------- This page captures a random mishmash of thoughts and journaling on my own personal journey for anyone interested. I'll try and keep it updated for those who want to know what's going on with me. ------------- # Journal Entries ## Thursday 15 August - How I got cancer revealed I got a call today from my medical oncologist who is the liaison between me and the VICTORI genetics trial I'm part of. They alerted him to something picked up in my most recent genetic testing as part of the trial. I have an EPCAM gene deletion, which is one of the 5 genes associated with Lynch Syndrome. Lynch Syndrome increases your lifetime chances of getting colorectal cancer from about 5% to between 40-80%!! With odds like that, it seems almost inevitable that I was going to get CRC. It explains a lot, and means my cancer wasn't some random genetic fluke which seems to be the default answer whenever I've asked "why me at this relatively young age and with this relatively healthy lifestyle?" It's genetics, yes, but not a random fluke. ## Friday 21 June, 2024 - 2 years since diagnoses It's 2 years to the day that I was diagnosed. Very grateful to be here, writing about it and in good health. I'll try and get some notes on the past year of recovery in here for you shortly. ## Tuesday 30 May, 2023 - Six weeks out of surgery Well that was interesting. Having never been in hospital for as much as a single stitch in my life, a procedure like this was full of new experiences for me. Overall, it went about as well as was hoped. My surgeon was happy with the results, there have been no major complications, and I'm healing up slowly but gradually. I've got one more surgery to get through, to reverse the temporary ileostomy I have while my internal stitches heal. Ileostomies are a whole other topic I won't get into here, let's just say they are a marvel of modern medicine that serves a useful purpose, but one I'll be REAL glad to be done with. But the best news was that the biopsy results from surgery indicated the tissue removed and surrounding lymph nodes showed no traces of cancer. This means I'm considered cancer free! I felt a bit stunned for a couple of days trying to process the new reality. "The mission" had been all consuming over the past year, and like Rambo being told over the radio the fight was over and come on in, it felt a bit surreal to be told, "you're done, mission complete." But that's what it is. My personal identity went for a wild ride through all of this. I've always been above average health for my age, so being told last year it was an illusion and I actually had a deadly disease really took me and my identity by surprise. But I adjusted, and came to terms with my new reality. And then, like a cast removed from a broken arm, I was free. Cancer free. But just as a cast on a broken arm becomes part of someone's identity for a while, having it removed can leave a strange feeling in its absence. I might write more on that later, as it's been an interesting lesson in self-discovery navigating this whole mess. I've learned a lot about myself. But for now it's back to trying to regain my strength and the muscle mass I've lost over the winter, and put on some pounds. Bring on those calories. Just for fun, here are three pics of me. One the day after diagnoses at 185 lbs, which is my usual weight, the middle at 150 lbs in the darkest depths of chemo (yikes!), and the third of me just before surgery back up at 176 lbs. I'm around 170 right now, with a goal to be at 180 by mid summer. ## Friday 17 March, 2023 - Surgery date set April 12 is my day for surgery. Under the knife I'll go to have what's called a Total Mesorectal Excision (TME), done via a laparoscopic, low anterior resection. There's a mouthful for you. It will be a about a 4 hour operation, and keep me in hospital 3-5 days. Oh fun. Get ready for some Dad jokes, kids.  ## Thursday 16 March, 2023 - an invite to the VICTORI trial A final piece of the decision puzzle came into place today. Just hours before I was to speak with my surgeon, I got a call from a coordinator at BC Cancer Agency inquiring about my interest in participating in a trial called the "Validating ctDNA Observation vs. Routine Investigations Study (VICTORI)**". The trial is a genomics focussed trial of an promising but still early cancer diagnostics program. They'll take a piece of what they remove from my body and send it to a [US genomics company](<[Personalis | ImmunoID NeXT | Redefining immunogenomics](https://www.personalis.com/products/immunoid-next/)>) to create a complete genetics profile of it. This will create a genetics fingerprint of my particular cancer, which they will then use along with regular blood tests to determine if I still have any [circulating tumor DNA (ctDNA)](<[Circulating tumor DNA - Wikipedia](https://en.wikipedia.org/wiki/Circulating_tumor_DNA)>) present in my bloodstream. This will provide me some amazing data that I would otherwise have not had access to, and leet me know very quickly (~4 weeks) if I have essentially been cured of this cancer. Without ctDNA testing, I'd have to use on less reliable blood markers and MRIs to watch for possible returns of a tumor. I feel like this is a great opportunity. ## Wednesday 15 March, 2023 What a difficult decision process this has been, standing at a crossroad of surgery or no surgery. On one hand, I truly believe in my body's ability to continue the healing process and remain cancer free. On the other hand, the information I've been reading and some of the data I've seen indicate that the chances of reoccurrence are still fairly high even with people who had a 'complete response' showing on their MRI. What that data is telling me is, a complete response does not guarantee you're cured. Based on that, I've made the final decision today that, while it has its own set of serious risks, I think having surgery is the safest route for me. I will be speaking with my surgeon tomorrow and will tell her I'm ready to proceed. Making informed decisions is exhausting. The mental energy it takes to consider all the variables to a satisfying end is a real effort! I feel relieved after 7 days to have finally picked my path forward. Now I can focus my energy on walking that path to the best of my ability. ## Tuesday 7 March, 2023 I met with my naturopath today to discuss the results of my MRI, and my consideration of going without surgery for a period of time to see if I can continue making progress on my own. She has concerns about me being in a holding pattern for too long, because if there is residual tumor left behind that can turn into a recurrence quickly. But she did give me some good information to think about as I try and make a decision. ## Monday 6 March, 2023 I heard from my lead oncologist today about the results of the MRI scan. I was disappointed to hear the results showed an "incomplete response." What that means is there are signs there could be residual tumor still there. Even though they can't actually see the tumor anymore on the scan, there are certain markers that indicate the potential there is something left over. Unfortunately, that means they will recommend I have surgery. I don't have to do it, and so I am going to do some research and try and determine what the risks are of going the non-surgical route. ## Sunday 5 March, 2023 It's Sunday March 5th, which is about 8 months from when I first received my cancer diagnoses. The past 8 months have been a journey like I've never experienced before. Easily the most intense period of my life as I remember it. It started with the haunted house of uncertainty in the first few weeks after diagnoses. A house full of dimly lit rooms with little or no information, other than a scary sign on each door in all caps "YOU'VE GOT CANCER". And of course my lizard brain was there to fill in the dark corners with every possible monster and scenario of doom. Next came radiation therapy. Painless and innocent enough in the physical treatment room itself, but it quickly put me on my ass (literally) in the following weeks as the side effects from radiation set in. It gave the 'naively-optimistic-me' a taste of what was to come. Then into chemotherapy, the main course through the cold winter months, which took my body and mind to places they never want to go back to. In the midst of these intense standard therapy treatments, I was running my own survival side plan: 1. **A targeted food intake** that dialled in calories, macros, and ingredients. For periods I survived on a few hundred calories a day, I water fasted, I keto dieted, all to try and starve this tumor. And I tracked everything. I recorded virtually every single piece of food consumed since Day 1 of my diagnoses. 2. **Pushing my body to move** every day, in a bid to hold on to my quickly wasting away muscles. Finding the will and energy to move after days in a fetal position on the bed from nausea was a test. I wanted nothing more than to hide. 3. **Turning my mind into a placebo machine**. The placebo effect is very real. It's been proven beyond a doubt in thousands of clinical trials that we can heal our bodies with only our minds. If a plain sugar pill and some belief can beat a global pharmaceutical company's billion dollar new pill in a clinical trial, then intentionally practicing the placebo effect with focused meditation simply cannot be ignored as a healing tool. I believe this may have been the MVP of my plan. 4. **Supplementing with the magical botanicals** given by this planet and the learnings of those before us. "Clinical trials" have been going on for thousands of years by ancient peoples around the world. Many have been healed–and plenty died–in the quest for knowledge about how different plants affect our bodies and minds. There is so much knowledge in this field we're only scratching the surface of. And now it's time. At the end of the long standard care treatments comes the restaging of my cancer, to see what progress I've made through pushing my body—and by extension my cancer—for 8 months. Restaging is when they reassess what the response has been on the surface with a colonoscopy, and scan below the flesh with an MRI to look a bit deeper. This restaging is important, because it will determine the need for, and options my doctors will present related to surgery. A "full response" means there is no sign left of the cancer, and could mean I might avoid needing surgery at all. ## Monday 24 February, 2023 MRI scan today. Lying inside a $6M machine for half an hour while it churns away looking inside my body. I'm very excited and anxious to get the results, but will have to wait a week or two most likely. Patience... ## Monday 22 February, 2023 Colonoscopy today. Third one in 10 months, damn I'm done with these. The procedure itself is a breeze. All doped up and no sweat. But the days of "prep" before hand are not fun. No good food from 4 days out, then no food for 2 days, then drink 2 liters of laxative the night before to finish the job. Oh and a couple enemas the morning of just for good measure. But what a cool medical procedure to watch on screen! ## Monday 6 February, 2023 Happy New Year! I've got to do a better job of journaling, hard to make the time with everything else going on. I'm getting close to the end of chemo, the second leg of my standard care treatment (surgery is last). This has been a loooong 5 months of dealing with poison coursing through my body and veins day after day. Drugs so toxic, the sheet they come with advises you use a separate bathroom to keep spit and sweat and other bodily fluids away from others, as those are toxic in themselves! This from the guy who doesn't even like taking aspirin unless I really have to. But despite all that, I've never felt luckier. Seriously, I think I've got to be the luckiest guy in the world. This journey has brought out the true colours of the people around me. And those colours have been overwhelmingly bright, vivid, and beautiful. I've been brought to tears almost weekly from the simple, yet thoughtful and caring actions of others. It's enabled me to see just how lucky I am to know these people, to have them in my world. It's overwhelming. Onward! ## Wednesday 28 December, 2022 Merry Christmas! Big gap there in the journaling! Lost my way a bit on it I guess. But here we are, I'll try and catch up. I'm just over half way through the chemo portion of my recovery. I'm using the word recovery more these days, I think it captures what I'm doing better than other words do. Anyway the past 12 weeks of chemo have been a fu#@ing gong show to put it mildly. I had no idea what I was in for! I'm going to put together a section here somewhere on the side-effects of chemo, because honestly that has been such a monstrous thing to try and deal with. I've learned a lot that might help someone else, lots of stuff I wish I had been more aware of going into it. But the good news is that this round 5 of 8 has been the best so far. Appetite has been strong, gaining back a bit of weight, and getting more exercise which is so important. ## Monday 11 Dec, 2023 CT Scan - I had an active 8cm tumor and 4-5 lymph nodes involved when first diagnosed in June 2022. The CT scan report came back with a loudly declared caveat that "due to extreme fat and muscle loss" since the last scan, it was very difficult to interpret the images, so don't make too many assumptions. BUT...the markers of the tumor and involved lymph nodes shown in the first scan were not visible on this one! Of course no one will tell me what that actually means, only that it's positive news. While it's great news, I have to remain cautious about jumping to conclusions. I'll need a colonoscopy and an MRI to provide the full detailed picture of what's beneath the surface. ## Tuesday 11 October, 2022 Today is round 2 of chemotherapy. Round 1 was a disaster with the side effects I went through, so I'm hoping I'll be better prepared for this session. More drugs, better knowledge of what to expect. ## Tuesday 6 September, 2022 Today I finished my 5th and final [radiation therapy](../3.%20Treatments/3.6%20%20Standard%20care/Radiation%20therapy.md) treatment. Glad to have that phase out of the way. I was lulled last week into thinking it was going to be easier than it has been. You don't really feel anything during the treatment itself, and for most of the week I was feeling pretty good. But I guess there is a 5-7 day lag on some of the side effects, so by yesterday I was starting to feel like shit. Diarrhea, sensitive around the waist, soreness going to the bathroom, nausea and tired as hell. Waking up today for my last session I really didn't want to be moving much. And I was trying to go in a little [fasted](../3.%20Treatments/3.4%20%20Food%20&%20Diet/Fasting.md), so I hadn't eaten anything at all yesterday, which doesn't help with the attitude. Anyway blah blah, it's still nothing compared to what some people are suffering through with their conditions, I have to keep reminding myself of that and how fucking lucky I really am in the big picture. I found out last week I'll start chemo on Sept 20, just few short weeks away. It's a 6 month program which sounds long, but I'm hoping that will minimize the severity of the side effects. Guess we'll see. ## Monday 5 September, 2022 Struggling and bit on this labour day Monday finding the energy to think, focus and do the things I know need doing. Feeling a bit overwhelmed by it all right now. There is so much to do and I'm a bit 'deer in the headlights' trying to break into action. I'll get there. ## Friday 29 July, 2022 Well it's Friday of a long weekend and I'm trying to get myself focused on the plateful of stuff I want and need to get done. Cancer has really sucked a lot of my time and attention, I'm still deep diving this thing so I can hopefully stay in control of it to the extent I can. I've realized in my short time with it, that the traditional system is nothing more than a conveyer belt that takes you past "things". Some of those things can be valuable of course, like treatments and doctors. But it's a little like taking a cruise. You can get on and just stay in your room and arrive at your destination. Or you can learn about what's on the ship, take and use what's offered and seems of value, refuse what's not, ask for what's not on the menus, and squeeze the fuck out of everything you can. ## Thursday 30 June, 2022 Day 10. Closing in on a long weekend, and I'm still in the midst of planning and getting my shit organized. This situation has allowed me to spend some good time seeing some of the things in my life from a different perspective. ## Wednesday 29 June, 2022 Day 9. The days are moving pretty quickly. ## Tuesday 28 June, 2022 Day 8. Beautiful walk this morning through the woods, channeling my dad's energy and soaking in the quiet of the morning. Good medicine. On to some more research and tracking today, I'm feeling the pressure to get some work work done but not sweating it too much. ## Monday 27 June, 2022 Day 7. Lots of work done today on gathering data on my body. Got a glucose meter up and running, and [Cronometer](https://cronometer.com) is humming along capturing my daily food intake as well. Really happy to have everything in one place. Keto going well, as is [fasting](../3.%20Treatments/3.4%20%20Food%20&%20Diet/Fasting.md). Hitting the numbers I want. ## Sunday 26 June, 2022 Sunday, Day 6, fully on the keto way and into my first round of compounds targeting glucose, [glutamine](../3.%20Treatments/3.3%20%20Supplements/L-Glutamine.md), and angiogenisis. I've got the start of a plan, and I'm into execution mode. Feels good to be moving on it. This week I need some scans booked so I can see what the hell else is going on inside me. I'm surrounded by love and support and I've immensely grateful for all of it. Onward. ## Friday 24 June, 2022 It's Friday, it's sunny and warm, and I'm glad the week is over. Pretty good day overall with more reading, learning, and communicating with good people I love. ## Thursday 24 June, 2022 Day 2 has been much better than day 1. I got focused on learning and continued gathering information. Bought [Dr. William Li](People/Dr.%20William%20Li.md)'s book about eating to beat disease, which I think will be a good resource. Fully into my keto diet today as well, and I have restricted my eating window to 4 hours, between 3 and 7pm at this point. I might relax on that later but for now will stick with it. Yesterday and today also saw calories restricted to about 900 which is low, but I won't keep that up for too long. Don't want to lose weight or muscle mass. As more people in my circle start to hear about what's going on I'm getting good messages of support and survival stories from others that give me hope. I do truly believe I can beat it, if I stay focused and do the right things methodically. My current strategy is to use my strengths in research, nutrition, and being a determined motherfucker to develop an integrative plan that compliments my standard care and improves my outcome. I've got a few initial objectives with this effort, which are: 1. Identify my cancer's unique genomic and metabolic characteristics. 2. Identify and understand the key metabolic and cell signalling pathways my cancer–in its current stage–relies on to exist and grow. 3. Block those pathways with every inhibitor available to me. That means food, supplements, drugs, good vibes and anything else that will help. ## Wednesday 22 June, 2022 This is my official Day One of cancer. Yesterday I was diagnosed with colorectal cancer after undergoing a colonoscopy. This will be my record of this journey to recovery. My intention is a full recovery with cancer free status within a one year timeframe. I don't care what my statistical odds for achieving this are, I am going to do it. That's it. I have far too much to live for, so living for all of it will be my mission. The day was a full day of research. I learned a lot about a subject I had only cursory knowledge of, and I feel both more empowered and daunted. But's that's the curse of knowledge I suppose. Onward. ## Tuesday June 21, 2022 Day 0. Fuck.