How are you today?
“I am well in all the ways that really matter.”
– Akua (aka Mary Alice) Saunders MEd, MSN, CNS
My body knows why I have ovarian cancer. I’m finally listening, so now I do too. I didn’t get the answers from Western medicine, functional medicine, or even the scores of holistic healers who have shared wisdom through the years. I got the answers from empathizing with my body, which should be the most normal thing in the world. It’s not. Our culture and medical practices too often dissociate us from our embodied experience. In so doing, they sometimes hinder us from healing. Reconnecting with my body has been an unexpected blessing of this cancer journey.
A heartbreaking and heartwarming thing about being open with a cancer diagnosis is the countless people who write/call/text to share their stories. It’s always inspiring but also sad to know I’m not alone. Not by a long shot. Cancer remains an epidemic, despite so much time and money spent on research. In the reproductive cancers especially, people I’ve known for years have only recently revealed their heroic journeys. I understand why. We don’t want to be written off, which is a strong temptation in a culture that struggles so mightily with mortality. We don’t want you to see us as less of a woman or a man. We’re not. We’re still here, with as much to say as ever. More, even. I don’t know anyone who has walked the cancer journey or empathetically accompanied a loved one with the diagnosis who isn’t forever changed. As my fierce two-time cancer-beating cousin Rhonda has said, “It’s a cool club.” The coolest club you NEVER want to join.
When I was first diagnosed, I wondered, “Why me?” I’m only human. People who know me were shocked too because I diligently work at practicing a healthy lifestyle. I woke up to environmental toxicity years ago and cleaned up our family act. I cook and eat clean and thoughtfully. I teach yoga for goodness sake! In people’s responses, I also detected a combination of faint worry (if you, then me?) and unspoken hope that what happened to me was the result of a difference that would be reassuringly unique. Do I have one of the typical ~650 cancer-causing genetic mutations? No. But, it’s okay.
“Why me?” turned into “Why not me?!”
I have an unusual and powerful arsenal of tools and experiences. Although nobody handed over the Holy Grail, there were a lot of puzzle pieces to pick up and put together. I’ve been practicing that kind of work for decades, and this is the project of a lifetime for two strategists like my husband and me. It’s amazing what you can sort out these days with a headful of science, a ton of experience in healing, great support, and the wisdom of online crowds, accessible as never before. Still, none of this could happen without the unusual blessing of feeling well most of the time even in chemotherapy. Another blessing these days is unfettered access to intuition and discernment, fueled by love, encouragement, virtual healing treatments…and so many prayers. There is no way to repay it all, but maybe this is something. Maybe what I’m learning could help someone, somewhere … so here goes.
I got cancer because my immune system failed.
My immune system was distracted off and on for approximately 6 years and then acutely challenged prior to my cancer diagnosis. Random cancer cells grew unchecked. Here’s the logic:
- My body struggled with environmental toxins like heavy metals, other chemicals, and molds that don’t belong in a body. It’s a common modern challenge, and I was making good progress.
- Combining environmental triggers with unusual stress puts the immune system on high alert. That’s a double whammy. In hindsight, I can see that combo initiated Mast Cell Activation Syndrome (MCAS – see links below).
- “Are Mast Cells MASTers in Cancer?” My body says yes! Maybe not all the time, but sometimes. Although there isn’t much published yet in the medical literature, this article in Frontiers in Immunology from 2017 was prophetic. Medicine too often operates in silos, but the oncologists and immunologists should get together.
I have data on my own body through the years to support all of this logic. I reviewed countless scientific articles, putting my chemistry Ph.D. to good use once again. If anyone, including me, at any time in the months prior to my diagnosis had understood all of this, I would not have cancer. I know it. My body has told me so. How?
I feel better now than I did before I was diagnosed. Oh, not always. Chemo is brutal on a human body. However, in the low moments … when my husband holds me physically and emotionally without words … answers slip through the haze. It’s helpful that my personal adaptation to stress is to solve problems. Now that the side effects are under control, I am thankful for the life-saving growth factor drugs (Neupogen and Neulasta) that are typically required to jack up white blood cell counts to protect chemo patients from infections. And yes, it’s an especially good idea to use them in the middle of a pandemic that has ended socially before it’s physically over. But the side effects? In my case, a constant headache. Hives and itching all over. Bone pain. Waking up every 2 hours at night. The scariest one? Brain fog. Better hurry with that Googling!!!!!…..
Then, it happened. The pieces fell into place because the most revealing thing about this new discomfort was that it was familiar. For years, rather than empathize with my body, I carried on. Sometimes, I numbed, but mostly, I just carried on. Environmental toxins? Not such a big deal; we don’t have cancer in our family (yet). Couldn’t sleep? Get up early and use that time to get work done. Increasing food sensitivities? Use all that creativity to cook around them. Dealing with emotional toxicity that made my stomach tight? Do what it takes to finish the job because “this too shall pass.” Meanwhile, my immune system went on high alert. You can only live there for so long before your body really screams to get your attention.
Immune dysfunction manifests differently for different people, but the hives were particularly familiar to me. Naturopath Beth O’Hara lays out MCAS basics clearly, generously, and virtually, because there are more people suffering than she can personally help. If any of this applies to you, please don’t worry. MCAS does not ever have to tilt into cancer. There’s a lot of comfort in knowing that this may be one more way cancer won’t seem as if it comes out of nowhere, not to mention how well a healthy immune system defends us naturally during pandemics. There is so much you can do now that doesn’t cost a thing. Best of all, if any of these mysterious symptoms applies to you, you can feel better.
TO LOOK INTO MCAS AND HEALING, START HERE:
- Mast Cell Activation Syndrome 101: The Beginner’s Guide to Healing. Get the free report. Check out the common stress triggers listed (#1 is important).
When I shared these ideas with rock star integrative oncological nutritionist Michelle Gerencser from Nutritional Solutions, she said the MCAS-cancer connection makes sense for many, perhaps all, of her ovarian cancer clients. She has decades of clinical experience. So, this was empowering! We adjusted my supplements to help metabolize excess histamine and treat MCAS naturally, even now. With natural support, the symptoms dissipated almost immediately and ultimately, completely. The clouds parted. The angels sang. For the first time in months, years really, I felt an intimate knowledge about what my body needed.
Not only do I continue to feel surprisingly well, but we are also supporting/rebuilding my immune system even in the midst of the chemo assault. This way my body will continue to kill cancer cells, naturally. I know I’m on the right track because I feel good most of the time even after extensive abdominal surgery and while going through chemotherapy. Whaaa?! True story.
What does “feeling good” mean?
- Running 30 min around the track or elliptical with interval training every day
- Sleeping 6-8 hours without interruption per night
- Clear head
- Comfortable skin – some have used the kind word “radiant”…no doubt, I am benefitting from low expectations during chemo!
- Hopeful and peaceful, much of the time
- Fully enjoying cooking and eating a plethora of healthy food
- Able to focus and meditate
- (TMI WARNING: if you haven’t been touched by cancer and/or are squeamish, look away…) Textbook poop every day, sometimes twice! If you have experience with cancer, you know this is a big deal. Let’s be honest, textbook poop is a big deal for anyone over 50, really.
- Able to do ALL yoga poses, even headstand! Yay!
It’s not all in my control. I know that. Still, I’m filled with hope and powerful empathy for my body. No matter what happens, I’m healing deeply. I understand what my friend Akua means in the quote above. She’s as wise as they come. She’s equally as youthful as many decades of open-hearted curiosity and continuous learning make a person. She’s also African-American, which means she’s endured a lot in her lifetime. Even in the midst of physical discomfort, she knows what it is to be well. To be surrounded. To find joy in the midst.
I too am already well in all the ways that really matter.
I will keep fighting, living, and sharing. Perhaps some of this is helpful to you, someone you love, or the work you do. If these ideas ever resonate, and you want to reach out…I’ll be right here.
Meanwhile, more and more, I will continue to empathize with my body, listen to my soul, and take good care of my whole self. I hope you can too. It feels good.
“I tell this cancer these things:
thank you for teaching me to stop and listen;
thank you for reminding me of what is truly important.
You can go now.”
– Belleruth Naparstek, Health Journeys Meditation
Many thanks to John LeMay for thoughtful developmental edits to this post and partnership in every way. “Husband” is not a big enough word for him. Continued thanks to Rhonda Laurencelle for inspiration, encouragement, and HUMOR! Much gratitude to Akua Saunders for her awe-inspiring intuition as well as virtual healing treatments, supported by a wonderful prayer team. Thanks to Michelle Gerenscer, Dr. Mark Dabagia, Dr. Steven Waggoner, and the Block Center for ongoing and empathic healing partnership. Thanks also to Andrea C.Turner of ACT One Communications for final edits to this post.
Photo credit (and favorite headstand company): Sophie LeMay
Video credit: Rey Kirby Zullu
For more on how empathy can help us build a better, safer, and less toxic world, check out Jackie’s book: Currency of Empathy – The Secret to Thriving in Business and Life
Jackie I love this so much! Makes so much sense…empathy for your body. And I love the quote. And this picture of you is amazing. And also #TextBookPoop
Thank you, Jen. It means a lot to get your feedback. Xo #TextBookPoop!
Nice! Lovely reading as a gentle way to end my evening. Peace, Jackie, and wishes and prayers for health.
Hi Elaine – wonderful to see a comment from you here! I think of you often as we use your hiking recommendations. Sharon Sobol Jordan and I are heading to one of your hidden gems later today…with binoculars for the beautiful birds 🙂 Take good care!
Love this! Thanks for sharing. Wishing you a textbook poop daily!
Laura – Thank you so much for commenting and for this important wish! It lifts my spirits in these post-chemo days especially. Be well, Jackie
Jackie, We are friends of your parents at Walnut Creek and your mother has been kind enough to share your blogs with me. You have I inspired me to listen to my body. We all have challenging journeys during our lifetimes but need to continue to forward. I keep you and your family, your Mom and Dad in my prayers.
Cathy, it’s wonderful to see your encouraging note here. Empathizing with our bodies is a constant blessing, especially as we grow older. Thank you so much for taking the time to read and comment on this post. Take good care, Jackie
Pretty powerful thanks for sharing. I wonder if this process would help me address my lymphoma. You have given me a lot to think about.
Wow, I hope so, Joe! I’m so glad this post gave you some things to think about and wish you all the best in your healing.
Beautiful!! Thank you, Jackie!!
Thank you too, Elizabeth, for taking the time to read and comment…and for your participation in the virtual healing treatments I receive from Akua and the prayer team. They help so much with the intuition I feel flowing these days as well as how well I feel most days. I look forward to bellying up to the Barre with you again someday soon 🙂 Take good care!
Thank you for so generously sharing your journey and all you are discovering along the way. So impactful, Jackie. Your post left me with a mess of emotions (that last quote really got me!), many questions, and great interest to learn more. I am grateful to have a long weekend to dive into the resources and reflect on the perspectives you have shared. Reading about the connection you and John have made between MCAS and your cancer, I am curious about your experience with the many professional caregivers walking this journey with you in traditional Western medicine, functional medicine, and alternative healing practices. It seems these professionals rarely collaborate in our care so it often feels like we must choose one path or the other, particularly when the diagnosis is cancer. You seem to have found a way that works well for you to navigate and leverage all that they each have to offer. It would be so helpful to hear more about that, particularly the choices you made along the way and how you got to this place. Thanks again!
Sharon, thank you for this note and all the time we’ve spent in walks and talks along the way. It’s all helped me make sense. “Working” with you in this way too, as always, is an enormous pleasure because of your co-creative way and ability to see the big picture. In another recent conversation with Dr. Steven Waggoner (UH Seidman Cancer Center), I turned to John and said his combination of 1) Empathy, 2) Experience, and 3) Curiosity is just right. That should be the way. Of course, it’s not how I’ve experienced many of the healing partners I tried to engage through the years. Western medicine too often numbs or covers up symptoms rather than dealing with root causes, that continue to fester. We treat doctors like Gods, and what a burden that is for them! Alternative healers, because that space is so relatively new…naturally focus on the diets and answers that worked for them and their families at a certain time in their lives (iodine! Vegan! Keto! Epstein-Barr! Strep!). If their answer doesn’t work for you, they don’t have anything else to offer. In every case, I learned something though, and inched closer to more fundamentally healing. Even MCAS is not the full picture for me, but it’s a really important piece, and Beth shares so graciously (spreading her expertise in ways that people can pick up and use safely rather than trying to capitalize on others’ desperation with programs that don’t work at scale). The bottom line is that empathy is key. Co-creating with patients’/clients’ bodies is really important. We all have an “inner physician,” whether they studied any science or not. Dr. Waggoner recently said that he has learned to trust the intuition of his patients over the years. That respect from him is automatically given, not earned by me or anyone else. It also means that we patients have a vital role to play in solving tough healthcare issues. Docs can’t know everything. The human body is complex and amazing, with individual differences in genetics (e.g., MTHFR) and environment (e.g., exposure to mold, chemical exposures, and emotional toxicity). All of that matters, a lot. THe beautiful thing is that answers are getting sorted out by the wisdom of crowds now, with so much online info available, including medical literature. That wasn’t available even a few short years ago. I could do a whole post on all of this sometime! Empathy is the river that runs through it all 🙂
There is also no understating the support we’ve received from Michelle Gerenscer of Nutritional Solutions. When I first figured out the MCAS-cancer connection, she was the first one to tell us I wasn’t crazy! She used words like “brilliant,” “you have found your own Holy Grail,” and “you set me up for the ally oop!” actually. I was in quite a lot of pain and discomfort at that point. It was a balm to my body and soul when she said it. Then, when her new natural, body-supporting supplement additions worked, it was one of the most immediate and miraculous healing experiences I’ve ever had. And Dr. Mark Dabagia, who is a longtime family friend, also approached the ideas with curiosity and empathy. All of that was a big deal too!
Jackie, your strength, insight, optimism and realism are breathtaking. Thank you for sharing your journey. Love & health…
Thanks so much, Carol. Love and health to you too!