Throughout most of my life, holidays were spent at my grandmother’s home. She lived in a two-bedroom apartment in downtown Toronto for more than half of my life. On every occasion, my mother, brother, aunts, uncles, cousins and eventually my own children would pile around her tiny dining room table to share meals together. On special occasions, we would pull out Rummoli and, being the big spenders we were, would play for dimes. The only thing that was more sure than my brother winning the pot was that we would shit talk each other throughout. The family was quite witty and there would be much laughter.
As I got older, the Rummoli games seemed to happen less and less often but the shit talk continued. Only without the board game on the table, the shit we talked was appallingly literal. It was always shocking when my grandmother would bring up her BMs and what she did to stay ‘regular’ but the reality was, given who was at the table, I was the odd woman out. You see, my entire family suffers from Gastrointestinal disease. My mother, her brother, and my brother all suffer regularly. My grandmother had colon cancer in 2014, and like the warrior that she is, she had surgery to remove six inches of her colon, they stitched her up and without taking a single painkiller walked herself out of the hospital the next day! When they would dive into a conversation about their inner workings, I kept quiet and silently thanked the powers that be that this was not my affliction. That is, until after I was diagnosed with Acute Promyelocytic Leukemia and took my first IV chemotherapy infusion.
I have known for months that this article needed to be written, but to be honest, for all the shit-talking we did at grandma’s table, sharing about this is extremely embarrassing. However, I can not be the only person out there who has experienced the same during cancer treatment and recovery wondering, ‘Is this normal?’ Maybe so…but maybe not. I’ll share my experience, taboo as it is, and maybe it will give you pause. Maybe it’s worth investigating because the harsh reality of our guts is, that if they do not work correctly, it can lead to a slew of much worse things later on. So, let’s dive into shit talk!
I did not know much about cancer, or the side effects of treatment before I myself was diagnosed. I expected I would feel sick often, my hair would fall out and I would likely not be able to taste properly or at all. What I did not consider, until the very moment it became my reality is that chemotherapy would wreak havoc on my gastrointestinal system. If we stop to think about it, it makes perfect sense. All of that toxic liquid is being pumped into our veins and like anything else, it’s gotta come out one way or the other! Its very purpose is to kill bad cells in our body. Unfortunately, most cancer treatments still can not differentiate the good cells from the bad cells.
So, what makes up our digestive tract? Simply put, it is everything from our mouth to our anus. There is a common strong indicator of how our digestive system is tolerating treatment if we know what to look for. Mucositis is defined by National Cancer Institute as ‘A complication of some cancer therapies in which the lining of the digestive system becomes inflamed. Often seen as sores in the mouth.’. What’s important to note is, that just because the sores in our mouths heal up, does not mean the same thing is happening inside. The thing is, our GI system is not designed to deal with extreme toxins so when present, it completely disrupts the delicate balance of our insides and can throw them into a tailspin. This was my experience throughout all of treatment. While I spent significantly more time in the washroom than ever before, my mouth sores healed up within weeks.
I was so excited to officially finish treatment in February 2020, so that I could enjoy my backyard on hot summer days and have a cider loaded with ice without having to worry about which medications I would have to take when and if I should avoid alcohol so as not to cause complications. Nope! Not summer 2020! I was excited to be free of treatment and to ‘get my life back.’
I was standing at my kitchen counter one afternoon after a delicious summer BBQ. Without any thought, I leaned up against the counter and pressed my belly against the edge. A sharp pain radiated through my belly. It was not the first time I had experienced such a pain but it did not usually happen in that spot. I always believed it would go away once I finished treatment. Was told most, if not all side effects would eventually go away but that one had not. In fact, it had gotten significantly worse. It was not unusual for me to wake up in the middle of the night during treatment in a cold sweat. The night sweats were so bad I would get out of bed and change into dry clothes. That was expected, but it had not typically been associated with belly pain. Yet, sometime after finishing IV treatment and long after the night sweats had stopped, I found myself waking up in the middle of the night in a sweat and with belly pain.
Due to the nature of my diagnosis, it required me to visit my oncologist often for checkups. Without fail, he would poke around my belly to make sure things felt normal. He never expressed any concerns with what he felt and so I asked him about what I was feeling. He told me my liver and kidneys were fine. That was great news but did not get to the heart of the problem. I explained the pain I was experiencing in my belly. Since his concern extended to the function of my liver and kidneys only, he suggested I speak with my primary physician. I had done that already. Given what my body had been through, my family doctor expressed that it was not surprising and my body required time to heal. She did suggest maybe I was experiencing symptoms of Irritable Bowel Syndrome or maybe Diverticulitis specifically because of where I was feeling pain, but because I had spent most of my life incapable of having BMs away from home, or during irregular times of the day, she decided we should start there.
While I was in treatment, I noticed that there were certain foods that did not sit right with me anymore. Most of them were not good for me anyway so it was simple to just avoid them. I used to love having a pop with pizza, but pop made me feel odd and I did not like it, nor do I need it so I just quit drinking it. Over time, I started noticing that more and more foods and drinks would instigate that sharp stabby pain in the left side of my belly. Alcohol was one – while super sad, I could not justify tolerating the pain, white pasta was another one. Even blueberries seemed to upset my belly. We were well into cleaning out our kitchen of less favorable options as these discoveries were taking place, so again, we just swapped out white starches for whole grains.
I often felt weak. Sometimes I could tell clearly that it was because I had lost significant muscle mass throughout treatment. Other times I could tell it was because my body was lacking energy. Even as far out as three years post-diagnosis, there were days that I stood up from my chair and the room would go dark. Sometimes I felt unstable and shaky. I had not put the puzzle pieces together yet when I visited a personal trainer who also was a lifestyle coach. She did a full assessment of my wellness. Including diet and digestive function. Her assessment made it clear that my body was very inflamed. I did not understand how that could be though. I had started eating very clean, short of an occasional drink or maybe indulging in a French bun for dinner, I was religious about how many fruits and vegetables I consumed in a day – loaded my protein shakes up with so much goodness. I just did not get it. I explained my digestive output which was frequent and never consisted of any form but she did not seem concerned about it, citing that as long as I didn’t go more than three times a day, it was not really diarrhea. And so it did not seem like a cause for concern. Instead, we focused on the intensity of my workouts – which in all fairness has always been too much. I supposed it was all related to the recovery phase of treatment. Like my doctor, and so many other had said, my body had been through a lot and would take time to heal. But standing at the kitchen counter and feeling that pain radiate through my gut sparked a type of fear that only a cancer survivor can understand. It had been over two years and things were getting worse, not better. It occurred to me that the professionals I had spoke to so far, did not hold the key to this particular mystery so I branched out and did the thing I was told not to do – I visited a naturopath.
My first appointment with the Naturopath was nearly $300. Once again, I was thankful for my private insurance through my employer and wondered how many others would suffer for the rest of their lives because they could not afford such a ludicrous out-of-pocket cost. We built a patient profile that described my health history, type of cancer, treatment, etc. She suggested I do a food sensitivity test. She explained that the test, through small electrical pulses would be able to tell me which foods I was sensitive to. Though I did not and do not understand the technology, I was excited to have a new path to explore.
When I returned to review the results, I was almost instantly disappointed to realize she had not previously reviewed my results and didn’t even seem to understand them thoroughly. She printed a few sheets of paper and explained to me that every type of food highlighted in red was causing my gut problems. My jaw hit her desk. Short of olive oil, whole grains and carrots, nearly everything was red. She then told me that I should stop eating everything in red for three months and that would resolve my problem. I found it interesting that a food sensitivity test could tell me that I’m sensitive to root beer when I had not consumed any recently I asked, ‘How can this test tell I’m sensitive to root beer if I haven’t drank any in ten years?’ Her response seemed flippant and unclear. Next, I asked, ‘The items in red make up about 80% of my diet. Am I supposed to stop eating all of it immediately, or can I do this gradually?’ Without missing a beat, she said, ‘If you want this to work, you need to do it all at the same time.’ My heart sunk. Admittedly, my eating habits and relationship with food had never been great and were already a work in progress. What she was suggesting was nearly impossible to process. I felt a deep sense of dread. It felt like my options were to immediately change everything I eat overnight, headed into what was supposed to be my first summer of freedom from treatment, or spend the rest of my life in utter pain. I was tired. I had been through so much already. I felt utterly sorry for myself. Lastly, in an attempt to hold on to some sliver of less than devastating news, I asked, ‘What happens at the end of three months?’ She said, ‘Then we can slowly start adding foods back to your diet.’ So, it was not three months. It was going to be however long it took and it was likely some foods I would never be able to eat again. I went home and burst into tears.
Three months came and went. I will not sugarcoat what it was like to entirely change my diet in a day. I had to learn to cook with new ingredients overnight and balance the regular diet of my children at the same time. It sucked – big time. While I can report that after those three months there was some improvement, it was not the correction that I was promised. More often than not, I still experienced pain and my….output….did not improve. I never went back to that naturopath. But I did recall that very early on in my cancer experience, I had come across the profile of a woman on social media who was a registered dietician specializing in people going through or recovering from cancer treatment. I had always been skeptical of registered dieticians because I was of the belief that they are restricted to the Canada’s Food Guide which, prior to 2020 was terrifying. But since Canada had updated the national food guide making meat producers and dairy farmers pretty darn angry, I thought I would give it a shot.
Jean LaMantia is a registered dietician, author of several books and a cancer survivor herself. I came across her business page on a social media platform while I was very much still in treatment. Unfortunately, at the time, I did not feel I had the time, energy or funds to dedicate to take another (out of pocket) professional onto my medical team. In hindsight, I think I was just so mentally and emotionally overwhelmed that I could not bring myself to do the research required to find the right person. Knowing what I know now, I could have, and I wish I had. As a registered dietician who specializes in cancer, she most definitely would have been able to guide me nutritionally through treatment to minimize the impact to my body. I am confident she could have saved me a phenomenal amount of pain and worry. Alas, there is nothing that can be done about that now.
When I first contacted Jean, she was very open to setting up a meeting with me. My initial ask of her was, ‘Can you tell me what types of herbal tea I can drink to settle my stomach?’ The question was prompted by my dwindling ability to drink any tea I enjoyed, including ones that are supposed to help with inflammation, nausea and digestive function. When she responded, she could have answered my question outright without probing. This would have been consistent with too many practitioners, but she did not. She asked me why. Then in our first meeting, she asked more questions. She wanted to understand the history of my gut issues, when they began, what treatment I had taken, what my regular diet looked like, what my goals were. And when I finished talking, she took the time to explain what was happening to my body. She said, ‘Michelle, you are suffering from enteritis.’
I had never heard of enteritis before. As it turns out, the National Center for Biotechnology Information, describes enteritis as ‘inflammation with associated mucosal injury of the small intestines.’ She went on to say that enteritis is a common complication related to chemotherapy. I once again found myself angry that it had taken more than three years to find a professional who was capable of assessing and determining that what I was experiencing was a common effect of cancer treatment. How many others were out there suffering in silence, or unable to find a professional who could help?
It was tough to hear what was required to fix the problem. It would require another complete diet overhaul, which to some degree was different than what the naturopath had recommended. She took the time to explain that when the intestines are inflamed, they become overactive and will not absorb nutrients properly. Also, since insoluble fibre is an irritant to damaged intestines, I could not eat anything that was an insoluble fibre or would further irritate the lining of my intestines. One of the major differences between the recommendation that the naturopath gave was to only eat whole grains, while Jean, the registered dietician, told me to eat absolutely no grains. Where this would not typically be a problem for proper functioning intestines, because the mucosal lining of my intestines were damaged by the IV chemotherapy I had endured three years prior, they were susceptible to further damage by anything that could scrap my insides.
Finally, for the first time in three years I had a clear understanding of what was happening inside my body, and why. It wasn’t stomach cancer after all. It was inflammation in my small intestines, and Jean was telling me we could probably fix it. Over the next six months, I completely changed my diet again. I ate nothing but white bread, rice, pasta, and essentially anything cooked and mushed up. The only uncooked fruit I could eat was ripe bananas, any other fruit would need to be cooked or pureed without the skin, and absolutely NOTHING with seeds. The only vegetables I could eat were root vegetables but they had to be skinless. Red meats were out as they are harder for our bodies to digest (which was no skin off my nose since I rarely eat red meat anyway). Grains, salads, nuts, seeds, alcohol was all out.
What happened was undeniable. The chronic joint pain and swelling I had been experiencing since treatment was virtually gone. The pain in my belly was virtually gone. For the first time since starting treatment, the….output….from my body reflected that healing was happening inside. But it was more than that. I can remember my oncologist telling me my sodium looked great after labs one day. It occurred to me that the reason it looked so great was that my body wasn’t absorbing sodium, and having little of it meant my blood pressure was chronically low, causing me to have near blackouts if I stood up too fast. I also noticed that I stopped having shaking episodes. I no longer felt frail.
I had come to terms with thinking I would feel these things for the rest of my life. In fact, I had been convinced by professionals that it was normal and my body just needed to heal, when in reality, there had always been a solution to, at very least, mitigate the damage while it was happening. It wasn’t until three years later when I could no longer stand the fear of what might be happening inside me or the incessant pain in my belly, that I decided to take matters into my own hands. Like too many times before, it took me doing the legwork to find solutions. I’m certainly not suggesting that we, as patients, do not have a responsibility in our own care. We do. More than we realize. I’m simply stating that it shouldn’t be that hard to find the help we need, and there needs to be greater acknowledgement that taking our last infusion or pill does not mean it’s over.
It has been nearly one year since the work I did with Jean. After the initial three-month period, Jean supported me in re-introducing foods to my body in a way that would not throw me back into a tailspin; that was gentle and tolerable for my body. I could not have imagined how exciting it would be to eat something like a bell pepper again. I had been suffering in ways I didn’t even know of, and therefore, was unable to pinpoint or articulate until after the work had been done. I am eternally grateful to Jean for her expertise and patience with me. She gave me my quality of life back, my confidence in my body’s ability to do its job. I think it’s fair to say that most cancer survivors will experience some level of fear for the rest of their lives. Fear of relapse, fear of secondary cancers, fear of totally new cancers. I doubt that will ever entirely go away, but I do have complete days that I no longer panic about undiscovered cancer.
What is the life lesson the world keeps throwing at me over and over again? There is a part of me that feels bitter about that lesson, but a bigger part of me that accepts that I am my best advocate. I may not have professional medical training, I may not be a nutritionist or a naturopath or a psychotherapist, but I am tenacious. I know when something is ‘off’, I know when I need help, and the world keeps telling me over and over again, that unless I advocate for myself in finding the answers that I need, I will never find them, so just get over it and get on with the work.
To you, the reader, I say, if you are a survivor, or going through active treatment, or even if you know someone who is, we do not need to suffer in silence. There is help out there, we just need to unapologetically look for it. When we find someone and the fit doesn’t feel right, move on until you find someone who is the right fit. Some of the damage caused by cancer treatment is permanent, of that I am sure, but I am also sure that we can have a better quality of life than what we are experiencing when we approach too many professionals who tell us, ‘That’s just the way it is.’ It doesn’t have to be that way, and it shouldn’t be that hard but if you are willing and have the energy to advocate for yourself, it can get better.
If you are suffering from the side effects of cancer treatment, lymphedema or just trying to improve your overall nutritional health, Jean LaMantia can be reached by visiting http://www.jeanlamantia.com, or by emailing firstname.lastname@example.org.
Until next time…you’re doing great!