Thriving
“One of the opportunities cancer provides is the chance to take stock of your life and ask yourself the big questions about what you’re doing and where you’re going. At the same time; it can help you cherish the good moments, to tell the people you love that you love them, and to appreciate the gift of the tiniest, most elemental sensations”
Provide a brief biography to describe your life pre-diagnosis.
I am a dual-citizen of America and New Zealand. Pre-diagnosis I was living what felt like a well-balanced life in Brooklyn, New York. I spent half the week working as a private tutor for high schoolers, teaching kids grammar, the art of the essay, and some smatterings of history, French, and German. The other half of the week, I pursued my own reading and writing projects. For leisure, there was some CrossFit, some yoga, haunting natural wine bars, and highly competitive board game nights with friends.
Did you have any symptoms leading up to your diagnosis?
What led you to see a doctor?
To speak about “my diagnosis” accurately requires me to describe my diagnoses (plural).
I received my first diagnosis on May 29th, 2019, precisely 5 days after my 32nd birthday.
I had had digestive troubles since I was in my early twenties. And though I’d never been formally tested for sensitivities, it was clear that eating low-quality processed foods, in particular glutinous products, could trigger severe digestive upsets. To avoid such catastrophes, I came to follow some loose rules, such as eating gluten-free and avoiding (for the most part) dairy. But overall, I never really took my digestive troubles that seriously, and spent most of my twenties ping-ponging mysteriously between mild constipation and loose bowel movements.
Then one day in my late twenties, after consuming too many slices of delicious pistachio cardamom loaf, my whole digestive system went into revolt (diarrhea, lots of stomach pain, inability to process complex foods), and I decided to visit a gastroenterologist. Something about the man’s bedside manner really put me off. I felt he was dismissive of my talk of “sensitivities.” All he wanted to do was put me in a series of boxes (celiac or not? lactose intolerant or not?). I didn’t really like his approach, and so I walked away without completing the battery of tests.
At the end of a decade of digestive ups and downs, my first real symptoms emerged: I started seeing occasional blood in my stool and — like many people diagnosed with early-onset colorectal — ignored it. These episodes would last a few days. I would make some improvements to my diet, remind myself to stop straining when I sat on the toilet, and the issue would resolve. Because this only happened a few times a year, I attributed it to hemorrhoids (of which there is a history of in my family). About 6 months before my official diagnosis, I started seeing more blood, more often, and I grew concerned. I met with a naturopath to get advice on my diet, but this only staved off the problem temporarily.
I can remember the moment I finally thought: I really need to see a doctor. It was March 2019 and I was on a vacation with my family in Florida. When I got off the toilet, I saw a significant amount of blood in the bowl. Like, a scary amount. And this got me wondering if I had something more serious. Maybe an anal fissure or colitis? As for bowel cancer, the thought never even crossed my mind. I had not yet heard of early-onset colorectal.
I made an appointment with a new gastroenterologist who performed a manual exam, found blood coming from higher up in my intestines, and said I needed a colonoscopy. He hypothesized that I could have some hemorrhoids further up the colon or possibly a more serious form of chronic inflammation. He also mentioned that we needed to rule out cancer as a possibility. I was very surprised to hear this. Cancer? I asked him. Yes, he said. We’re seeing more and more people under the age of 40 getting diagnosed. I walked out of the office feeling worried I might have colitis. But as for cancer, I still dismissed it out of hand.
The official diagnosis came in three days later: Stage III mid rectal adenocarcinoma, clinical stage T3 N2. Quite the mouthful.
Fast forward a year and a half later and I’ve been through 8 rounds of chemo, one serious hospitalization, 5 weeks of radiation, and two major operations – one to remove my rectum and reroute my intestine through my abdomen (this is more formally known as a lower anterior resection or “LARS” plus an ileostomy) and one to rejoin my colon back to my intestines (the “reversal” operation). The surgeries were deemed a success, meaning they thought 100% of the cancer had been removed and my new internal plumbing didn’t have any leaks. And so, very eager to be moving on with my life, I started to believe I was well and truly through the ordeal.
Diagnosis number two blindsided me even more than diagnosis number one. I was about 4 months post reversal op and well on the way to recovery. I had started to exercise again, and, in my eagerness to get back in shape, overdone it on a few workouts. As a result, I started to feel pain in my lower back. In the days that followed, I backed off the intensity, but the pain didn’t go away. Instead, it grew worse. And worse. And worse. After a month in and out of physiotherapy appointments that only ever provided temporary relief, I was in so much pain I was spending my days lying supine on a concrete floor, feet against the wall. It was time to see a specialist. I scheduled a meeting with a sports and exercise physician who set up an MRI. She hypothesized I had a slipped disk in my spine.
When I arrived to review the scans I was one hundred percent certain I was there to discuss my slipped disc (what else?). I am embarrassed to say this, but I did not even realize that colorectal cancer could recur in the spine. This is quite rare, but not unheard of. Perhaps there was an element of willful ignorance in my not knowing, but whatever it was, I definitely wasn’t thinking about cancer. That is, until the moment I walked in the door of the specialist’s office and saw the pained look in her eyes. She sat my partner and me down and explained that my cancer had recurred. Then she walked us through some MRI slides showing that the primary tumor had metastasized in no less than five places: most disturbingly, the metastasis in my L4 vertebra had grown so large it had caused a compression fracture, spilling tumor tissue and bone material out the side of the vertebra and into my spinal canal. Not pretty. All of this was placing enormous pressure on the nerves running down my right side through my hip and leg, causing the intense pain that was preventing me from walking, sitting, or even lying down without pain.
Additionally, the cancer had metastasized into my liver (12 lesions), lungs (a few small lesions), pelvis (a local recurrence in one lymph node), and abdomen (on the skin surface, at the site of one of my surgical scars). This was, to put it mildly, a lot to take in.
How did hearing the words “you have cancer” make you feel?
If I had to describe the feeling in one word, I would say “absurd,” which Albert Camus helpfully defines as a feeling of “the divorce between man and his life, the actor and his setting.” During my first diagnosis, I didn’t have any emotional response. I felt completely removed from the situation. It wasn’t quite an “out of body experience,” but my mind – no doubt in self-defense – became ice cold and rational. I asked a series of questions to learn more about my condition. It seemed to me that something intense and important was taking place, but instead of feeling scary, it felt surreal.
It wasn’t until a couple days later, while going through treatment options with a surgeon, that it all hit home emotionally. It was the thought of having an organ removed from my body that overwhelmed me. At the time, this prospect felt like an unimaginable violation, and I broke down and wept.
About a year and a half later, I discovered that the words “the cancer has come back” are much, much harder to deal with than the words “you have cancer.” The second time around, there was no cold, rational barrier between me and the news. There was mortal panic, intense fear, and a feeing of desperation. I really had believed (or wanted to believe) I was finished with the whole process, and realizing that I was not only not finished but also that things had gotten worse – well, this was the first moment I really felt I was looking death square in the face. It didn’t help when, a few minutes after the revelations, my surgeon called and said there was nothing to be done but to “manage” the situation. I no longer believe that to be true, but hearing it out of the gates was very, very difficult for me, and I still resent him for that.
I would like to add, however, that after these initial terrors, as I was sitting in the specialist’s office sharing a box of tissues with my partner, Berta, something quite beautiful happened: it suddenly seemed crystal-clear to me that all my usual anxieties and worries about my life – my concerns over what I was going to be and do – were more or less bullshit; that what really mattered was to love and be loved. It felt like an epiphany. And though it didn’t last long, the memory of that powerful moment has stayed with me.
What is/was the treatment protocol (Western, Eastern, Integrated, or otherwise)?
I have been very struck by the way that the “official” world of oncology medicine and the world of CAM (Complementary and Alternative Medicine) so often seem to demonize one another. According to the alternative crowd, conventional oncology is “poison.” According to the conventional crowd, alternative medicine is “woo woo.” My approach has been to keep an open mind, and proceed with a mixture of skepticism and exploration, combining the best of both. Practically speaking, this has meant pursuing the traditional western approaches (chemo, surgery, radiation) and a mixture of eastern and integrated practices, which I try to vet with a critical eye. My general belief is that the best and brightest doctors and healers are not on the quest for a “silver bullet” cure, but instead are looking to a more “stacked” approach, attacking the cancer along specific molecular pathways while also working to create an inhospitable environment that will potentiate the work of chemo and radiation.
I’ve tried to divide my stack into four layers:
The bottom layer is conventional oncology: chemo, radiation, surgery.
Next up is the “precision oncology” layer. This is an increasingly in-vogue term for trying to make sure you target each one of your specific mutations. Breast and Lung Cancer are further ahead in this, but colorectal medicine is catching up, and there are off-label drugs and alternative modalities that can also contribute to the cause. I have three mutations that I am trying to target: KRAS G13D, APC, TP53. (On a very technical note, because of my KRAS mutation, I am not a good candidate for the monoclonal antibody therapies that target the EGFR pathway.)
The third layer of the stack includes all those indirect modalities that try to either strengthen the body or create an environment inhospitable to tumor growth.
Finally, there is the top-layer, the psycho-spiritual stuff: belief, mediation, therapy, visualization techniques, the cultivation and care of the soul.
My current stack includes:
Layer 1:
FOLFIRI chemo every other week at an 80% dose
Layer 2:
A fasting modified diet pursued concurrently with chemo for the first 3 days of my cycle
Vitamin-C infusions administered each day for the first 3 days of my cycle
Off-label drugs:
Metformin
Sulindac
Pitavastatin
Layer 3:
Hyperbaric Oxygen Therapy
Schlenz Baths (a naturopathic form of hyperthermia)
THC and CBD oil
Mushroom Tinctures
Sodium Bicarbonate (baking soda)
Exercise: Hiking and Weightlifting
Yoga
A boatload of supplements
A keto-ish diet
Layer 4:
Energy Healing
Acupuncture
Wim Hof breathing
Meditation
Cold Immersion Therapy (ice baths)
Infrared Saunas
Qi Gong
Positive Visualization
Forest Bathing
To determine the regime of off-label drugs and the “boatload” of supplements I take on a daily basis, I have worked with Dr. William LaValley of “LaValley MD Protocols” and Dr. Keith Block of the Block Center – both are highly knowledgeable physicians who share a commitment to researching the best of western, eastern, and alternative approaches and then helping patients put them into practice.
FYI Dr. LaValley is a cancer consultant who works exclusively as a researcher and collaborates with other integrative doctors. Dr Block is a clinician with his own center in Chicago. I recommend reaching out to both. Though it must be said that insurance will not necessarily cover the costs of their consultations.
A final note: The above list is aspirational. I have done all of these things, but I do not succeed in doing all of them consistently! If any readers out there want to ask me about the specific research/justification behind any of the above treatments, please feel free to reach out.
What do you know now that you wish you had known back then?
The adaptability of human beings (including me! including you!) is extraordinary. A few years ago, if I had been told: in the next two years, you are going to have your rectum removed, spend a few months with your intestines sticking out of your abdomen, and experience regular suffering on a biweekly schedule, I would probably have fainted on the spot. But you know what? You get used to it. You adapt and you realize that most of the things that really matter are still available — and not just available, but more savored than ever before. All the stuff I’d imagined would be “intolerable” or “life-ruining” turned out, for the most part, to be just different. Pooping out of your stomach instead of your anus? Not so bad, just different. Losing your rectum and having to use the bathroom more regularly? Not so bad, just different (and on the plus side, I get a lot more reading done these days). Yes, there is suffering – you can’t get around this. But the body’s memory of pain is astonishingly short, and the mind’s capacity to draw strength and motivation from suffering is astoundingly long. The suffering passes, and the life that awaits you on the other side is all the sweeter for it.
How has life changed? What has been your biggest challenge since your diagnosis?
Life has changed radically. I no longer do what I used to do, nor do I live where I used to live. Because I am immunosuppressed, I moved back home to New Zealand with my partner to wait out the coronavirus. This went from being the plan for the next month or so to the plan for the next year or so. I am also one of the lucky ones who has enough financial support to be able to quit my job and focus on my healing. These days, my partner and I live on a biweekly schedule, dictated by the rhythms of my chemo regime. Week 1, we are at home. I am convalescing and Berta is taking care of me (I love you, Berta!). Week 2, we have been doing a lot of in-country traveling, looking for opportunities to get out into nature, be it up a mountain, out on the sea, or through a forest. I think these regular trips to the outdoors have really helped me to feel alive and to thrive.
But, of course, there are challenges. If I had to name the biggest ones, I’d like to cheat and mention two.
The first big challenge derives from managing unrealistic expectations. I want my partner and my closest family members to be unremittingly positive forces in my life, but they, too, have their own emotions (obviously!) and need to do their own processing. Sometimes, something I call “the cancer narcissism” makes me want everyone to behave as I need them to, when I need them to, because after all (the voice in my head stammers) I’M THE ONE WITH CANCER. But in reality, cancer is just as much an ordeal for the patient’s loved ones as it is for the patient. Recognizing that your loved ones have their own difficulties and traumas, and remaining generous and patient as they work through them – this is hard, especially when you yourself are suffering.
The second big challenge has been keeping on top of the thousand and one things I want to be doing to help heal myself, and to forgive myself for not managing to do all of it at once. When you get cancer you are in a situation where you suddenly want to be doing EVERYTHING NOW. But each one of these things requires you to build up a new habit, and most of the scientific literature out there on habit formation (to say nothing of decades of personal experience) suggests you can’t form too many habits at the same time. So the solution is to be patient. You are trying to build a whole new set of routines, and this is not going to happen overnight. You are going to give up on your diet and secretly devour two almond croissants and feel terrible about it. You are going to get sick of your pills and supplements and stop taking them and regret it. You are going to stop exercising for days on end and then finally get back on the yoga mat, cursing yourself under your breath. You just have to keep at it, forgive yourself for the slip ups, and stay disciplined about what you’re doing and what you’re adding to what you’re doing. The main thing is: whenever you fall off, get back on the horse!
What is some advice you can pass on to someone who has just been diagnosed with cancer?
Take research into your own hands
Treat yourself (responsibly) as an n=1 (that is, don’t just go with the status quo and assume the status quo is your fate)
Read this short essay by Stephen Jay Gould: https://journalofethics.ama-assn.org/article/median-isnt-message/2013-01
Treat your traditional oncologist as a member of your team, but do not be ruled by his or her opinions.
Celebrate the small wins.
Lower the dose of your chemo if you need to. Doing so is NOT necessarily a bad thing. I was having major side effects with my FOLFIRI and trying to endure them out of an assumption that I needed 100% of the medicine to fight the cancer effectively. But this was not true. No pharmaceutical companies want to fund a clinical trial exploring whether a medicine is just as effective at a lower dose (because this would reduce profits), so there isn’t a lot of research out there on lower doses. But if you ask around, you will find many stories of people whose chemo was effective at lower doses. For my part, I have been at an 80% dose of chemo since my third cycle. On this regimen I have stopped losing weight, am able to sleep, and recover faster from my symptoms. I think that’s been vital to the improvements I’ve seen thus far.
As far as the mental game goes, I find it very helpful to try and “disambiguate” anything that scares me. That is to say, I recommend breaking big, monolithic thoughts into smaller, more manageable thoughts. For example, it can be very overwhelming to think of going through MONTHS OF CHEMO. That is a giant thought that can become a screen for all kinds of fearful projections. But no one actually ever endures “months of chemo” all at once. What “months of chemo” really looks like in practice is as varied and rich as life itself. It includes periods of discomfort and periods of joy. It includes moments of fear and moments of peace – sometimes, even whole days where you forget you are ill! So, in principle, I take everything one step at a time. Instead of thinking about getting through chemo, I focus on getting through the afternoon, or, if the discomfort is acute, then I think about getting through the next five minutes with controlled breathing. And then I tell myself I’m five minutes closer to feeling good again.
What do you wish people knew more about when supporting a loved one with cancer? Were there any specific things that helped you?
I find it very helpful when the community around me projects hope, strength, and positivity. I understand this is not always possible (see the “challenges” section above), but I think having people around you that help you cultivate a thriver mindset by emulating it themselves is extremely helpful. So long as you don’t expect it all the time.
I also think a lot of cancer patients struggle with becoming suddenly dependent on others. And the response to that situation is often to try and do things for yourself to preserve your autonomy and independence. Sometimes I really need to be told to let others take care of things for me. So, for the cancer caretakers out there, don’t be afraid to tell someone to SIT THE EFF DOWN AND RELAX every now and then.
People supporting cancer patients also need to be responsible for their emotional and mental well-being. Who takes care of the caretakers? This is a HUGE question in cancer care. For those closest to the patient, there is a real desire to self-sacrifice. I think the mentality is kind of like: if my loved one is suffering so much, the least I can do is suffer a little alongside them. And because caretakers aren’t experiencing the same physical difficulty, they all too easily minimize the mental and emotional difficulties they go through, which aren’t as visible to others in the way that bodily suffering is. Caretakers need time to themselves and they need their own support systems. This is what enables them to be good caretakers. People don’t like to talk about this, but cancer puts huge tensions on existing relationships. Yes, it can be a chance to grow closer, but it is just as often a force that drives people apart. If you are lucky enough to have someone providing you with regular support, try to invite other members of your community into your care environment so your primary caretakers can step away for a while. The other advantage of doing this is it gives friends a chance to help – and I find most friends are desperate to feel like they are doing something for you instead of sitting idly by! So don’t be shy about asking friends to lend a hand by, say, coming over and cooking a meal. The person who helps feels good, and the primary caretaker who gets a break feels good too. Everybody wins!
What have been the most helpful ways that friends and family have supported you?
Taking care of yourself when going through treatment can often feel like a full-time job, and I am often very bad about keeping in touch with everyone to update them on my progress. Quite frankly, the emotional labor of watching others work through their own feelings about my situation often feels like too much of an additional burden. So what I’m most grateful for are the friends who reach out again and again without any expectation of a reply. I have one person who writes me an email at the beginning of every single cycle. Another friend who leaves me beautiful voice texts on a regular basis. I don’t always get back to these people, but I always love to receive their messages. So if you want to reach out to someone with cancer, do so without necessarily expecting a reply.
The other thing that is always welcome is a story of someone who went through cancer and came out the other side thriving. I feed on those stories and can never get enough of them. They are like little injections of hope. Share your hopeful stories!
How have you learn to Thrive since your diagnosis?
I have come to believe that trying to face up to death in your own way is actually a way of facing up to life. And that, on a related note, facing our fear of death is intimately connected to facing our fear of living, by which I mean, our fear of chasing our dreams, lest they not work out as we’d hoped. To really try and understand that our time is finite and precious, and to let this knowledge infuse life with preciousness – this is what every human ought to be doing, no matter how long they are going to live for. But this is very hard! I think one of the opportunities cancer provides is the chance to take stock of your life and ask yourself the big questions about what you’re doing and where you’re going. At the same time, it can help you to cherish the good moments, to tell the people you love that you love them, and to appreciate the gift of the tiniest, most elemental sensations – the wind on your neck, the sun on your face, a refreshing glass of water. This kind of heightened perception traditionally belongs to the saints and the poets. But it can belong to cancer patients too! I do my best to see my cancer as a source of teachings, as a shortcut to wisdom, and as a chance to grow. This attitude is essential to my thriving.
Is there anything else you would like to share?
It is an incredibly difficult art to balance realism and hope. And in my case, I haven’t always gotten it right. After I had completed treatment for my initial Stage III rectal cancer diagnosis – (chemo, followed by radiation therapy, followed by surgery), I was living in hope that I was well and truly through this ordeal. But I think that my hope led me to be a little too cavalier about following-up. My surgeon told me I didn’t really need to bother with a scan at 3 months post-surgery, since the operation had been a success and there was “almost no way we would see anything.” But he was wrong. And I didn’t think to push back and demand a scan for myself. It was easier to look away. I also hadn’t properly educated myself about the different ways that cancer can recur – both in terms of where and in terms of what symptoms to look for. This was another form of looking away. And I do believe it cost me a month or two of time, during which the metastases were growing unnoticed. (Though I make a point of not dwelling on this.)
So these days, I’m trying to be extra vigilant about monitoring all my symptoms and looking at my situation as honestly as I can, while also working to cultivate hope and belief that I can keep on thriving in the face of my illness. My partner and I call this “respecting the beast.” Keeping a close eye on the situation and checking in with your bodily symptoms is easily confused with “negative thinking.” But don’t confuse vigilance with negativity. Knowledge is power. And nevermore so than when selecting the right treatments for your specific cancer!
Last but not least, there is an important sentence that I say to myself a lot: “There are no statistics on Matthew Strother.”
I recommend readers to take my name out and insert their own.