The Space Between: Stage IV Cancer and No Evidence of Disease

Interview with The Rooted Misfits (Ben & Karen)

Ben spent seventeen years climbing trees. As an ISA certified arborist, he built All Green Tree Care into a thriving small business, moving between estimates and tree work, doing the job he loved. Karen came into his life in 2013, also rebuilding after divorce, also raising kids, also looking for someone aligned with how she saw the world. Together they imagined a future at the lake—a waterfront property where they could host campers looking for an off-grid retreat, a place that would become Owl’s Hollow. They started building in August 2021, the same month Ben finally decided to get checked out by a doctor. That checkup revealed Stage IV pancreatic cancer with multiple liver lesions. Months to live, they were told. The outhouse Ben had started building in pieces at the cottage—meant to move to the campground later—would become something else entirely.

What Karen discovered in the months that followed wasn’t optimism so much as it was a refusal to accept the finality. While Ben’s chemotherapy wouldn’t begin for three months, she researched obsessively. She found Joe Tippens’ story—terminal lung cancer, claimed remission through a protocol of repurposed medications and supplements. Skeptical but desperate, she didn’t accept it; she dissected it. For each element, she hunted through peer-reviewed research going back decades. What she found was a pattern: promising results followed by “we need to conduct clinical trials.” Those trials never happened because everything in the protocol was cheap, accessible, and impossible to patent. No profit motive. But the anecdotal stories were mounting. Karen read McLelland’s “How to Starve Cancer,” Turner’s “Radical Remission,” listened to podcasts with Seifrid. She built a framework of metabolic influence, diet, lifestyle, supplementation. When she and Ben met with a naturopathic doctor who identified inflammatory foods through immunoglobulin testing, she had moved from skepticism to something more dangerous: informed conviction. Ben, facing a terminal diagnosis with nothing to lose, made a calculated risk and started the protocol three months before chemo began.

Within a week of eliminating inflammatory foods, Ben felt better than he had in years. When his scans came back after the first round of chemotherapy combined with the protocol, the liver lesions had disappeared. His tumor had shrunk. Shocked, the doctors reconsidered him for surgery—a Whipple procedure they’d said was impossible. Six weeks after having a third of his pancreas removed, Ben climbed a sixty-foot pine tree. It wasn’t recklessness. It was necessity. He moved through a second, more brutal round of chemotherapy with neuropathy and nausea, but with purpose. By the end, his oncologist stopped treatment early. His scans remained clear. His CA19-9 markers sat firmly within normal range. What Ben and Karen built at Owl’s Hollow is evidence: that a Stage IV cancer diagnosis doesn’t have to be an endpoint, that standard of care is one pillar among many, and that patients have more agency in their own recovery than most are told they do. Their story is an invitation to others newly diagnosed—learn everything you can about your disease, surround yourself with people you trust, and understand that the life ahead might look nothing like what you’ve been told to expect.

With thanks to Ben & Karen.

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1. Ben, you’re an ISA certified arborist who went from climbing trees to fighting Stage IV pancreatic cancer. Can you tell us about your life before the diagnosis - what was a typical day like for you?

Prior to diagnosis I ran my arboriculture business called All Green Tree Care which I was the owner and operator of for 17 years. It was a small business where I only had a couple of employees, however, it provided me with enough income to support me and my family. My typical day involved answering calls from potential customers, doing estimates, climbing trees to either remove them or prune them and many times the cleanup work with staff (i.e., chipping, raking). During the last few years of my business, I also obtained a TRAQ (Tree Risk Assessment Qualification), which allowed me to produce reports for my customers on the health and hazards of a specific tree(s). I loved my job and I always understood that not everyone does. In my spare time, I enjoyed playing volleyball, fishing, knitting, woodworking and spending time with my family.

2. Karen, when did you and Ben first meet, and what drew you both to the idea of eventually living at the lake and starting a micro-campground?

Ben and I met in 2013. Both of us having been divorced and raising kids, were in a similar situation where we were both learning the same life lessons. In particular, we had both realized the importance of being with someone aligned with their own life views, interests and goals. After a year of dating, we moved in together. As our kids were older and we were both realizing we would soon be empty-nesters, we felt it was time to look toward our future and what that might look like. As we both loved the outdoors and had camped a lot with our kids over the years, we thought an ideal goal would be to own a waterfront property where we could enjoy everything about being outdoors but also have a space for our family and friends to visit. Taking advantage of a slump in real estate, we found the perfect place. We fell in love with it instantly. Although it required some work, we knew it would be something we could work on over the years and possibly even move there upon retirement. A year or so before Ben’s diagnosis, a piece of property came up for sale very close to us. We thought it would be a great investment seeing as though property prices were now on the rise. We quickly started coming up with ideas on what to do with it. Since we both loved camping so much, we felt a great idea would be to create a space where we could host campers looking for a private, off-grid experience. We immediately went to work. Ironically, this was about the same time Ben’s symptoms started becoming more prominent. We specifically remember being over there while working in August 2021 and discussing the need for Ben to finally go get “checked out”. That getting “checked out” turned out to be the begging of his stage iv pancreatic cancer journey. While we were emotionally dealing with our whole world crashing down, our little campground project became a focus and outlet. After Ben’s initial hospital visit, I took some time off work and we went to the lake to process everything. We couldn’t do the hard stuff but Ben decided he would start building an outhouse in pieces at the cottage so we could move it over at a later time. Funny enough, that outhouse became the beginning of his healing journey - not the end like we were originally told. The rest is kind of history. Throughout the next year while Ben was undergoing treatments and also on the protocol I created for him, we never stopped building.

The first campground was open for business that next summer while Ben was healing from surgery. Shortly after that, we purchased the lot next to that one and started the process all over again. We now have two camping spots where we host like-minded guests just looking to get away in nature for a reset. One has a small bunkie and large deck overlooking the lake and the other is a tree house of sorts with an upper and lower deck and a small dock to launch kayaks. It’s become and continues to be quite the labor of love and guests say it shows.

3. What specific symptoms did you experience in the months before diagnosis that you now recognize as red flags for pancreatic cancer?

Looking back, there were several red flags, however, at the time we knew nothing about Pancreatic Cancer and therefore, didn’t link any of the symptoms. I had always had stomach issues, however, this started getting worse several months prior to diagnosis. I thought it was from the stress I was dealing with my son who was having mental health issues. I also developed lower back pain on the right side. I attributed this to work given I climb trees for a living. I simply implemented doing regular stretches to work it out but it never went away. I then noticed I was losing weight without trying but again attributed that to working as it was summer and those are the months when I was the busiest. Everything came to a culmination at the end of August when I was really beginning to struggle with all of the symptoms. It was at this time, I started turning yellow. We didn’t even notice it until someone else pointed it out. I then made a doctor’s appointment where tests were conducted and was the beginning of my cancer diagnosis.

4. After being told you had months to live, you immediately started researching alternatives. What were the first credible resources you found that gave you hope?

I (Karen) did the researching. I first learned everything I could about pancreatic cancer. The statistics were frightening so I didn’t share them with Ben. However, as I was learning more about cancer in general, I was seeing a pattern around the topic of inflammation. I connected this with Ben’s years of stomach discomfort and wondered if that could have been a contributing factor. Seeing as though the doctors offered nothing but palliative chemo and that it wouldn’t start for at least three months, I started searching for things we could do on our own to help alleviate his symptoms. The first credible resource I came across was the story of Joe Tippens. I read his whole story and started following him on his facebook page. Still skeptical of his story (and seemingly similar stories from his followers), I needed to dig deeper.

As he made his original protocol well-known, I dissected it and started researching each element. Low and behold I found mounds of peer reviewed in vivo and in vitro research studies showing promise for each of them. These studies went from early in the 90’s up until the current time. It seemed as though each study ended with “we need to conduct clinical trials”. It seemed odd to me that I could not find any studies that involved humans, other than a few retrospective studies. As I dug deeper, I realized the main reason for this was lack of incentive. All of the elements of the Joe Tippen’s protocol were (relatively) cheap and accessible. None could be patented, therefore, no profit to be made by those capable of funding the research. But I could see the anecdotal stories were starting to pile up. Even if only a fraction of them were true, I felt there was something to this. Without completely understanding how each of the Tippen’s elements worked at the time, Ben put his trust in me and we decided to take a calculated risk. Afterall, time was not on our side and we had none to lose. Based on my initial research and the fact that Ben had no other comorbid issues, it appeared this protocol had low to no risk to him. He started that protocol three months before chemo started. I gradually added to it as I discovered other supplements. It was during these three months I continued researching, collecting studies and gained confidence in the growing protocol. The next resources I came across and felt were very compelling were Jane McLelland’s book “How to Starve Cancer” and Kelly Turner’s book “Radical Remission. I later watched and listen to many podcasts with Simon Seifrid. I was getting a good handle on the metabolic influence of cancer and started putting the pieces together of not just repurposed meds and supplements but the impacts of diet and lifestyle. Most recently, I have been very drawn to Mark Lintern’s Cell Suppression Theory. I don’t claim to know it intimately but his book is practical and easy to understand. It really spoke to us.

5. What specific foods did the naturopathic doctor identify as inflammatory for you, and what did you replace them with?

We saw the Naturopathic Doctor late December - chemo still hadn’t started. He recommended and we obtained an IGg/IGa (immunoglobin) report. Although I was not considered celiac, it appeared that various foods were not good for me and likely the cause of inflammation in my body. The foods that scored high as potentially causing inflammation for me personally were: gluten, all dairy, eggs, red meat, octopus, peanuts, almonds, soy, oats, cinnamon. I immediately eliminated these foods and instead replaced them with other alternatives such as gluten-free/dairy free bread and cashew milk. We learned to cook differently and started buying more whole foods. Within a week, I was feeling so much better even though at this point, I was told I was stage IV (multiple liver lesions). I had realized that over all these years, I should have been avoiding these foods given my ongoing digestive issues given how much better I was feeling after eliminating them.

6. Can you walk us through the exact components of your daily adjunctive protocol - supplements, repurposed drugs, timing, and dosages?

Here we are going to cut and paste the protocol Ben was taking while he had active cancer. As indicated, we started with the Joe Tippens protocol and gradually added to it. He was taking all of the following as chemo began in Mid-January 2022:

• 1000mg fenbendazole with MCT oil - 500 twice a day - with meal Tudca - 2 x 500mg capsules per day - 1 morning/1 evening with fenben

• Serrapeptase 1 x 60mg capsule twice a day either 2 hrs before or after eating Boswellia extract - 2 x 333mg capsules per day - 1 morning/1 evening Vitamin B complex - 1 capsule per day

• Vitamin D3 - 2 x 1000 IU capsules per day - 1 morning/1 evening Omega3 - 2 capsules per day - 1 morning/1 evening

• Cod liver oil - 1 capsule per day

• Thera-Curcurmin - 2 x 500mg capsules per day - 1 morning/1 evening Melatonin- 10mg 2 times a day - 1 morning/1 evening

• Quercetin - 2 x 400mg capsules per day - 1 morning/1 evening Berberine - 2 x 420mg capsules per day - 1 morning/1 evening Artemisinin 100 mg x2 - 1 morning/1 evening

• Turkey tail capsules - 2 x 550mg capsules per day - 1 morning/1 evening Reishi mushroom extract - 2 x 250mg capsules per day - 1 morning/1 evening Broad spectrum CBD - 1ml at Bed

• Lots of green tea

• Regular Intermittent fasting (ie don’t eat after 7pm or before 11am)

• Fasts 32 hours during chemo (starts night before and goes to day after chemo)

• Stops fenben and all supplements while fasting during chemo.

Ben’s Personalized Diet: gluten and dairy free, no eggs, no red meat, natural sugars only, lots of fish, no peanut butter, no almonds (diet based on personalized IGA/IGG blood tests done and interpreted by a Naturopathic Doctor for food allergy/sensitivities).

Currently, Ben takes a maintenance version of all of the above. We do not have a specific schedule. Basically he takes everything but takes less and spreads out through the week (ie, 222 mg of Fenbendazole 3 times per week). We have also implemented the occasional Ivermectin dose.

7. Your liver lesions disappeared after combining chemo with your protocol. What was the specific timeline, and when did you first see measurable results?

Here is the timeline from my diagnosis to the present:

https://psp.sendowl.com/s/health-and-wellness/cancer/rooted-in-hope-the-space-between-stage-iv-cancer-and-no-evidence-of-by-the-rooted-misfits

Coupon code: 2ece5791c4

8. Post-Whipple surgery, what are the permanent digestive changes you deal with daily, and how do you manage them?

As I have been told about ⅓ of my pancreas was removed along with my

gall-bladder, my body is no longer producing enough enzymes to break down and absorb the nutrients of my food. I have been taking the medication CREON to help offset the digestive issues caused by the surgery but it continues to be a balancing act. I am getting better at dosing depending on the timing and food I eat but it is not a perfect remedy and is still a challenge finding this balance. If I eat the wrong foods or do not take enough creon, I get what they call “dumping syndrome”, where basically my food speeds through my digestive tract without being broken down and absorbed properly and results in many painful bathroom breaks. Also, because a part of my stomach and digestive tract was removed, mechanically, things do not work the same. During my surgery, they had to create a “flap” that goes directly into my intestines from what’s left of my stomach and this causes issues too. Often I get what they call a “Whipple attack” which is when my food gets stuck in this new flap and causes immense pain. When these attacks come on, I have to immediately lay down and wait for it to pass. I am also more tired since cancer, and I believe the rearrangement of my digestive system is a main culprit (lingering chemo effects have an impact too). Ultimately, I always need to be close to a bathroom or have the ability to lay down if I need to. I also take a nap or two every day. These are the main reasons I can no longer work.

9. You continued working in trees during treatment. What guidelines did you follow to stay active while managing fatigue and chemo side effects?

The guidelines I followed really depended upon the type of treatment I was receiving. Initially, after my first hospital stay but before chemo, when I was feeling much better due to the stent being placed to alleviate the pressure from my tumor and my change in diet, I felt good most days. Although having suffered through the symptoms for so long and resulting weight loss, I was certainly not where I was a year prior, however, getting out and climbing trees felt good, both physically and mentally. It was at this time, I was winding down my business and getting ready to sell it so I wasn’t working full time anyway. Basically, I did what I could, when I could. I was fortunate that most of my customers completely understood. Chemo started in mid-January and by this time, plans were well under way to sell my business to one of my employees. He was gradually taking over and wanted me to stay on as a consultant and to do work when I was feeling up for it. This was the perfect situation for me as the pressure of running the business had greatly reduced but I knew I could get out anytime I wanted to. It also helped that I was providing a lot of advice to the new owner so it kept my mind occupied. The chemo I took the first time around was Gemcidabine/Abraxane. Like many chemos, it had a cumulative effect where it took me longer to rebound after each treatment but overall, I felt I was dealing with it quite well. I did experience some nausea and tiredness but because I stayed active and did my fasting during chemo days, I feel like this really helped me with the side effects. I didn’t have to take the nausea meds they prescribed me. I ultimately lost all my hair but this didn’t bother me really. During this period, I got out and climbed trees as often as I could. Even though it was winter, I always felt so much better physically and emotionally after getting out there. Everyone was amazed but after everything we learned, I understood how important it was to keep moving and continue to do the things that brought me joy and this was climbing trees. I honestly believe keeping active in trees and keeping my mind occupied really helped get me through chemo and prepared me for surgery which I wasn’t even supposed to have given my stage iv diagnosis.

Ultimately, because of extremely improved scans (my liver lesions “mysteriously” completely disappeared and my tumor shrank), they reconsidered me for surgery and booked it for the next month. I had a 4 week break in chemo before my surgery between May and June and resumed my activity as best as I could to prepare for surgery. When I had surgery in mid-June, that was obviously a bigger challenge to cope with given the extensiveness and evasiveness of it. However, they were surprised to discover I had clear margins and the doctors were amazed at how well I was recovering. 24 hours after my surgery, I forced myself out of bed, even just to stand and shuffle around my room. I knew it was important to try and get moving. By the end of my hospital stay, I was walking multiple kilometers up and down the hall ways. I was released after five days and was barely taking any pain medications.

Obviously I couldn’t climb trees right away, but I continued keeping my body moving while recovering at our cottage. I was able to drive my tractor around and work on our campground - that kept me occupied and helped mentally as well. After six weeks, I went to see the surgeon for my check-up. She was impressed with how well I was healing. She told me I was now able to lift 10 pounds. The very next day, I climbed a 60 foot pine tree just for the heck of it. It likely wasn’t what my surgeon had in mind but it was so important for me to get back to doing what I love. Obviously, I had to be extremely careful and take my time as my strength wasn’t there like it used to be but just the simple action of it all gave me a huge boost. Over the summer, I reimplemented my protocol and got stronger. The pain dwindled substantially. At the end of August, I started a post-surgery chemo regime. This time it was Folfurinox.

This one really was much more difficult from the first. First of all, it was a combination of 5 different chemos, second, my body was still healing from surgery and the past year of dealing with cancer in general. I struggled keeping up with my protocol due to extreme nausea but I took it when I could. I also stayed as active as I could despite feeling much sicker than the first chemo. Neuropathy was also getting worse with each treatment and I struggled with pain in my hands and feet. It also took me longer to bounce back in between treatments. However, I was very fortunate that because my scans were clear and my CA19-9 numbers were well within normal range, my Ongologist decided to end my chemo early (I had 8 of the 12 planned cycles).

10. For someone just diagnosed with Stage IV cancer, what are the first three practical steps you’d recommend they take?

1. Learn everything you can about your disease and reflect on how your previous lifestyle may have impacted it. How was your diet? How much stress were you under? How much physical activity were you getting? Reflect on your substance use. Usually, there are things you can identify that likely didn’t help your immune system stay at an optimum level. Change the obvious things to the best of your ability immediately. Your mind and body will thank you for it.

2. Surround yourself with a good support system. Lean on friends and family. Take them up on offers of help. Find an oncology team you can trust.

3. Do what they say and get your affairs in order - Don’t think of this as a sign that you’re not going make it but we guarantee the relief you will feel when you know everything will be taken care of, if the worst does happen. To be honest, this was something we should have done long before a cancer diagnosis.

11. Which scientific studies or research papers were most convincing in shaping your protocol choices?

We have several in our records that influenced our choices, however, the following were a few key ones that gave us confidence to start an adjunctive protocol:

https://www.oncotarget.com/article/28014/text/

https://www.nature.com/articles/s41598-018-30158-6

https://www.sciencedirect.com/science/article/abs/pii/S0944711318305075?via%3Di hub

https://pmc.ncbi.nlm.nih.gov/articles/PMC6680685/

12. You’ve met many cancer patients who’ve succeeded and many who haven’t. What patterns do you see that separate the two groups?

The ones who have succeeded took a whole health approach and understood you have more control over your situation than many think (or are told) they do. Standard of Care is only one of many pillars you can utilize to give yourself the best chance at long-term survival. Ultimately, the ones who have succeeded took advantage of non-invasive adjunctive therapies even if their medical team didn’t approve of some. Walk us through a typical day now at Owl’s Hollow - how do you balance running the campground with maintaining your health protocol?

As indicated, Ben no longer runs his tree business. He sold it when he was diagnosed with cancer. He does still help out the new owner from time to time but for the most part he is retired. He spends most of his time now at the lake with me (Karen) working on projects, renovations and climbs trees when he feels up for it.

Ben manages his maintenance protocol and remains committed to his diet and lifestyle changes.Two years ago, I took a voluntary demotion so that I could work remotely from the lake and support Ben more closely. We’ve obviously taken a hit financially but we are making these changes so that we can focus on living simply while Ben continues to recover. And frankly so I, as the caregiver, can also recover from our ordeal. It’s been so worth it. I am currently on an unpaid leave of absence so that I can manage the campground during this busy season and work on developing our blog, ebook and our online presence. Otherwise, we couldn’t have made lift-off with our blog and expand our advocacy work. We would like to see a day where Karen can retire from her job and focus her time and energy toward our new priorities.

13. Your e-book costs $15 CAD. What specific protocols, dosages, or resources does it contain that people can’t easily find elsewhere?

All elements of our protocol, doses and resources can absolutely be found elsewhere. However, it took us many months, days and hours as well as a strong commitment and desire to dig deep, compile and then feel confident in the research, sources and ultimate protocol we relied on. As we are on several cancer platforms sharing our story, we have had many people contact us from all over the world asking what, specifically, we have done. While we were sharing our protocol on its own, we were not comfortable with the fact that no background or context was being provided behind why we did what we did. It was a lifeline but with no context. We were afraid people would blindly implement it without doing any research. We couldn’t possibly spend the hours required to have conversations or answer questions from everyone reaching out but at the same time, we wanted others to know there is hope! Our ebook not only shares our complete story, timeline and protocol but it includes information, resources and our thought processes on why we made the decisions we did - all of which we believe are extremely important for patients to understand before diving head first into any protocol whether standard, adjunctive or alternative. Although we have been accused of doing so, we are far from seeking to simply make a profit from other’s desperate situations. Instead, we look at it like any other author or story teller wanting to help others and then publish their written work for a fee. I (Karen) took an unpaid leave of absence this summer to work on making our official online presence by creating our website where we provide many insights for free and then our e-book so we can continue helping others. Ben and I are fierce advocates for cancer patients. We raise and donate money when we can, volunteer on various committees, participate in fundraisers, are involved in research and we are committing to donating some of the proceeds of our ebook to cancer research. The fee for the e-book also will help sustain us financially so we can continue to help others. Ultimately, our thought process is “help us help you”. We’ve been there. We know the feeling. We wish we had an honest resource that was written by someone who lived and continues to live with a Stage IV cancer diagnosis - both as patient and caregiver. The important thing is that we believe our ebook says all the things we want to say to others on this cancer journey to give them hope when we don’t have the time or resources to sit down with each of them individually to share this hope. As we gather feedback and learn more, the ebook will be updated. Purchasers will be notified of any updates and they will be able to download the new version for free.

14. For readers who want to follow your journey or potentially book a stay at your campground, how can they connect with you?

We have only recently made our official presence known online. We are on most social media platforms as “The Rooted Misfits”. We also have a blog on our website: www.rootedmisfits.ca that we update frequently, not just about our cancer journey but other topics that are fun and lighthearted like our diy projects and stories about our rescue beagles. Readers can also email us and we will do our best to respond. We will be welcoming feedback from other patients and their caregivers as it will help us provide content people are looking for. We are just beginning this online presence and we still have a lot of learning to do. We are open to hearing from others, their stories and any wisdom they are willing to share.

Our campground is called Owl’s Hollow Eco-Therapy Camping. It has a Facebook Page. We are located in Central Nova Scotia. This is our third season operating and we enjoy hosting people from all over who are looking to camp off-grid with some extra comforts. They overwhelming appreciate the space and the service we provide. All information about Owl’s Hollow including availability can be found on Airbnb or Hipcamp.

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