Experiencing Cancer Out Loud by Ryan D. Luelf
HINDSIGHT IS 20/20
Driving forward by analyzing the past.
Last Fall 2017 Caroline and I sat with a friend and cancer mentor, Theo, to review our cancer journey. We even sent a version of this review as our very first email newsletter/update to our subscribers . . . then we realized that it would fit nicely into Caroline’s blog as it fills in the holes of 2017. So as we edited we realized, Wow! Looking back 2017 was quite the year as we made huge life changes and then I was hit with a recurrence of lymphoma. It is an emotional journey to share all of these details once again.
<<<This ‘newsletter’ was quite lengthy so it has been cut up in two sections. One being The Story of the 2017 Recurrence and the second The 20917 Dream Team (with the Game Plan/Protocol)>>>
As we began to plot every moment we could recollect over the last two years. It would have been easy to say or think that we had made wrong or bad choices along the way. But that is not true. We made decisions each time based on the information we had and the experience or wisdom that was ours from the journey. We made it a point to celebrate the courage we demonstrated in taking a road less traveled or less popular.
This approach relaxed our systems and our minds. We started looking for pearls and precious learning that might be just out of view. We unpacked and unfolded a lot of emotions that surrounded difficult times. There was significant reward in reveling in the wins.
PLAY BY PLAY
We have decided to just share the hits, tackles, catches and completions as though this was like watching game films together with you after a big event. The format is simple. It is a lot of moments. But each layers on the next to paint a picture and complete the puzzle. There is so much to share, that we are going to try and focus on highlights. We will continue to analyze the data and develop conclusions. We will share those as we find them and test them.
STAGE FOUR TO NO MORE
We received the great news that Ryan’s PET Scan showed no malignancy. It would have been great if the healing journey ended that day. But it didn’t. It is a huge and important victory, but there is always more to learn. And we continue to learn so much, still!
HUGE AMOUNT OF STRESS
One event, then a second, then a third. We believe that stress sets the stage. We were proud of how we handled all of it. But there were many days that were overwhelming.
Late February into Match
The pain was excruciating. I had been feeling so good for so many months. I was back in the gym and putting muscle on! The hernia started on the right side. It is called an inguinal hernia. If you have suffered recurrent or chronic ascites, you might want to go slow, even if you feel amazing. You have just been to hell and back and the body and spirit are still trying to synchronize.
LET’S HEAL THESE HERNIAS
I started several natural healing therapies/exercises for the hernia in attempts to avoid surgery. It was our wish to forego any surgical procedures and heal without surgery. April 21st a hernia popped out on the right side. What the heck? It started to threaten to strangulate. After five hours in the ER it finally went back in. A few days later I was admitted for double inguinal hernia surgery. NOTE: the hernias were located at the same places where large tumors had presented the previous year. That will scare the bejeezus out of anyone. Not sure what the relationship was, but there might be an important one.
– I would have liked to avoid conventional surgery and hospital stay. This was a tough choice –
End of April into May
STRUGGLING TO RECOVER
Recovery was difficult and I have never felt the same since. My blood work was whacky. Caroline has become an amazing partner in this journey. She was watching highly fluctuating white blood cell counts and then observing them fall and stay low (including neutrophils).
AN INCESSANT COUGH AND A MAJOR TOOTH INFECTION
Around May 8th I developed an incessant hacking cough. Caroline expressed a concern that my belly had some minimal, but new distention. About that time my tooth started to hurt. Pretty soon my whole mouth. May 17th I was diagnosed with a large abscess tooth. It was immediately extracted. Coincidentally, the meridians for that molar linked to the spleen, lungs and large intestines. Within a few days I am telling Caroline that my breathing was clearer and much improved. The distention of the belly seem to decrease.
– I went to California for my Dad’s brain surgery. The trip was wonderful on so many levels. But stress has reared its ugly head again. At the time, I thought it was surprisingly a low stress experience. But looking back I realize that we have some interesting ways of packing away things.
BACK IN THE CARE OF MY NATUROPATH
I increased my visits with the local Tulsa Naturopath (Dr Michael Taylor of Marion Medical) to aid with recovery. Inflammation levels were high. These were attributed to surgery from April. Homocysteine levels were elevated. My TSH levels were too. My white blood cell counts were low. Red flags rising. Caroline and I decided to increase my supplements and IVs again.
End of May
LET THE LABS BEGIN
RGCC Oncoquick (Greece Blood Test) and the Nagalese tests were ordered, RGCC showed CTC numbers had declined again. They looked like this:
June 2016: 7.7
Dec. 2016: 6.9
June 2017: 5.4
On the right path, but also a realization that cancer was still lurking in the background as normal levels should be at 3.0 or less. The Nagalese tests also showed a number under the cancer threshold, but still too high at 2.0.
DOUBT CREEPS IN
Thoughts of recurrence were lurking in our minds. A statement from the surgeon back in April never left Caroline’s mind, “Follicular lymphoma is like a bug that never goes away, it is always, at the very least in the background, hard to kill and will show up again.”
I am feeling better, but thru this process lymph nodes had popped out under my jaw and the swelling of the right inguinal area never did go down.
IV therapies continued including GcMaf shots 2x per week were started. Additional lab tests showed Magnesium levels had gone down and the zinc/copper ratio was way off. Zinc was on the lower spectrum of normal and copper being on the high end of normal (these should be fairly equal). Vitamin D levels, while still in ‘normal’ range had dropped by 30 points. Caroline was baffled as to how this was possible. Ryan drinks Magnesium, we use magnesium oil on his skin and he often sits in Epsom salt baths at this time. Something was not adding up. With all the supplementation and high nutrient plant based diet, these results did not make sense.
LIVING THE RV LIFE
We left Tulsa in the RV feeling pretty good. I even played a little bit of tennis the week prior (I took it easy but was happy to be on the court again). Even though there were concerning signs, overall well being was improving and a positive outlook on life. It is time to take our family to our next adventure: Full time RV Traveling!
TYPICAL VISITS TO CHIPSA
White Blood Cell continued to stay low despite all efforts to increase it naturally via food, supplementation & GcMaf. While at Chipsa, Ryan was administered Immunomax and Coleys along with GcMaf (we get GcMaf from our ND in Montana). On July 9th Ryan had a reaction to an increased dose of GcMaf. His right leg became swollen and filled with edema, the sites were the GcMaf was administered became red and patchy and his ankles popped out some nasty blisters. It was evident something was truly wrong with my lymphatic system as this was some kind of over-reaction.
After the lymphatic system episode we decided I would stay in Tijuana at Chipsa and do outpatient treatments. These included Vitamin C IVs, Laetrile IVs, Immunomax Injections, Coley’s Injections, Hyperbaric Oxygen Treatment (HBOT), Sauna, Massage Therapy and of course lots of green juicing and supplements.
July 18th: PET SCAN
We opted for a PET Scan as we needed to know what was truly going on inside Ryan’s body. On the 20th we received the results. We were not surprised, but were definitely let down by the obvious recurrence. On a positive note the largest tumor cluster in the abdomen was only 5cm in contrast to as large as 16cm the previous year. There was malignancy in 6 areas of my body, Several of these were new areas. The PET Scan did show some accumulation of ascites (fluid in abdomen), but I wasn’t really bothered by the fluid at that time.
– It was a tough week for both of us. We were facing Stage 4 cancer AGAIN –
We sat there with a new reality. This Puzzle we call Cancer seems bigger and more complicated than we had initially understood. Caroline was really feeling that we had not figured out all the underlying root causes and hernia surgery in April opened the floodgates for cancer to proliferate again.
– Listen to your instincts. They are like special gifts, but require practice and mastery –
We had been trying to connect with Theo and Kimberly Hanson all year. We were set to come out and speak at their event in Costa Rica (www.CancerUnplugged.com). The hernia and surgery derailed those plans. Social Media can be such a blessing. We realized that we were all in San Diego at the same time. So we had them come and hang out with us at the RV and had a great time. Theo mentions a concern he has about SIBO or some other kind of bacterial or fungal overgrowth. Strange. Not sure what made him bring it up. It was like a last minute comment that seemed random and even kind of out of context.
IT IS ABOUT TO GET WEIRD(ER) FAST
-One of the Directors of Chipsa opens the conversation to include a top Oncologist based in Santa Monica, CA, and suggests we consider meeting with him. I have always felt the genuine support and care of staff and the Directors of Chipsa.
-Aug 7th Usual IV’s at Chipsa
-Aug 9th I had my second dose of Coley’s Toxins. I was on a 3 week treatment protocol with one injection weekly.
-Aug 11-12th Traveled to attend an amazing event that Rob Bell put on. This guy is one of my favorite people. I am feeling physically uncomfortable, but I am emotionally pumped!
-Aug 14th visited to Chipsa for 4 liters to be drained. Holy shit! What is going on? The fluid is milky white, protein dense, and high in triglycerides and albumin. This is not good.
-Aug 15th Headed to Los Angeles to meet with the Oncologist. It was just supposed to be a day trip, kind of an out and back trip…..or so I thought. We were meeting with the Oncologist to discuss all options. He is an integrative oncologist and we wanted his opinion on the situation. We wanted to explore any emerging immunotherapies. And we wanted to have the wisdom of a ‘state-side’ oncologist so we could cross check a variety of opinions and strategies. The Oncologist was amazing. He was kind, thoughtful and was genuinely interested in our journey. He made some recommendations and suggested we think on them.
Massive fluid is building up again while I am there. I had just done a paracentesis the day before! What is going on? The oncologist is getting very concerned. Next thing I know I am in the emergency room. I am freaking out. The pain is increasing and the medical staff is running around talking about emergency chemotherapy?? My abdomen had become very tender. I had large masses swelling up on my rib cage and then towards my arm pits. These were large, kind of firm and soft at the same time. The doctors were concerned about sepsis. The fluid from the paracentesis was again milky and indicating some serious things were happening. A second oncologist was brought in for an opinion.
Caroline and I just couldn’t get our head wrapped around emergency chemotherapy. We avoid making decisions from a place of fear. That can be tough sometimes. It is extra tough when medical staff are saying words and phrases like “triage”, “life threatening” and “palliative care”. But both Caroline felt the same…slow it all down.
The hospital ran a whole battery of tests and scans. Surprisingly, my WBC was holding steady. Caroline had made it her personal mission for the last month to get my immune system markers leveled out and in range. She had been able to work with Chipsa to get those up for the last two weeks straight and they were holding.
-The late evening of Aug 15th They moved me to the hospital.
-In the morning of Aug. 16th I reached out to Theo and sent him photos. He had a hunch he might have an insight. He was sensing viral or bacterial, but not specifically cancer related. He asked several questions about recent treatments and challenges. He came back about 20 minutes later and strongly recommended discussing a specific antibiotic that might address the bacterial infections he suspected. Caroline moves into action mode and she finds the charts and confirms that the Doctor selected same antibiotic. Caroline then asks that I start on IV antibiotics and the doctors quickly obliged.
I quickly respond to the antibiotic. I begin to stabilize. The hospital ran a bacterial lab and it eventually came back negative. Still not sure why the antibiotic worked or what it worked against. But it seems to have been an integral part of stabilizing. I was feeling so much better and the crazy swelling started reducing. But now I have this kind of weird lymphedema. It is like a bunch of fluid in my body is pooling to the lowest points.
-Aug 17th I am discharged and headed back to basecamp (the RV). We get back to find out that our bikes had been stolen. Do I freak out and feel like a victim or choose a different perspective? I did have some crazy lymphedema. All the water goes down to my waste while we are driving back to San Diego. I arrive home with a healthy Kardashian style butt and no bicycles.
LATE NIGHT DEEP DIVE
I asked Theo to come and meet with Caroline and I. We have had the pleasure of working with a lot of people. Many of them have been pretty amazing. We enjoyed the little bit of time we had spent together with Theo and Kim. And we really felt like their “come-from” was awesome. I wanted to hear his insights and views on my condition. I had already seen his accuracy in pinpointing a cause and heard his concerns about the popular “alt” approaches. He is knowledgeable, but not stuck trying to prove something. And he naturally wants to collaborate and share. I can’t tell you how many people Caroline have met that are positive that their way is the only way or that this herb, supplement, tea or tincture cures cancer.
We sat down and started discussing the journey. Our meeting started at 8pm at night. He and Caroline spent nearly 5 hours plotting all the treatments, symptoms, good times and bad times. It was eye opening. There were patterns and learnings throughout. I was pumped. We talked about how at each fork in the road a unique decision had to be made. There was this incredible consensus on the beauty of the journey and all the wisdom gained. Wow. What a week. Caroline and I discussed it and the next day we asked Theo if he would consider joining our cancer team and take a powerful role.
A NEW PLAN
Theo put a whole plan together and sent it over. It was awesome. He still hadn’t said yes to the offer. He shared his concerns and we shared ours. He gave us a number he wanted for 30 days of intense support and participation. Caroline looked at the plan he had already sent, the way he had shown up, and the value we had already received. You have to remember, he has already proven he can help people find their way from cancer to no cancer. We decided it made sense and we engaged him. It was a great decision to have his nearly undivided attention and leadership. It was an investment and I am glad I made it.
It is important that people know how bad it had become. I had literally no room in my stomach for food. I was in extreme discomfort and pain. I was exhausted. I am being tapped via paracentesis two times a week now. Despite all that, we had a plan.
I am so thankful for the amazing staff and support I am able to get at Chipsa. I shoot down there with Caroline and have a paracentesis done. Chipsa uses a really good Ultrasound Radiologist that assists their Doctor. The Ultrasound Radiologist expresses concerns. He estimates that the mass in the peritoneal has nearly doubled in just the last few weeks.
-This is stressful. I am building a new and exciting team, but am I doing it too late? Everything had accelerated to dire and life threatening in just a matter of weeks. I am looking at all the data and advice from a myriad of respectable authorities. I can see that Caroline is really concerned. I am concerned. I make the decision that I am going to include the conventional oncologist and move forward with a treatment plan in Los Angeles. Wow. This is heavy.
-How do I tell Theo?
-How will this impact all those that I have shared with?
-Am I making the right choice?
I call Theo up and tell him of the decision. His response was incredible. What a friend. He encouraged me to let go of attachments to stories, brands, missions, movements, dogmas and a sense of duty to others. He shared the importance in being at ease with yourself and your decisions. He offered to support me in whatever decision I made, but encouraged me to make decisions that harmonized with whatever my instincts directed.
I love his ending statement:
“We will adjust the sails….” – Theo Hanson
Dying to be me – Anita Moorjani
I had read this book awhile back. The image of the cover just coming back to me. If you haven’t read it, you might want to consider it. At a time when we didn’t know why things were escalating so quickly, this book has a way of putting one at ease.
This day was a little different as I agreed to start chemotherapy/immunotherapy treatments . . . for this part Caroline will share her experience.
I drove us to Santa Monica. Ryan uncomfortably sat on the passenger seat with a belly full of fluid and pain throughout his body. My brain still couldn’t grasp how quickly and advanced the cancer had become. Here we were driving to the first chemo and immunotherapy treatment and I was nervous. He wasn’t nervous, but he wasn’t excited either. This wasn’t in our original plans, but we are not willing to ‘die to our beliefs.’ I have always wanted to remain open to everything the world offers and here we were.
We arrived at the hospital and proceeded to the basement where the oncology office welcomed us with a sympathetic smile. Ryan had labs drawn and then we met with the PA and the oncologist to quickly review the plan. Ryan was then walked to the small “chemo room” to start the process. Pills to take, drugs that were given via IV. Instructions, more instructions and questions. After a while, the nurse stated all was ready. I excused myself to the restroom. I was at peace with our decisions. We took our time with this decision and felt we explored and discussed it thoroughly. It wasn’t three minutes and I returned to the chemo room to what sourly reminded me of a triage situation back in December 2015. I proceeded slowly knowing who they were treating. Three doctors, a handful of nurses calling out instructions similar to what you see on a movie during a triage situation. Just as I became overwhelmed with emotions the doctor turns around and quickly asks me, “did he respond this way before?” Bright eyed I come closer and listen to the side effects: extremely fast heart beat, spiked body temperature, rash, heart pain, oxygen levels dropped and some other symptoms. Ryan looked like he had passed out. He was quietly moaning and completely out of it. One of the doctors instructed something of the words “max him out.” I finally responded and said, “In 2016 (when doing immunotherapy) all he had was the shakes, he did have a rise in temperature but not THIS. Not this bad. And, it passed quickly.” I had all my records with me so I opened up the large binder and found the notes (I am super organized). I showed the team what medications he was given and they nod. They had already done that and more. As the main doc leaves he gives instructions to one of the PAs to keep a close eye. The nurse tells me that if he doesn’t quickly improve they will have to call the ER to have him rushed upstairs. I stand, in shock. What the hell did we do? I’m ALL ALONE in Santa Monica with no family, no friends nearby. We needed to process today by ourselves, but we didn’t know I would need support. So I slowly walk to the chair next to him, sat and stared at the monitors. The nurse comes to me within a couple of minutes and said, “he is responding. I have never pushed that much steroids at one time before. He was given all we can give him. But I think he is responding and he can stay downstairs.” I wasn’t sure what to think. Did I need to call someone? What do I do? My cell phone doesn’t even work in the basement offices.
Ryan’s body goes into the shakes. He shakes and shakes. they put warm blankets on him, but it doesn’t really help. A long hour passes and his body calms down. Then another hour and he continues to improve. The PA speaks with me stating, “he gave us a real scare.” She tells us we can try again after a couple more hours with the smaller and slowest drip possible. He is already so drugged up that it was better to go ahead today than to wait another day. I nod my head. I didn’t see a better way. This was the plan and I had to swallow the fact that when one chooses this type of plan then we also choose the side effects, drugs and possible complications that come with it. Ryan starts to awaken and communicate again. We talk, he reminds me that all is well and he will be ok. That he felt this would be ok and that he could do it. Move forward. So we did. We left the oncologist’s office that evening at 8pm. It took 12 hours for the first cocktail. Twelve very long hours.
On the bright side, Steve Factor, our friend and Pure Energy Chef lives about an hour away (or two, or three depending on traffic) from the hospital and we had pre-ordered a juice/food cleanse from him. It was so nice to have high quality food available to Ryan and I while we forged forward on a very tough physically and emotionally draining couple of days.
The next day we arrived for day two of treatments. They prepared him with even more drugs and pressed on. Once we were done we headed home to basecamp (RV) in Oceanside, CA. Ryan literally crashed at the RV and felt like death for days. He only lifted himself from the bed to use the bathroom. I was isolated and alone. I became his nurse tending to all his needs. The kids were in Oklahoma (we sent them on purpose). Those days were tough, but inspiring. I was able to dig deep into my beliefs, my thoughts and emotions. I wrote several blog posts and started writing the rough draft for a book. The following months from September thru December, Ryan went thru 5 rounds of chemotherapy and immunotherapy, and at the same time we did everything we could to help him get through the treatments and the cascading effects cancer was having on his body. The cancer team (aka Dream Team) we created was a HUGE part of the success in treatments along with Ryan’s evolving emotional healing and the understanding of healing. The oncology team was always amazingly surprised how well Ryan was handling everything and the very uncommon fact that outside of treatment days Ryan was on ZERO prescriptions. Even with the low white blood cell counts Ryan not once became ill nor had complications. The oncologist accredited Ryan for taking control of his health.
In the next blogpost, A Year in Review: The 2017 Cancer Dream Team, we discuss the Team, The Plan, The Protocol and everything we focused on.
THANK YOU – If you are reading this, you have likely been a person who has sent me encouragement letters, beautiful gifts, loving thoughts on facebook or sent me healing prayers. Thank you from the bottom of my heart.
I would love to leave you with this quote:
“Inspired Effort is fun, easy and effortless, but all other effort sucks, is hard and impossible to maintain” ~ Ryan D. Luelf #TheCancerShift #WisdomFromTheRecliner (WFTR)
From Ryan, with LOVE
PS: Caroline is writing May 2018 Cancer Freedom . . . coming very soon, stay tuned!