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Den went for his second CT scan on May 1 and he’s made a video about what they found. Pretty incredible stuff.
Our next PET/CT scan is booked for 6 weeks – what is THAT ONE going to say?!
Thank you for sharing our journey with us. We will keep you posted!
Love. Den & Cala xoxo
Dr. Seyfried is right: Cancer is a metabolic disease.
For months my mission has been a simple one: save Den, against all odds. But now that Den is beating the odds (thanks to what we’ve learned about the metabolic approach to cancer,) we’re turning our attention to something new: teaching others how to beat the odds and find their way back to health too.
We’ve been busy developing the platforms, the models, the video scripts to start rolling out the protocols, implementation guides, step by step approaches and educational sound bites needed to bridge the gap between why to take the metabolic approach to cancer and how to implement the protocols required. Our ultimate goal is to remove as many barriers as possible so that a metabolic approach to fighting cancer will be a commonplace option worldwide.
Den will be starting to publish his own story and successes, his protocol observations, and details about his recent work with the team at Boston College and Hippocrates Foundation. Once we have our next scan results in the beginning of May, you will start to see these enter the scene through his efforts ‘Metabolite’, a YouTube channel, due late spring.
I will be continuing to document, create and catalogue the framework to implement how this can work for everyone in their everyday lives. Through Self Rescue Society, we are working with people with recent cancer diagnosis and their support teams.
We’ve been asked by many of the people we’re helping to give a week-by-week timeline since Oct 9th, to get a better sense as to how much time was given to research, add clarity to the momentum of getting this protocol together, give insight into the roller coaster of getting started and when they could start to see results.
This exercise of recounting and detailing our lives for the last 26 weeks has been wild to say the least. I hope it helps to paint a picture of the process for those of you interested.
Week 1 | Oct 9th We went into the emergency room on a hunch and discovered a ‘Pulmonary Artery Intimal Sarcoma’, as the primary location of this rare and deadly Cancer in the heart with a metastasis already found in Den’s right lung. Den was put on palliative care with days to live. We got married in the back gardens of the hospital and then were given the gift of a possible life-extending surgery by our medical team.
Week 2 | This week had us waiting and preparing for surgery, waiting for a human donor pulmonary artery, trunk and root to arrive from the east coast. A first-of-its-kind surgery was successfully performed on Den and we got him back, if for only a little while longer.
Week 3 | Recovery from this open-heart surgery was traumatic for Den and they finally released him to me from the hospital five days later, with extra strength Tylenol and a prayer.
Week 4 | Our new reality at home included 24-hour pain management and re-learning the basics of day-to-day movements. I learned the real definition of caregiver, support person, nurse, wife and mother.
Week 5 | This was a big week. We had our initial meeting with our oncologist, who laid out our Standard of Care treatment options to start fighting the tumor in the lung and the remaining circulating tumor cells present in the heart. As the treatment is specifically toxic to the heart, it was unknown if it would be successful or cause additional damage. What was clear to us was that Den couldn’t start chemo for at least another three months as his heart was still adjusting to new tissues, transplant and swelling. We got the signoff that the metastasized tumor in the lung wouldn’t be threatening in that time. Our oncologist was open to letting us try fasting as, even he agreed, it had been known to show great benefits to people in Den’s situation. So, with that nugget of information, we went home to gather our wits and do some research.
Week 6 | I called in a close friend to help with tending to my messy heart, our messy house and our new health struggles. I really felt like I was drowning, and I learned a valuable life lesson: that support people absolutely need support people. What a gift this was as it allowed us to take a deep breath and think about what to do next.
Week 7 | This was the week that changed everything. Den now had enough energy and clarity to understand that we had been bought some critical time while he waited for chemo. He devoured a book a night and we made calls to clinicians and programs worldwide, trying to find the evidence of something that might work for his situation. We started to understand cellular biology, how metabolism and autophagy works and started to strategize about what the next six to eight months might look like. We came across the work of Dr. Thomas Seyfried and his theory that Cancer is a Metabolic Disease. We reached out to him at his office at Boston College, were successful in getting an email address for him and wrote him, hoping for the best.
Week 8 | We got the best. The response from Dr. Seyfried provided all the information one could want to research further into the science of metabolic disease. It also included a referral to a clinician team that he works closely with at Hippocrates Research Foundation. It was this experience, of being able to call the people at Hippocrates Research Foundation for help in our darkest time and have a response not only available to us when we needed it, but at no cost that truly changed our lives forever. The relief of working with such a knowledgeable and compassionate team of people was palpable and, wanting to extend that same feeling further out into the world, we decided to dedicate our lives to the same cause.
Week 9 | This week was absolutely nuts. We started Den on a keto diet and dealt with the trials and errors that come with transitioning from a glucose metabolism to a ketone metabolism. We learned what GKI was, implemented a fasting schedule and then just when we got everythingn in motion, Den got a terrible respiratory flu. As you can imagine, since he was still recovering from having his chest cut in half, this halted everything. I spent days hovering, watching, assessing, obsessing, and researching, but we found our way through, and I found my feet and started this blog.
Week 10 | We were in full swing collecting the supplies we would need to execute our own press pulse protocol at home. We were now working constantly with the Hippocrates team who, in turn, were working closely with Dr. Seyfried’s team at Boston College. We were getting the hang of a keto diet and started going through a LOT of olive oil and butter.
Week 11 | Den saw the emergency room this week. Post surgery complications were potentially devastating, and we weren’t taking any chances. New CT scan results from this visit informed us we might be also dealing with a pleural effusion but we were sent home without much explanation and with no further direction.
Week 12 | Once the final equipment and supplies arrived, we got to work starting our first press pulse protocol. We managed to locate a facility about two hours away and started driving to hyperbaric oxygen therapy (HBOT) sessions three times a week. The January snowstorms rolled in this week, and we really got to know the backroads of Duncan well. We were excited by the beauty of possibility as we instinctually knew this was the right way forward.
Week 13 | This week, quite frankly, rocked us to the core. A very dear friend in the UK reached out to tell us that a close friend of theirs had just been diagnosed with the exact same thing as Den. This rare sarcoma, made even more rare by its location and complexity, had found itself another mid-40’s male to pop up in and through one degree of separation no less! After recovering from the initial shock of this news, we became even more determined to prove out the results of Dr. Seyfried’s protocol. We weren’t just doing it for ourselves anymore.
Week 14 | Our second press pulse protocol was now underway which was new and a bit unnerving. Each protocol is roughly a month long, with travel back and forth from Duncan, preparing for our next scan, set for Jan 26th.
Week 15 | This was game time. Den went for his MRI/CT scan, a scan that would determine our future and the future of our children with his first protocol under his belt. To try to describe the nervousness here would be silly. By this point, week 15 of what I would call a Hercules-meets-T-rex-type of battle, everything was riding on these results.
Week 16 | This week, we had results. Our oncologist revealed that not one but two pleural effusions around Den’s heart and lung — pleural effusions we did not even know he had – had resolved without medication since our last CT scan. In addition, the sarcoma tumour in the lung had shrunk by 50% in just four weeks. We were taken off the chemo list and told to keep doing what we were doing. Even though they didn’t understand what had happened, we sure did. Cancer is a metabolic disease and through the right metabolic therapies, you can rescue yourself and thrive in the process.
Week 17 | Personally, this was the week I worked to pry my hands off the wheel I’d been white-knuckle steering since Oct 9. I free-fell into bed and slept for the next eight weeks straight. Relief felt like high-dose valium, and I was exhausted, from cell to soul. I turned my mind to healing my own body with the same metabolic strategies as Den. I quit alcohol, transitioned to a ketone metabolism, implemented fasting and started taking this thing we were doing for Den seriously for myself. His cancer fight could be my cancer prevention.
Week 18 | We celebrated Valentines Day with a hike back at our favourite place, Mount Doug. This was a monumental day as it was the last place Den and I had hiked the day he went into the hospital, and it was just what the doctor ordered. In fact, it was exactly what the doctor had ordered: Den was now allowed to put his new heart parts to the test by walking on inclines.
Week 19 | We jumped into our third protocol. We ordered more supplies and started working together to come up with strategies to assist others if they chose to implement this framework into their lives. The framework would need to be flexible, adaptable to varying lifestyles and bio-individuality measures. Budgets, timelines, meal planning, monitoring: all had to adjust slightly for each user. No sooner had the concept been discussed than the phone rang with another case of Pulmonary Artery Intimal Sarcoma, this time here in Canada.
Week 20 | This week we learned that the challenges, successes, daily routines, findings, adjustments and observations that we’ve documented are being catalogued and reviewed for submission into a scientific journal, through our clinicians and Dr. Seyfried’s team at Boston College. Make no mistake, we are currently doing our own human trial. We decided to take it upon ourselves to help pioneer this paradigm shift so that others can one day can follow a map back to health.
Week 21 | This week, Den created ‘Metabolite’ and his plan to bring this Cancer education to the world was born. Den, has committed to finding ways to break down the science and offer it to the world through various learning strategies. As you need a fairly robust comprehension of science to process how to save your own life, it occurs that we, as we go through it ourselves might be able to help bridge the gap between the what and the how.
Week 22 | This week Den became hyper focused on the science of cellular biology. He was interested in knowing how press pulse protocols work down at the cellular level, how hyperbaric oxygen works in the body and how we might be able to mitigate some of the side effects for future users who decide to do their own metabolic protocols. This diagnosis has been a rare opportunity to help pave the way for new science and he has discovered new ways to implement the protocol to mitigate some of the symptoms that come along with glutamine restriction.
Week 23 | This week had us talking to the third person with Pulmonary Artery Intimal Sarcoma. This time a female in Boston and now this felt a bit dizzying. How many more were we going to find? Each new friend had a wild and terrifying story behind them. Some had already been ravaged by chemo, only to have new tumors return. Another was starting immunotherapy, and another was weighing options but had lost a spouse to cancer which made the process even more excruciating.
Week 24 | Finally, after about eight weeks of pure exhaustion, I got my mojo back. I was able to craft, refine and plan my next venture. As my design and build company ended with the pandemic and our family crisis, I transitioned into a new reality and one thing was made evidently clear to me – Victoria needed an accessible, affordable, modern hyperbaric oxygenation centre. As this is such a critical piece of the press pulse protocol, overall health and the answer for numerous metabolic diseases and diagnosis, it made sense to make this available to the community so that they can actively have the tools to rescue themselves if need be.
Week 25 | This week we started our fourth and last protocol before our second scan on May 1st. Through Den’s recent experiences with the press pulse protocol, he’s starting to refine, innovate and document new practices and even suggesting new treatment strategies. He is proving out these new practices on himself first, with assistance from the clinicians and scientists on his team. He shares all of his data with the team at Hippocrates and Dr. Seyfried’s team who can publish it or pass it on to other clinicians and patients who can directly benefit from it.
Week 26 | This week Den met the fourth person with Pulmonary Artery Intimal Sarcoma. We learned that their treatments in chemo and immunotherapy aren’t working for them, and it is absolutely clear to us now what we must do now and always. Den has been given the gift of being able to prove that this metabolic approach works, and we have the opportunity to share this with others, to help them save their own lives like Den has.
As we now move into week 27, things are getting tough on the financial front. We’ve managed to make what little savings we had from the original GoFundMe last six months, all while living with four teenagers, in one of Canada’s most expensive cities, which might just be our biggest miracle yet.
We are very much still in a battle to get rid of a cancer that would in short order kill Den. I believe with all of my being that we will be experiencing “cancer managed “by our Thanksgiving anniversary, but it is going to take a continued Olympic effort.
And there is a bright future here, one where, in collaboration with leading scientists and clinicians, we can bring cancer education that focuses on the metabolic strategies and hyperbaric oxygen therapy to those who need it most right here in Victoria. We imagine a future where we can help people in their darkest moment, and we can offer them the information on how to get back to health, one step at a time. We just need time to keep building it.
I will be starting to publish a lot more as the details roll in now from other Cancer fighters, our scientist and clinician partners, as scan results from Den and questions roll in from our friends and family.
Self Rescue Society is here to stay. I have set up it’s eco system so that it is incredibly easily to follow along, share with friends and support us on our journey.
Fundraising
We have set up our new donation platform called Donorbox, which has two different methods of supporting our cause, depending on what you are comfortable with: a one-time donation of any amount or a monthly re-occurring option for a duration of your choosing.
If you are inspired by our journey, we would really appreciate any support available.
YouTube
We are creating, editing, posting, and pushing out videos for those who might need extra info about how to help themselves or a loved one in need.
Please, visit our channel and subscribe.
Our hope is to reach people, where they are with helpful facts, links and other resources that someone can turn to quickly if needed.
Easy to share with friends and family, this platform will allow us a place to post it all, reaching as many communities as possible.
Give us a follow, and share with your friends and family!
Although I am new to this world, it is a great way to update you on all of the latest and greatest
Keep up to date through our Twitter feed
And last, but not least, we need your feedback. Learning how to bring this data, strategies and guides to as many people as possible means learning where the holes in our understanding are. We ask for your comments, questions and feedback about what is puzzling, unclear, hard, frustrating and in turn, what is inspiring and delivers the right message. This is for people who are going through it, by people who are going through it. This is community care. Help us lead the way!
There is much more to come. I am preparing to post some of the more technical data from the protocol, scan images, protocol details and a resource library. Now that I have my mojo back, you’ll be seeing a lot more of us.
Love.
Den + Cala xoxox
The results are in from Den’s CT scan preformed on Jan 25th. The last CT Scan in early December showed the metastasized Sarcoma tumour in his lung and plural affusions on both his heart and lung.
To say we were nervous is an understatement. Den wanted to share the news himself:
More exciting news to come!
Love; Cala + Den
January was a long year, amIright?!?
Lots happening over here at Casa Stacey, from trips to Duncan for Hyperbaric Oxygen treatments, signing our son up for post-secondary, our oldest turning 18 and further metabolic education and research galore. Mostly there has been the new integration of Den’s cancer into our everyday family life.
Something VERY exciting as well – I FINALLY convinced Den to get in front of a camera to get everyone a video update so you can get the straight goods from him, about what he / we’ve been up to.
And, it goes a little something like this:
A BIG HUGE thank you to Adam Berke for helping us film this and many more to come. Den and I have been working in the background on something exciting we’ll be sharing soon. We think you’ll love it. More to come.
Den + Cala
xoxox
Well, here goes my first attempt at blogging/writing/documentation.
I am doing this for the love of my life, for Den. All my effort, energy, support and unwavering love is directed to my incredible husband as he does the hard work of attempting to beat an almost unbeatable cancer: stage 4 Pulmonary Artery Intimal Sarcoma.
For those of you who know us, this will hopefully pull you closer to us as we embark on our collective Cancer-fighting journey.
For those of you who are new to our family’s story, my hope is that this can be a source of inspiration and/or support and you will join us on our battle.
Our first miracle happened on Thanksgiving. After a hike on our favourite trail to the top of Mt Doug, Den felt a bit more breathless than usual. We thought nothing of it until later that night at dinner with the family, when he went to move a table and felt the same breathlessness. Instinct kicked in and, not knowing why exactly, we headed off to the hospital.
This chance visit and a newly donated CT machine uncovered an enormous mass growing in Den’s right pulmonary artery, leaving only 1mm of space for blood to flow through the heart and into the lungs. We’re talking 4 litres of blood a second, trying to push through the tiniest of spaces.
I will tell you this—I understand now that when they treat you really well in any hospital, this is not a positive thing. We were almost immediately given a room with a view and a couch for me to sleep on. Then, on Oct 10th, we were given the royal treatment and ushered into what I call “the bad news room.”
We were told Den’s mass was a tumour— they thought probably a sarcoma as another tumour had metastasized to his lung. It was stated that any attempt to do anything about it, even to collect tissue samples, would lead to instant cardiac arrest and they wouldn’t have the people or materials to save him. How Den was even alive to hear this news, no one was sure.
We were told the surgery to remove Den’s tumour and buy him more time would likely lead to him dying on the table or spending the last months he had left recovering and unable to live comfortably as we waited for the tumour to grow back. They also thought it had most likely spread into the rest of the heart. The only way surgery was possible was with a donor transplant. It meant possibly flying across the country and, more importantly, we would need a surgeon to sign on for this complicated procedure. At that point things weren’t looking very good, so none were willing. Den was put in palliative care and was directed to say goodbye to our kids, family and friends.
The team at the hospital allowed me to sleep next to Den and we would lay awake at night trying to wrap our heads around the concept of not growing old together after building such a beautiful life together for the last 13 years. Not having grandchildren. Not traveling. Not being able to spend more time in Mahone Bay where Den was raised. Not being able to drive through Italy and France once the kids had flown the coop and we were finally free to roam as we pleased.
It was inconceivable. Unbelievable. Unbearable. We experienced a depth of grief and loss we didn’t know possible.
Over those next few days, we also experienced profound beauty. We witnessed our children showing up with incredible courage, vulnerability and with the particular kind of strength it takes to completely give yourself over to loss and accept a new reality. We were held by our new hospital family of doctors and nurses that cared for us and worked us through this utterly unbelievable thing. We saw to the beautiful core of our family, friends, and community and were the recipients of their utter magnificence and generosity of heart. We read letters and cards and took calls and visits and with that, our lives were forever changed.
We started to live in that beauty—in that pure-love state. It was the first thing we saw when we woke up in the morning. We bathed in it throughout the day and dreamt about it together in the evenings. It acted like a laser light beam, cutting through the darkness. Light, objects, space looked different to us. People felt differently, better, and we started to understand that this pure-love state was the antidote to our fear-poison.
So we decided on the morning of October 13th that we would from now on only do the next most beautiful thing. A bucket list was made for the remaining time we had together and the first thing on the list was to get married. Why not do it that very day?
We had been talking about it for years but when you have 4 kids, are self-employed and your once-small hometown is now a destination city, it is hard to carve out the time and money for such a thing. We wanted natural, intimate, unique but where, when and with who?
We learned that there was a mandala-shaped zen garden, under a grove of Magnolia trees at the back of the hospital, just outside the doors. It was in a private, historical bricked-in courtyard and it was perfect.
After about 100 phone calls and quick errands about town, we had a minister, the license, the dress, the rings and our friends and family ready to meet in the late afternoon to watch us tie the knot.
When everyone had gathered and it was time to get married, the doctor and nurse monitored Den closely as at this point it was an anything-can-happen sort of scenario. The system they had put in place allowed for Den to attend his own wedding but still survive a cardiac arrest if one occurred. In the background of most of our wedding photos you can see a nurse standing behind a mysterious looking table draped in white. It looks a little like a wedding cake but it’s not. Underneath that white cloth is a crash cart.
Then, moments before we were to get started, our doctor bent over Den in his wheelchair to announce his wedding gift to us. In the background, working with a team of others, this doctor had been pulling together the second miracle in our story. Against the odds, the lead surgeon at our hospital down the road, a woman who had been leading cardiac surgery before they allowed women to perform surgeries, had agreed. Her nickname among her colleagues, we later came to find out, is the ‘Original Gangster’. She brought in another surgeon who would be her partner in this life-extending surgery Den so desperately needed as they suspected a transplant would be needed and this type of surgery had not been performed before. She said yes because after decades of successful surgeries preformed, she knew she could.
So, the team of surgeons, doctors, nurses and staff had decided to rally around us and what had originally been a firm “no,” was now, miraculously, a “yes,” After two years of being beaten up by the pandemic, it seemed like they needed a win almost as much as we did.
The local news heard about it and did a small piece about the ceremony, you can see that here: https://vancouverisland.ctvnews.ca/victoria-couple-wed-in-hospital-after-devastating-diagnosis-1.6117524
On Oct 20th, Den went in for his open-heart surgery and after 7.5 hours, with 15 doctors watching and documenting, the talented surgical team removed the fist-sized primary sarcoma as well as the artery itself. They transplanted a new donor pulmonary artery, trunk and valve and patched the surrounding areas successfully. It was only at this point that they finally had the opportunity to take tissue samples. They sent this off for sequencing so we could get to the bottom of what this thing really is.
If you are into this sort of thing – you can see a photo of the tumour in the surgeon’s hand here (link)
What I have also learned about hearts, transplants and complex surgeries is that there is not a proper descriptor for what happens after it’s done. Nervous is not a good enough word to describe the feeling of having a new artery in your heart, wondering if it will take or if it blow out. Anxiety isn’t an adequate word either. 4 liters of blood a second is a lot of blood to process, the new and sustained pressure of every single heart beat threatening all of the doctors’ hard work. They dedicated a nurse to watch Den every moment of the day for a solid three days, waiting for even the smallest sign of distress. I have such a newfound admiration and respect for the nurses, doctors and care staff that we look to, to mend us when we break.
Those days following the surgery had me pacing the halls, waiting for the brief times I could see Den. When I did get to be with him, he looked more cyborg than human man, with tubes coming out of every conceivable place, machines pumping and whirring, and my man, high on Ketamine, whispering about sandwich clouds and card game conspiracies. They definitely gave him a lot of the good stuff.
Eventually, the new artery did take and on Oct 25th, they sent Den home with extra-strength Tylenol, baby aspirin and no bandages. After witnessing the hyper-attentive care of the last 15 days, how they were allowing me to take him home to care for him myself with some mediocre pain relief was beyond me. I have always been more of an Advil girl myself and will admit I had doubts about the efficacy of Tylenol. It’s what I gave the kids when they were sick, not a man that has just been sawn in half!
I am happy to report that after five weeks of two pills every four hours, I will never scoff at Tylenol again.
On November 15th, we met with our new Oncologist to finally understand what we’re up against next with the lung. In this new bad-news room we found out that Den has one of the rarest forms of cancer— a Pulmonary Artery Intimal Sarcoma with only about 100 cases studied and with not a lot of options for treatment. The suggested cocktail of chemotherapy is the most aggressive out there, is specifically toxic to the heart, and may not touch the tumour in his lung at all. We were told the small amount of statistics show only 15% of recipients had experienced any chance of the chemo working. And we were told that if we didn’t do the chemo, our window of time would be short.
So, we’re going for a third miracle.
This next part is big and scary and will ask a lot from us, our family and our friends. We are setting out to create order from this chaos. We have started researching all the things. We have started a routine of diet and exercise. We are making strides to nourish our minds, prepare our bodies and mend our hearts.
For those who know Den, this won’t be a surprise BUT he has the most extraordinary mind and has taken to coping with this diagnosis through in-depth research, digesting medical publications and science findings – everything under the sun that could help. He’s turned into a medical encyclopedia and I have learned new heights of my adoration and love for him. He’s not taking this lying down, that is for certain.
Meanwhile I have been coping in other ways. I have been establishing the command centre, implementing the framework and network that is needed to see us through because I have learned it is a big job to be your own advocate in this health care system. It is like a complicated clock works with many different gears turning and you have to constantly place yourself at the centre to make sure the different parts are working together as efficiently as possible.
This week I start my attempt to pick up some of the pieces of our life that were dropped. I am learning to be patient and understanding with myself because who can possibly know this battle until you’re in it? I have to keep reminding myself that there is no preparing for this. This week I will focus on managing Den’s stress and pain as we start reaching out and meeting with all of the people we have pulled in to help. Like, all of them. I have decided to document Den’s fight every step of the way, detailing our approach to marry Western medicine and Metabolic approaches to save his mind and body from the impact of the most aggressive chemo and radiation. We will be reaching out to top researchers and doctors all over the damned place and weaving a plan together that is intuitive and vetted by our team.
This account feel like cliff notes but truthfully, it feels like that in my mind—like cliff notes of a fragmented, stressful, beautiful, terrifying and inspiring time.
This is a gift to my husband, so that when it comes time he can watch his journey from our perspective. A story of a beautiful man, living in a state of miracle as we work to beat an almost unbeatable cancer.
Come, join us on our journey.
Cala XOXO
Self Rescue Society 
