Jacob Butze, on vacation in France,
before being diagnosed with ALL (Acute Lymphoblastic Leukemia)
As an ovarian cancer warrior/survivor/patient/victim/thriver over 2 years, I’ve been told countless times to:
- Be brave!
- Be strong!
- Be positive!
Here’s what I can tell you from this side of the fight:
- if only cancer researchers and business people were as brave as the patients, we would have upended a system that is not serving patients but rather profit/insurance companies/big pharma/careerism. This is true of all diseases, but cancer patients too often pay the ultimate price.
- if only oncologists were as strong as the patients, all doctors would have the courage to admit what they don’t know/can’t do and sit with us in that devastating reality rather than awkwardly tousling someone’s hair and making a quick exit after announcing nothing can be done and she has 3 months to live…only to be so wrong 4 months later when the patient is very much alive.
- if only cancer caregivers were as uniformly positive as the patients, no one would bluntly tell a patient dressed for a run that it was time for palliative care based on a poorly understood marker…and be so very wrong 2 years later when that woman is still alive!
There are bright lights, such as integrative and intuitive nutritionists who put patients first, entrepreneurial clinics that operate outside the constraints of the mainstream system, and smart and curious doctors who never stop learning. But these are not the norm that most patients encounter.
We put a lot on patients – to do, to be, to feel, to try, to work – when the truth is that most of us have sensitive genes that make us canaries in the coal mine of this toxic world. Cancer is an epidemic for a reason. That reason is not that we are mutants or didn’t take care of ourselves. I say this as a Ph.D. chemist who trained in a cancer-focused lab at MIT, a mom/daughter/wife who helped heal family members naturally, a successful entrepreneur, and now someone with way too much experience inside the machine of cancer treatment.
The reason cancer is an epidemic is that the system of research, treatment, and prevention of cancer (=what I’ll call here “cancer science”) doesn’t measure up to the patients.
If it did…
Cancer science would be hardworking and courageous.
- We would never ever give up, like Jacob who was doing leg lifts hours after being told he had days to live. Leg lifts, so he would be in shape, because that’s how this outstanding scholar-athlete rolled, even in the aftermath of the most devastating news a person can hear. How many of us would do that? Slowly but surely, I ran around a track all the way through the first round of chemotherapy. These days exercise is harder, but I feel better when I do it because I’m still here…and Jacob did leg lifts until the end. I’m also inspired by Carrie who has been living with active stage IV ovarian cancer for years, searching, seeking, working in every way imaginable to survive for her daughters. She took up yoga. She changed her diet. There isn’t a book she hasn’t read, a podcast she hasn’t heard, or an idea she hasn’t considered.
- We would have the courage to do whatever it takes, such as lie in full-body hyperthermia with chemo dripping into our veins, get on a plane to Turkey when the US system fails you, move to Atlanta for integrative treatment, or subject your body to countless surgeries and maintenance chemo just to be around for your young children, as our friend Jack did until he couldn’t anymore. Cancer science would push boundaries, take calculated risks, and seek exponential benefits with multifactorial and combinatorial therapies. Most of these therapies aren’t even risky and are approved for other uses. They are well known in many parts of the world and safe but never incorporated into western care (e.g., plant-strong ketogenic diet, supplements, proven techniques for emotional wellbeing and trauma healing, hyperbaric oxygen, mistletoe therapy).
- We could look in the eyes of children and honestly say we are doing the best we can to fight a disease that is growing exponentially. Those of us surviving cancer with and for our kids do this every day. If that kind of bravery were the gold standard of cancer science, we’d have more true cures and fewer copycat drugs or conference backslapping that forwards careers but leaves statistics the same for literally five decades.
Cancer science would focus on what matters, driving for meaningful differences in survival.
- At the end of life, things get very clear. My friend Michele shared the realization that we’re here to create and to love in her final weeks. It doesn’t get much simpler or clearer than that. I’ve been far enough down this path to gain a new appreciation of the simple things too, most of which revolve around love and creation, just as Michele said. Cancer science should simplify as well, rather than hiding in complex nomenclature and what pretends to be science when it’s more like throwing spaghetti against the wall to see what sticks (=earns a patent and a few more $ even if it doesn’t confer any meaningful time or health to patients). Cancer science should be laser-focused on meaningful survival and high quality of life. Current survival statistics and a false belief that an exponentially growing number of humans are somehow unlucky mutants are unacceptable. Cancer patient bodies know better. We took good care of ourselves, sometimes increasingly so, becoming sicker when we couldn’t get ahead of the toxic assault. We have convinced ourselves that the problem of cancer is so hard to solve, but are we really always focused on the right questions? Research is only as good as the questions we ask.
- So many patients manage to focus on love and stay present for their families through the assault and pain of treatments and increasing disease burden. I remember the final days of my Uncle Ray who died of pancreatic cancer. I was too young and inexperienced then to know the strength it took for him to say goodbye to all of us. I marvel at it now. I still remember how my cousin Brian, dying of brain cancer way too young in his early 20s, reassured his mom he would “be okay, no matter what.” The people who die with grace seem even more heroic to me now than the people for whom the treatment works, enjoying remission for years to come. Jacob spent some of his final time writing letters to his family. Can you imagine what it takes to actually DO that? I can. I’ve been scared to death multiple times now and written two versions of those letters. I cried through all of the writing but simply had to let my family know the depth of my love. Again. It matters. Jacob’s last words to his family were, “Thank you.”
Cancer science would drive for big rather than incremental change because we would all be irate and motivated to reverse the epidemic of cancer touching all of us in some way, whether it’s you, someone in your family, or a friend.
- We’d insist on a cleaner world. Our kids have some inkling of this challenge, and it scares them. Cancer patients’ bodies are leading that rebellion. Screaming, in fact. If only cancer science would listen.
- We would upend the healthcare pyramid so that it would serve the patient rather than the obscene inversion happening now. Pharmaceutical companies, insurance, hospitals, doctors, and careerist scientists all benefit at the top of the current pyramid while too many cancer patients still die, crushed at the bottom. Cancer victims face this truth head-on, every day.
- Cancer science would be entrepreneurial, like the patients who are willing to do treatments “unproven” in our western system but showing promise nonetheless. There are no new data without meaningful experiments. Most clinical trials in the west confer a few weeks or months of low quality of life. Experimenting outside of these constraints is the only way to make the kind of serious improvements we need. Entrepreneurial doctors have to do this in private clinics nowadays. Thank goodness there are, at least, these options, but it’s not enough to help the tsunami of cancer patients now and in the future. I’m all for protecting patients, but we need to question whether that’s what the FDA, CDC, and other government agencies are really doing for us vs hemming researchers into incremental science. The evidence suggests not. We are sicker than ever without breakthroughs in sight.
- Cancer science would measure what matters and truly understand it, not leaving us terrorized by markers that literally rise and fall by a thousand from one week to the next with few people even questioning why. Even more important, measuring upstream terrain markers before anyone ever gets cancer would be part of mainstream healthcare (rather than waiting for us all to get sick). That would truly be HEALTHcare.
Cancer science would be creative, curious, humble, and empathetic because that’s part of our purpose here on earth.
- Patients heed this yearning to create, as do the music and art therapists who work so hard to help us feel that spark no matter how we are doing physically. Hollis wrote and sang music until he died of pancreatic cancer, with Tori’s help. Jacob kept playing the guitar. Kim made beautiful art right up until she passed from gall bladder cancer, with the materials and gentle directions Barbara and her team so thoughtfully shared. If they can create in the midst of those realities, surely we can all do better in more “normal” circumstances. I tried my hand at the music and the art, neither of which are my gifts, but both of which kept my pilot light on. I continue to write because that’s what I can do.
- Patients are curious. We try ALL the healing modalities, special diets, emotional and spiritual exploration. If you haven’t been on this kind of journey, you may have no idea how many there are and how hard we work. We leave no stone unturned and no question unasked. Cancer survival is currently a function of having a popular (=bigger market like, e.g., breast, prostate) cancer caught early on that fits the research paradigm (=consistent with the 5 % mutations identified through the human genome project). What about the rest of us? What’s driving the other 95%? Why can’t we move the other statistics (ovarian cancer survival has been dismally the same for 50 years)? What about prevention? These questions beg an answer. Curious cancer science would start with that big picture, grabbing hold and not letting go, like a cat with a ball of yarn.
- Patients are humbled daily, often facing the reality of difficult cancers and knowing remission is not a typical reality but searching for clues from their bodies nonetheless. There’s a lot – too much – we don’t know. The body is complex and we must honor and marvel at that design, realizing we’re only chipping away at a surface understanding. But there are clues in synchronizing w the natural world in ways we’ve failed to do because of modern arrogance.
- Patients get deep lessons in giving and receiving empathy, including from the old souls who keep us company on this brutal journey, no matter what. They are able to metabolize news, keep their own triggers and biases at bay, and sit in our reality rather than separating themselves with platitudes. Cancer science should not be about patented drugs that don’t really help, iterative publications and career progression, or profiting off our bodies. It should be the optimal combination of realism and caring, taking patient outcomes and physical and emotional experiences into account.
- Being empathetic means listening to our bodies and honoring that design, the way Michele did in her journey, and even on her way out of this world. She let her body and soul guide her and her family through that transition, accessing the mystery and beauty of it all. There is so much we don’t understand, spiritually as well as medically. One of many, many things we don’t understand is the role of mold and other inflammatory issues in cancer. My body gave us some clues about mold and cancer if only cancer science would pay attention.
Patients are all that, especially the ones who faced death with grace.
The truth is that cancer science is not all that.
We don’t need to tell patients to be strong or brave or positive.
Our lives require it.
We need earnest company more than advice.
Attitude matters but it’s not just ours. It’s all of us. We should all be dissatisfied and motivated to do the right work around cancer so that none of us has to suffer anymore. I sit in special admiration of those who have braved the biggest transition of all, in more painful circumstances than most people can imagine. I never think of cancer patients who don’t survive as losers; I imagine their soul was fully evolved somehow. Perhaps they had nothing more to learn, even as they had so much more to contribute. What about the rest of us?
As for me. I’m still here so there must be more work to do. More creating. More loving. I’ve felt and continue to feel compelled to bear witness, with empathy and scientific knowledge and curiosity, to the system that’s failing so many of us so that it might be changed someday. I’m not alone. My friends and family who face/have faced cancer – alive and dead – make up too big of an army. Maybe the challenges we faced until now were just part of our preparation for this fight. It takes a lot of bravery, strength, and all of the characteristics above to turn this whole system around. Collectively, we have what it takes. There is no time to lose.
Thanks to Brandt, Naomi, and the Butze family for sharing Jacob’s stories and picture. If you are so inspired, please follow these links to learn more about Jacob and donate to the Jacob Butze Memorial Fund.