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.
Every.
Minute.
Of Every.
Day.
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.
No one can be more loving and do more creating than you! Thank you for challenging all of us: the scientists, the doctors, the friends, the family.
Best wishes on the next steps of your journey!
Thank you so much, Laura
Your insight, compassion and bravery continues to inspire me.
I think of you and do tonglen meditation for you often.
Thank you, Sunday 🙏
Jackie – this is such an important post, a critical awakening the healthcare and research system needs to hear. In my world, working with people with chronic disability like spinal cord injury, it is so painful to watch the research enterprise and the commercial enterprise fail these people every day. And it comes down to a lack of courage (on the part of people within that ecosystem) to strive for big things and to take risks of their own. I’m grateful for your voice adding to this fight. People with health conditions should not be the only ones acting courageously. We all need to act courageously if we want real change to the system. Love ya’!
Few people in the system see this more clearly than you, Megan. Thank you (and our dear, dear Hunter) for being among the brave. Love you too! Oh, how I look forward to the reunion lunch at La’P!
Jackie, thank you for another insightful message! You are continuing to make a huge difference with your ongoing messages. Our prayers are with you and other cancer patients. Your friend, Lamar
Thank you for always reading and considering carefully, Lamar. I treasure your company.
Jackie! Jacckie! Jackie!
What a message. You nail it. And dial us is at the same time. Thank you for writing the way you do and sharing and loving and creating. You are all that and more – and you help us all bring those minerals to the surface.
Brian and I are shaking with reverberation – sending love and creativity right back to you.
Love love love, hugs, hugs, hugs and more more more, Jane and Brian
Oh, how I miss you two. So looking forward to reverberating in person. Thank you for your amazing company and love. Much love back to you!
Yes! Yes! Yes! To everything here. I envision you leading this fight in the days ahead when you beat this monster. Unfortunately, until you are actually in the battle or walking with someone in the battle, you don’t really realize how the whole system works. It seems like we would have made more progress by now. Hats off to you for being brave enough to try another approach. Thank you for highlighting the very things that I remember about Jacob and what a beast he was! NEGU ❤️
It’s my honor to intersect with Jacob’s story. I got far enough down the hospice path to realize just how amazing, graceful, strong, incredible, and special is his soul. As long as I have breath to speak and fingers to type, I will continue telling these stories…for the Jacobs who come after us. It’s so true that it’s really hard to imagine how this all works unless you’re in it; that’s part of what I try so hard to communicate. I’m glad it resonates with you, Brandt, and Naomi. NEGU Xoxoxo
Wow! I’ve only started reading your writings. None of us, I don’t think, live without being htouched but grabbed by cancer. It’s a multifaceted disease in that it literally changes lives in so many ways. I was ‘lucky’ as I survived breast cancer (so far) but the treatments suggested and the absolute refusal to ensure my ongoing functional health has been dismal. It’s so minor compared to so many’s cancer journeys but it has been and continues to me mine.
Thank you for continuing to write and help to create awareness of this huge effort to find cures, empathy for all involved and the need to make it a priority in this country.
Sandra, thank you so much for sharing. Yes! You bring up something so important, which is that even in the case of more treatable cancers, functional and holistic approaches that might work with less damage to the body and/or could help sustain remission are ignored in western medicine. It sounds as if you are – like so many of us cancer entrepreneurs – having to find your own answers. I wish you the best on your journey to complete health, sustained remission, and enjoying all of the simple things in life for a very long time.
Jackie
This message is so, so important for everyone to read. I am going to send it to my physician daughter and perhaps she can share it with others. Have you ever read THE EMPEROR OF ALL MALADIES? It is subtitled “a biography of cancer” and is a fascinating read. It is by Siddhartha Mukherjee and I think you should be in contact with him! He is an associate professor of medicine at Columbia University. He would be fascinated, I am sure, by your writing. And he would certainly agree with your viewpoint!
As always, you are in my prayers and I will continually pray for your good health!
Thanks for sharing, Cathy. I’ve not seen that book but can imagine we see eye to eye on many things. Thanks for sharing my post with your physician daughter. The more people inside the system willing to make change, the better. I understand how difficult that can be. Thank you also for the prayers. I Miss you and look forward to seeing you when I get home!
Jackie,
Your comments highlight many salient points about the need to treat the whole patient as well as the huge limitations of current cancer treatment practices..
My mom would say. “Chemo cures my (breast) cancer but ruined my health. I will never do chemo again.” I understand her sentiments better every day.
Jackie, your creativity and life force is expressed and share with us through your words!
Thanks for sharing, Lee Ann. I have another cousin who is dealing with heart issues right now as a result of her breast cancer treatment. These drugs are powerful poisons even as they buy us time. I’ve made peace with needing them in some circumstances because the cancer is worse/we’d be dead, but we should have better answers.
Jackie, I have been following your journey since the beginning. I am aware of the lengths you (and your family) have gone through to find answers and wholeness. I marvel at your courage and determination. Please know your writings lift and inspire me in my struggle of being autoimmune. I pray that God continues to work through you and your writing. Peace.
Thanks for sharing, Marge. Autoimmune issues are another difficult and poorly understood category in western medicine, creating daily struggles for too many people. I wish you all the best in finding answers on your health journey. I’m so glad you find some inspiration in my writing and hope and pray you also find some excellent integrative support and healing. Peace to you as well
Deep gratitude, Jackie, for your clear-eyed, impassioned plea for our healthcare system to treat patients as people to be kept well and healed from evidence based medicine, yes, plus creatively and courageously. How to actuate your message – richly informed from your insight, wisdom, imagination – with the established and the entrenched researchers and practitioners? I want to figure out tonight how to carry that into action!
Here in the hood, Cathy and I love hearing from you through your posts. Your voice sounds so resolute and strong, ever hopeful and creative and loving, as you are. Sending love and warmest energy to you, John, Sophie and Grant.
Kevin, I sure do miss seeing you and Cathy. There’s always so much to discuss, including how to inject entrepreneurship into medicine – a topic on which you have special experience and talent to offer! I’m imagining the revolution will be led by consumers who have to break away from the mainstream in order to survive and thrive. Some successful procedures will remain the domain of hospitals (e.g., cardiac surgeries), but HEALTHCARE will happen elsewhere until they are forced to learn and grow. The key is figuring out how to fund THAT instead of putting the responsibility entirely on patients. Maybe new insurance models focused on health will grow. As for the research, that’s another big ball of wax. A hard look at the funding model there is required too, and people who used to work inside but saw a better way (Megan in another comment here is one of those). The more we share, the more we can move. Entrepreneurship inside big systems (in any industry, especially medicine which is so litigious and rules-based) is really really hard, and I haven’t met many people so inclined, but the docs who leave…who set up their own practices and clinics, finally blooming into the healers they wanted to become…they are doing sacred work. Still, it’s difficult because the body is complicated, but the best ones admit that, collaborate with us, and follow our bodies with experiments that make the right tradeoffs. There are some bright lights, thank goodness. More and more. I’d be dead otherwise. We can look there for clues…and this is one place, with some discernment, that our ability to be connected online through time and space is accelerating progress. Consumers/people sharing their experiences finally get to have a voice and connect. There’s a lot of power in that…discussion to be continued!!! Xoxoxo
Sending much love, and healing thoughts. How incredible that you are able to focus your brilliant mind on the structural issues that have caused the cancer epidemic, and the overhaul needed in research and care … while you are in the midst of your own treatment. You are an amazing inspiration to us all!
Thanks, Samara. I think this is how it works. It’s hard to know without being on the inside. From here, it’s so damn clear. Sharing helps make meaning of a difficult experience, in any case.
Excellent! I would like to print this off and send to all of my western oncologists! Without seeking out integrative oncology, I would not be here. Keep writing Jackie, the world needs to hear it and makes the necessary changes!
I will! And you keep searching and living along with me. Such a blessing to have your friendship in this journey. Xoxo
Thank you, Jackie, for yet another message of hope, resolve, and love. You continue to dazzle me with your brilliance and understanding of what needs to change in our approach to health and healthcare. Until the financial incentives to keeping people healthy change dramatically to focus on health before care, we won’t make the progress we have to make to support and promote health as the top priority it needs to be. Sending love and light 💖.
Thanks so much, Denise
Jackie, this is so well written and so important! I pray regularly for changes in our world in many ways—especially in our healthcare system (cancer being #1)! Look how quickly companies have worked to bridle Covid-19? Why isn’t some of that energy distributed to cancer?
You know I love you and miss you and pray for your healing regularly. God be with you and deliver you from this burden.
Love, Alana
Thank you so much, Alana
As I think about it, Covid was an economic disaster and a huge global market opportunity. It makes sense we got to solutions more quickly. Many cancers are the opposite. The financial opportunity is in maintaining/continuing to research/continuing to treat rather than curing the disease.
That’s an amazing post, Jackie! One of the most incisive and insightful I have ever read. I have gotten involved with a group of people on Twitter – docs, metavivors, survivors – to address cancer myths through social media. They are very passionate and divergent thinkers and some of them have thousands of followers. I will be sharing this with them as it is the best way I know how to spread your message, which always seems to reflect my worldview. It sounds like you are doing well on your journey. You are always in my thoughts and prayers. Candace
Thank you so much, Candice! It’s wonderful to have your fellowship.
“I continue to write because that’s what I can do.“
Thank You Jackie for your insight, strength and gift of writing. Love from St. Paul’s, The Heights and the whole world.
Aw, thank you so much Kari. Xo
Hi, Jackie, Chuck Watts tells me that you are in Istanbul getting treatment. I spent 3 weeks in Turkey back in 2007. It is a country I love very, very much! I have Merkel Cell Ca. First dx & sx was in late October. Yesterday, the 3-month post procedure PET scan shows another tumor deep in my upper, left arm.
May I ask:
Are you planning on staying in Turkey much longer?
Is the facility treating you affiliated with MD Anderson?
Hi Anita, I’ll be here through June then back and forth. No affiliation w MD Anderson or any American traditional medical institution. I did all that to no good end already. Naturopath knew about this place.
Please share with me the name of your Naturopath and or facility in Istanbul.
I’m ready to seek different treatment than what is available here in the US.
I fell in love with Turkey and her people during our Akbash Dog, International
group trip back in 2007. We were there for 3 weeks. We were hosted by Ozmangazi Univ, Seljik Univ and the Turkish Army, based near Bursa. We rented a touring bus and traveled to some very remote villages. I fell in love and continue to love the people of Turkey.
Anyway, if you don’t mind, please share with me the name of the main medical group to which the Naturopath recommended.
You are the inspiration I’ve needed. Thank you.
Hi Anita
It’s Chemothermia in Istanbul
Dr. Slocum and his colleagues
Dr. Nasha Winters and her network, INcl my naturopath in CLE, Dr Laura Mouriño, you’d me about this place after US chemo failed me and fully naturopathic work wasn’t enough. This place integrates the two
I wish you the best bc and understand how hard these decisions and treatments are.