Jackie and John, Istanbul, March 2, 2022
(2nd anniversary of ovarian cancer surgery)
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.