suffering and I am hugely grateful and inspired by how you transform your pain to purpose. Thank you, Jackie, and much love to you from Cleveland.
Thank you, Mary Rose. You, Jess, and your family continue to inspire me as well. Much love to all of you!
Jackie, so good to know that you are feeling better . I know when you return in June, the list of family and friends to gather with will be long, your writing Inspires, xoxo jo
Thank you, Jo. I think of you often and hope you are well. Xoxo
Always a joy to read your words. Sending smiles and a hug from Ann Arbor 🙂
Thank you, Andrew! Right back atcha
Jackie,
Every time I read one of your posts it gives me strength and inspiration. You have so beautifully shared your journey and battle. I look forward to seeing you soon in Shaker Heights or Istanbul.
All my love, Maggie
Thank you, Maggie. Much love back to all of you!
Sending you lots of love and positive energy today. You are amazing! -Jodie
Thank you, Jodi! So are you Xo
Wow! “Retiring” in Istanbul sounds pretty fabulous if it weren’t for all that pesky chronic cancer. Good for you for all your forward thinking! I hope you get a balloon trip in Capadocia while you’re there. Huge hugs!
Exactly, Laura. A balloon in Capadocia is definitely on the short list! Hugs back to you
Jackie,
Thank you for sharing this inspiring and hopeful update. I feel lucky to be part of your group and to get to keep learning with you. Hearing your voice always brings back the fondest memories of our time together. Much love, laurie
The feeling is mutual, Laurie. Xozo
Sending sunshine and Cleveland love to you Jackie. Let’s make that BB gun for the war the best weapon to defeat the enemy one BB at a time. Jenny and I are heading to the high school to watch Connor shave his head for the St. Baldrick’s Foundation for the 10th straight year. Today is a good day and thank you as always for sharing and bringing more sunshine into all of our lives through your journey. Best wishes for a wonderful weekend in Turkey. Love to you and the family XXX/OOO
We love and miss you all, Dan!
I am deeply touched by you. Love and more love, Glo
Thank you, Glo xoxo
Today is not that day…. Not for that. Today is a day to relish my friendship with you, to think about all I have learned from you. To remember some of the adventures we have shared and to anticipate some that we are soon to experience. To be together. Sending love from my home to yours… wherever you may find yourself on this journey. <3
Love you all, Susan. Can’t wait to see you!! Xoxo
You experience gives me so much hope.
I’m so glad, Joe
Jackie, please know you are continuing to make a difference for all of us lucky enough to know you. Concur that everyone in your camp is looking forward to seeing you when you come home. You are in our hearts and our prayers, Lamar
I look forward to seeing you too, Lamar. Thank you!
Thank you for yet another beautiful reflection on your journey in the club no one wants to join. My husband’s cancer was diagnosed the day before we were embarking on a cross-country motorcycle trip on the Lincoln Highway. We went anyway, and my terror of motorcycle riding was mitigated somewhat by what we faced when we got home. He’s still blessed with good health and wanderlust, and simply doesn’t sweat the small stuff, taking one day at a time and taking the trips whenever we can. You’re an inspiration to many, and I feel blessed to know you.
Thank you for sharing, Denise. The feeling is mutual. Your trips and pictures add to my dreams!
Hi Jackie. Your beautiful and experienced essays make for relevant Lenten reflection. I do appreciate and am reflecting with you in my much-needed prayer moments. Sending energy for wellness your way. Elaine
Thank you, Elaine. Peace
Thanks so much for sharing, Jackie. I. could not agree more that cancer needs to be treated with more than just medicine to kill the cancer. It surprises me that we are not further along with treating the whole patient in the US. I think doctors are well intentioned, but laser focused on killing the cancer and not at all focused on the effects of the treatment on the patient. I am glad you are in an environment that is focused on treating the whole person. It’s a relief to know that you are still able to learn and grow while in Istanbul. I know how difficult it is to be away from home, but you are right where you are supposed to be during this fight. You are able to continue to challenge yourself. (I love that you are learning the language!) Thank you for taking us on your journey. You have an army of people who are sending you positive thoughts each day. ❤️
Merhaba and Thank you Hallie! Much love back to you
Jackie you continue to inspire and bring hope to me and so many.
We are scheduled to arrive in Istanbul on March 15th. I wish we were meeting under different circumstances but I am excited to see you my friend.
Thank you for sharing your wealth of love, empathy and knowledge. You are paving the way for so many.
Dori, I’d prefer a girl’s trip to the beach too but am glad you are finding the help you need. We are ready to welcome you here. Merhaba!
Thank you for this update Jackie. It makes so so much sense to combine these modalities and therapies. It’s disheartening that it is not the norm in the US (I’d argue for most disease)
Love strength and most of all huge admiration to you
You’re right, Eliza, healthcare is not the norm for most any disease in the US, which is disheartening. People are waking up though, and that’s the beginning of change. Much love back to you
Jackie, I’m really glad to read this post. It’s how I describe my journey with dementia. – I refuse to treat it like a death sentence. No, it’s a chronic condition, an adventure, an opportunity for spiritual growth, and sometimes a real pain in the ass. Know that I hold you in my prayers. Perhaps we can catch up in early June.
Having witnessed your (and Emily’s) walk with dementia, I can see the similarities too, Tracey. You’ve done amazing work both physically and spiritually. Thank you for the prayers!
Jackie – Istanbul is indeed magical – but not nearly as magical as you are! Amazing to hear that you are working on your Turkish.
I cannot even imagine the challenges associated with fighting cancer in a pandemic. I am hoping we can all put the pandemic chapter behind us to some extent in 2022, and I very much hope that you can move into a new, healthy phase as well.
Sending much love and healing thoughts! Hope I can see you someday soon.
Thank you, Samara! Much love back to you
Jackie. You inspire me so much. You lay it all out while also boiling it down to the perfect words.
I am grateful for your writing and for your wisdom. I’m glad you are more than ok. I’m glad you chose your own path with this.
Thanks so much, Shari. I really appreciate you.
Wish I could smuggle your puppy and bring her for a seaside walk!
Hi Jackie!
So glad to read that things are going well. That you and the family are adjusting and even thriving! Sending big hugs, and prayers for all of you. Continue in wholeness and have fun!
Thanks Lynette 🙏
AiDS is treated as a chronic condition now and it wasn’t so long ago that it was a death sentence – I think you’re gonna shift the paradigm. If anybody can do it you can. I’m so happy you’re doing so well – marvelling at your tenacity and courage. xoxo
Thank you, Courtney. It’s a reasonable interim answer. I also believe with much better research and medicine cancer can be reversed and prevented. Chemo will be seen as the barbarism that it is.