My Mindfulness Journey – How I Ended Up on a 10 Day Silent Meditation Retreat

The week of my cancer diagnosis, I wandered into a bookstore and perused the self-help section (because if there was ever a time for self-help, it was now). I came across a book called “Full Catastrophe Living” by John Kabat-Zinn. I laughed to myself and thought “Yep that sounds about right”. Then I read the tagline “Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness” and I essentially brought it to the check-out counter and screamed TAKE MY MONEY.

This book was basically my bible when I was first diagnosed. At 650+ pages, it definitely wasn’t a light read, but the weight of the book gave me comfort. Anytime I felt stressed or overwhelmed, I knew I could pour over this book and it would make me feel better. In those early days, it was never far from my reach. I read it at home, in waiting rooms, in doctors’ offices, and on my conveniently timed trip to Hawaii. I even had my sister read it out loud to me while I was waiting for my PET scan because I wasn’t allowed to move my eyes due to the radioactive isotope that was circulating through my system (being a cancer patient, am I rightttt).

So what is this book all about anyway? John Kabat-Zinn is the founder of an 8 week Mindfulness-Based Stress Reduction (MBSR) course aimed to teach mindfulness and meditation to those suffering from illness and chronic pain. MBSR is taught at cancer centres all around the world as it is the only evidence-based mindfulness program of it’s kind. The book, “Full Catastrophe Living” guides you through the MBSR course and is essentially a “how to” guide for coping with the stress of living with an illness.

After reading the book, I was lucky enough to actually take the 8 week MBSR course because it was offered at my hospital. It’s one thing to read about something, but another to actually participate in it. The course was a game changer. Before, I always doubted myself whenever I tried to meditate. I always wondered “Am I even doing this right?”. But this course made me realize that I was totally overthinking things, and that meditation and mindfulness is actually a lot more simple than I had made it out be (but the simplicity is what makes it so difficult!).

The course broke everything down for us. We learned how to do a body scan, a seated meditation, a walking meditation, mindful eating, and mindful movement (i.e., yoga). I strongly recommend anyone going through cancer to find a local MBSR course, or to pick up a copy of Full Catastrophe Living because both were life changing for me. I think the course is available online for free at www.palousemindfulness.com. You can also check out some of John Kabat-Zinn’s free meditations on YouTube.

At the end of the 8 weeks, we had a 1 day silent meditation retreat where we got to practice all the different strategies we had learned from the course. I was hooked. It was like I had finally figured out how to keep my body and mind in a calm and peaceful state, regardless of what was happening to it. All I wanted to do was dive as deeply as I could into the world of mindfulness and meditation. So I decided to strike while the iron was hot, and I signed up for a 10 day silent Vipassana meditation retreat in Merrit, British Columbia.

You might be wondering: “What even is Vipassana?”. Vipassana is the most ancient form of Buddhist meditation. Translated, it means “to have insight into the way things really are”. It was “rediscovered” 2500 years ago by The Buddha and has been passed down to various teachers ever since. Today, there are hundreds of Vipassana centres around the world. Did I know any of this when I signed up? Nope. I just knew that it was something I needed to do.

I was initially put on the waitlist and didn’t think I’d get a spot… but then 2 days before the retreat, I found out that a space had opened up for me. At first I came up with all of these excuses not go: It’s too last minute, I’m not ready, I can go any other time… But then I realized that it was fear that was talking. Once I reminded myself why I signed up to do it in the first place, I figured “Screw it, let’s do it”. The retreat was also taking place during my 1 year cancerversary, so it seemed like a sign from the universe that I needed to go.

So I (poorly) packed my bag, filled up my gas tank, and off I went. I had no idea what to expect. I knew it was going to be hard, but I had no idea just how hard it would be. Disclaimer: The reason it’s taken me so long to finish this blog post is because I struggle to put my experience of this retreat into words. But here we go!

We had to arrive the day before the retreat started (Day 0) and we couldn’t leave until after the retreat had finished (Day 11). When I arrived, I was shocked that people were talking to each other. My first thought was… “Umm I thought we all agreed there would be no talking. Isn’t that the one bonus to this whole silent retreat thing?… No forced socializing?”. Turns out you were allowed to talk on Day 0 and Day 11, just not Days 1-10. Although I wasn’t over the moon about making small talk on Day 0… by Day 11 I was desperate to talk to anyone and everyone.

When I arrived, I was given the timetable for how the next 10 days would go. It basically consisted of meditating for 10+ hours every day and only eating two meals a day. We weren’t allowed to do anything that could possibly distract us from our silent introspection… that meant: no reading, no writing, no exercising, no yoga, and of course… no talking. In order to help ensure minimal distraction, we were given a strict dress code that included no tight clothing or bright/distracting patterns. The men and women were divided, meaning we slept separately, ate our meals separately, and wandered the premises separately. The only time we were in the same room was during the group meditations in the meditation hall. I personally thought this seemed a little unnecessary and outdated (not to mention non-inclusive). But, hey I guess that’s ancient Buddhist tradition??

I shared a room with 3 other people, which eventually became 2 after one of them left a few days in (people started dropping like flies!). We all had single beds with curtains around them for privacy. Living with other people and sharing a bathroom is hard when you can’t communicate about basic things like “When are you getting a shower?”, “Sorry, I’m almost done”, “Can I open the window?”, etc. But we made it work!

In order to explain what I learned on this retreat, I first need to give some background information on the principles behind this mediation practice. In Buddhist philosophy, all human suffering (referred to as Duhkha) stems from craving and aversion. Craving refers to wanting a sensation that is not present, and aversion refers to not wanting a sensation that is present. Another basic tenet of Buddhism is the nature of impermanence (also known as Anicca). Anicca states that everything in nature is impermanent, whatever arises will eventually pass away (including sensations in the body). Lastly, and perhaps most importantly, the ultimate goal is equanimity. To be equanimous means to be non-reactive, to observe both pleasant and unpleasant sensations without craving or aversion. By simply observing these sensations as they arise and pass without craving or aversion, we release what are called “Sankaras”. Sankaras result when we repeat certain habits over and over (mentally, physically, emotionally). When we repeat these habits in the mind and body, they manifest as Sankaras which rise to the surface in the form of craving and aversion (Stay with me!). In other words, these Sankaras are manifestations of mental, emotional, and physical habits and they express themselves in the form of craving and aversion. So, according to Vipassana teaching, if you are able to observe these cravings/aversions (i.e., Sankaras) in a non-reactive way, you break the habit of your mind and body and become free from those Sankaras. This is why Vipassana is considered a “mental purification process”. You are literally releasing and breaking countless habits that otherwise cause you to suffer.

After the first day, I felt like I needed major reconstructive surgery on my ankles from sitting cross-legged for 10+ hours a day. When I told my meditation teacher how distracting the pain was, she reminded me that physical pain is mental pain, and it was just another Sankara that needed to be released. The idea that my physical pain was somehow connected to mental pain made sense to me, so I pushed through. I sat with the godforsaken pain, and lo and behold, it eventually went away. Just like they said, everything that arises eventually passes. Even the screaming pain of my ankles that once convinced me they would surely need to be amputated.

So what do they actually teach you to do in the meditation? It starts with just focusing on the breath and fixating all your attention on the sensation of your breath passing in and out of your nostrils. By having such a laser focus on such a small area of the body, you start to feel subtle sensations that you don’t normally feel (such as tingling, buzzing, temperature fluctuations, etc.). You might think these sensations are pleasant or unpleasant, but the key thing is to just observe them equanimously, as they will eventually pass away.

Once you become an expert at sensing the subtlest sensations around your nose and nostrils, you move on to every other part of your body. Piece by piece, you tune into the most subtle sensations available to you. Eventually you learn to scan down throughout your whole body, feeling all sorts of sensations in every part of your body (I bet you didn’t know you could feel your upper arm simply existing when you’re sitting completely still, but you can!). It could be tingling, buzzing, warmth, cold, prickling, throbbing, etc. Any sensation. I couldn’t believe how many sensations I was suddenly able to tap into. The funny thing is that these sensations are there all the time, we just tune them out.

Eventually the goal is to scan en masse, feeling a free flow of energy and sensation throughout your body from your head to your feet. Once you are able to do that, you begin to scan your body internally by piercing from front to back and back to front, and then left to right and right to left. This allows you to become more aware of the field of energy from within your body, and is a lot harder to tap into.

For me, I had no trouble at all tapping into the sensations in my head, arms, and legs… but I had a lot of difficulty feeling any sensations in my torso. I was going crazy wondering why I couldn’t feel much sensation in my chest. I was convinced it was because of my cancer and surgery, which kept leaving me emotional and frustrated. Then I recognized that what I was doing was craving… craving for a sensation. I had to learn to let it go.

It wasn’t until the very last day that I went into my deepest meditation of the whole retreat. I had an intense hot flash (which would normally cause me to start frantically shedding layers), but this time I was able to just sit and observe the hot flash. After days of not being able to feel my torso, my torso was now screaming at me. HELLOOOO TORSO! My chest was on fire and the sensations were racing everywhere. It was then that I realized my hot flashes were an opportunity to go even deeper within myself. My entire body felt like a field of energy that became one with the space and people around me. What at first was an awful hinderance throughout the whole retreat, suddenly became my ticket into discovering a new field of awareness. It was pretty incredible.

I can’t lie, by no means did I spend every minute of every day in a transcendental state of bliss (far from it, really). There were many times that I sat and stared at my watch, daydreamed about all the possible outcomes of The Bachelor, and studied every word/ingredient on every skincare product I had to pass the time. Also napping… a lot of napping. I spent a lot of time outside staring up at the sky and dreaming of the sweet, sweet moment they would give me back my phone. Not to mention the time spent plotting how quickly I would escape on Day 11. There were many times that I broke down in tears, and debated leaving early or calling home. But something inside me told me I was right where I needed to be, and I’m so glad I didn’t quit.

This mindfulness journey has been a huge part of my healing process. It has genuinely changed the way I move through the world and handle stress, and for that I’m forever grateful. I’m by no means perfect, but I’m definitely not the same Sarah I was before cancer (for the better).

I’ve slacked off recently on my meditation practice, but I’m trying more and more to make time for it again. After all, no one else can do this work for us. We are the only ones that can take care of ourselves in this way. So let’s make the time for it!

xx

Sarah

The Diagnosis: Part 2

From the moment I heard the word “cancer”, everything happened so quickly. Like someone hit the fast forward button and couldn’t figure out how to turn it off.

Carlos and I had a flight booked to go to Hawaii for a week on August 2nd (for my 27th birthday) and I had no idea if I would be able to go. They rushed my first appointment with my oncologist for this reason. I met with her on July 31st and she told me the tentative plan for treatment:

  • 8 rounds (~4.5 months) of chemotherapy (expect hair loss, nausea, fatigue, and bone pain… yes BONE pain)
  • Nightly injections in my stomach to boost my immune system during chemo (expect more bone pain)
  • 1 year of targeted therapy (this is toxic to your heart so regular heart scans are needed)
  • Surgery (preferably lumpectomy with lymph node dissection)
  • 20-25 rounds of radiation (every Monday-Friday for 4-5 weeks)
  • Hormone therapy (oral pill and monthly injections) for possibly 5 years (this keeps your body in chemical menopause so that no estrogen can make the cancer grow, expect hot flashes and mood changes)

As someone who once fainted at the optometrist when I found out that I needed glasses, you can imagine how I handled this information.

When I asked about the trip to Hawaii, she explained that delaying treatment by a week wouldn’t make a difference and that I should go ahead and enjoy my vacation before I begin treatment.

So that’s what we did! It was a little taste of paradise to hold on to before I entered… well, not paradise.

The Road to Hana, Maui
RIP hair. It should be noted that I resisted EVERY temptation to not shave my head in Hawaii. Having to detangle it from salt water and wind every day was extra tedious knowing it would all be gone in a few short weeks.

I know it’s hard to believe, but I actually had an amazing trip. Sure, there were times when it all hit me at once, but changing my environment was the best possible thing I could have done for myself. On my birthday I rolled around in the sand, splashed around in the waves, went to a movie, and ate the most delicious fish tacos I’ve ever had in my life. It was perfect.

Having cancer sometimes makes being alive feel like you’re touching a live wire. It’s like all of a sudden, everything is amplified. The highs are so much higher, and the lows are so much lower. You start seeing beauty and joy in so many places you never saw before. This trip let me experience that and it kept pushing me to live in the present moment. When everything is new (new sights, sounds, smells, foods, activities, etc.) it invites you to fully absorb the present moment, which is exactly what I needed.

When I land back in Vancouver, it’s go time. Here’s a brief timeline of what happened:

August 14th: I have a port surgically put under my skin on my chest so that I could get treatment and blood work more easily (you can read about that here)

August 16th: I have a PET scan in order to find out exactly what stage I am.

August 17th: I start chemo (ew).

August 18th: Me and my amazing friend Charli get pixie cuts together to prepare me for hair loss.

August 21st: I go with Carlos and my sister Lucy to meet my oncologist for my first follow up appointment after chemo. My oncologist also has the results of my PET scan (warning, this is where shit gets real). Her voice gets a bit somber. She says “The good news is that it’s not in your heart, your liver, your brain, or your lungs, but… we did find two small spots on your sternum, I’m so sorry Sarah”.

My mind went completely blank. I instantly crawled up into a ball and just kept turning towards Carlos and looking at him with a complete look of panic. I couldn’t even cry. I was completely shell shocked. I couldn’t look at Lucy. I could see her in the corner of my eye with her head between her knees and her hands on her head. My oncologist continued, “So unfortunately this does make you stage 4 and you will be considered a cancer patient for the rest of your life“. I basically combusted into a ball of anxiety and panic. I didn’t have anxiety, I transcended and BECAME anxiety personified. Even though she followed this up with “but I don’t view you as a stage 4 patient because you have such a minimal amount of disease in your body”. And “There is a very good chance you will make it through this”.

So let me just clarify, no I’m not dying. The cancer did metastasize to my sternum in a small area (which technically makes me stage 4), but I’m not considered terminal by any means. My oncologist explained that I am what is considered “oligometastatic” (a new term, and very rare). Oligometastatic means the cancer has spread to a different part of the body, but it has only spread to one area and in a very small amount. What does this mean? It means I have a shot at a “cure”, meaning I could live a long life without this ever coming back. The other good news is that my mets (metastases) are in the bone, and women with bone mets have better chances of long-term survival. Bone mets also respond really well to radiation.

Let’s fast forward to present day for a second: The GOOD news is that I responded insanely well to chemo. After my lumpectomy, they analyzed the breast tissue and 7 lymph nodes they removed and found ZERO cancer cells. In the cancer biz, this is called a complete pathological response and it’s the best case scenario. Although I haven’t had a follow up PET scan yet to confirm all the cancer is gone, my doctors tell me it is HIGHLY likely that the mets on my sternum are also gone.

So am I cancer free?
The answer: we think so, but it’s not yet confirmed. But trust me, when I know for sure I will scream it from the rooftops!

I expected my treatment plan to completely change with this new stage 4 label stamped across my forehead, but it didn’t. What did change is that my oncologist added an extra drug into my targeted therapy regime. Instead of just receiving the drug Herceptin for 1 year, I was now going to receive Herceptin and it’s sister drug Perjeta to better attack the cancer cells. She also explained that instead of just doing targeted therapy for 1 year, I should now do it for 5 years. However, since I had a complete pathological response, she thinks that maybe it won’t be necessary (it’s something we’re going to discuss in the future).

In case you don’t already know, the survival rate for metastatic breast cancer is extremely discouraging. But, I am not going to let it bring me down. I’ve responded incredibly well and I’m going to keep fighting every day to live a happy and healthy life for as long as possible. I never understood the concept of “fighting” cancer until I had to fight it myself. It’s more than a physical battle, the real fight is choosing to take back your life every day and live it to the fullest, despite your circumstances. So that’s what I’m going to keep doing. It’s hard as hell and I didn’t expect to ever have to do this, let alone do it in my 20s, but it’s really the only choice I have.

I don’t know why I suddenly feel like writing a thank you speech, but I honestly cannot put into words how much I love and appreciate all the people in my life who have been there for me or supported me in one way or another. I have the best partner, family, friends, and coworkers anyone could ever ask for. My heart feels so full and I’m so excited to beat this with all of you amazing people by my side.

xx

Sarah