note: this was written last week; i am a bit late to publishing. i’m no longer sick – the cold has mostly passed – so that’s a win!
i’m sick. and i’m feeling sorry for myself. i’m coming to the end of a week off. a glorious full week off. the goal of the week was to rest, relax and have a nourishing staycation in bangkok. instead, i’ve been blessed with a brutal cold which has me feeling snotty, sneezy and generally abysmal. i am not even sure how one can catch a cold when one is getting tons of sleep, and not really seeing any other humans. alas. i was told that being on immunotherapy actually makes people immune-compromised, making it much easier to get sick. i’m surprised this super-human life-saving drug can’t kill cancer AND kill germs – is that really too much to ask? it is also funny (not haha funny, but ironic funny), that i am surrounded by all sorts of snotty-face germs every day at school, but i get sick when i am on holiday, spending most of my time alone in my apartment.
this got me thinking about side effects. why do side effects have to be so undesirable? the possible side effects of the drug that i’m on were so long and so dreadful, that some of them felt worse than dying from cancer! the word side is so pleasant in other contexts. for example, let’s walk beside each other. doesn’t that sound nice? or, let’s go outside to play. YES, LET’S! but as soon as we talk about side effects, we all want to crawl into a hole and cry. wouldn’t it be nice if side effects were universally pleasant? imagine….
in addition to treating cancer, taking this drug may cause you to:
- develop the self-control to stop any bad habit, including nail biting and/or hair twirling
- have regular surges of creativity, leading to increased stamina and writing that is nuanced, engaging and humorous
- gain a lifetime immunity to cold and flu virus’
- grow naturally beach-wavy hair from your head, while reducing growth of unwanted chin, armpit and bikini hair (a girl can dream, can’t she?!)
for those science and/or medical folks, the drug that i’m on is called nivolumab (also known as optivo). i have alluded in other posts that i have tolerated it fairly well so far, but i do have some nagging side effects. admittedly, the side effects of immunotherapy are nothing compared to the side effects of chemotherapy. i have all my hair, i have not lost considerable weight, and i don’t look sick. i have talked to a few other people who have been on my drug, and what i have heard has been right across the spectrum –some people have had to go off of the drug due to complicated side effects. others have felt almost nothing. so far, i’ve only been aware of two:
fatigue
someone commented on one of my instagram posts saying that i would not remember most of this treatment year, because i’d likely be asleep for almost all of it. i’m not quite that tired; but i am tired. and, it is not a typical sleepy tired. it is a whole body exhaustion that actually feels like a fog. when it hits, i feel it in my head – a heaviness – and i need to sit down, or lie down. sometimes i don’t recognize what it is and it makes me feel a bit anxious, because it isn’t a typical feeling of tiredness that i recognize. the worst is when i miss my cues: if i am having trouble with word retrieval, or having trouble staying present in a conversation… those are clear signal that my exhaustion line is about to be crossed. you know when toddlers get overtired, and then they can’t fall asleep? that happens to me when i hit that wall.
in terms of energy level, i am certainly not functioning at my typical pace. it turns out that immunotherapy side effects are often cumulative, so it isn’t surprising to feel more tired as the months go by; and i’ve been on treatment for 8 months. i would say that i’m functioning at about 60 or 70% of my pre-treatment energy, which hopefully isn’t too noticeable. i certainly notice it, because i don’t have much energy for much else on weeknights when i get home from work. as some have said, welcome to how the other half lives! my 70% is probably 100% for many.
i noticed after my recent scans results that i had a surge of energy. getting not-bad-news is good for the spirit! and, if i get into a routine of being busy, i have more energy. taking naps and resting actually just makes me more tired. however, the day of my infusions, the fatigue is debilitating. in fact, i basically have to go home and get right into bed. getting up in the morning is hard, especially when it is early. some days it feels like i am dragging my body and i’m sure the extreme heat in bangkok doesn’t help.
as a typically high energy person, the fatigue makes me feel a bit lethargic and bored. i just try to remind myself that this is only temporary.
digestive issues
another note: if you are grossed out by poop, you may want to skip over to the next section! we are all human, and it isn’t like i’m the first person in the world to have diarrhea. but – fair warning, i’m not going to hold back.
my digestion was fine until january. it started gradually. i noticed my stool softening. i thought it was because i was making a lot of smoothies upon my return to bangkok. but then, i ordered my favorite thai mushroom salad at a restaurant, and i noticed the next day that the mushrooms literally went through me whole. i started paying close attention. i seemed to react poorly to spicy food, chopped salads, anything fibrous. i tried to eat more solid, thicker foods, and i noticed that would help slightly with my output. i was worried that my oncologist wouldn’t let me have my january treatment, so i downplayed it at my first appointment with her. but over the months, it became clear that it wasn’t getting better. my oncologist told me not to worry too much unless i was getting dehydrated, having to wake up in the night to go, or losing significant amounts of weight.
i essentially have permanent diarrhea. i’m that person running to the bathroom after my morning cup of coffee. i’m that person tracking her output on an app (YES, there is an app for everything!) to try to notice patterns. i’m that person who is afraid to fart because i don’t have full confidence that it will only be air!
the worst is, that everything that is deemed healthy to eat when you have cancer (flax seed, cruciferous veggies, brazil nuts etc), cause me the worst problems. i’ve tried taking probiotics, using digestive enzymes, eating smaller meals, relying more on bread/pasta based meals, but nothing has relieved it.
i know i’m not alone. i hear that digestive issues are a common side effects of immunotherapy. as your immune system is let loose, in addition to killing cancer, it often attacks the gut. if it gets really bad, it can lead to colitis, which requires hospitalization. i follow mine closely, and so far, it hasn’t been severe enough to be considering steroids or a hospital visit.
i consulted with a naturopath last week, and we decided that i needed to move to a low residue diet for 2 or 3 weeks to offer my gut a reset. a low residue diet is literally the opposite of a healthy diet: cutting out anything fibrous, and limiting food consumption to bland foods like white rice, white bread, white potatoes. i bought a loaf of white bread this week, for the first time in years, and i shuddered. this is so not the diet for a smoothie-loving vegetarian.
let’s hope this works – i really don’t want 5 more months of running to the bathroom. it is total shit! ha.
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in the meantime… i’ll take that fatigue with a side of mashed potatoes?
*yet another note: this photo was taken by my brother at the museum of illusions in toronto, in december 2018. glad my brother is by my side through all of this. AND – that girl looks strong, not sick!
