living with a gastrointestinal stromal tumour

there are rarely any symptoms of gastrointestinal stromal tumours ( gist ), a form of cancer that occurs in the interstitial cells of cajal, a type of nerve/muscle cell combo that exist in the stomach and small intestines. in later stages of the tumour growth, some patients may experience blood in their stool or vomit, fatigue and abdominal pain. gist is also rare, with less than one in 100,000 canadians diagnosed each year.

chatting with healthing about her experience beating gist once and now taking the cancer on again, macleod had this piece of advice to offer: “d on’t keep your diamonds for special days,” she says. “every day is a special day. ”

  this interview has been edited for length and clarity.

what led to your gist diagnosis?

it was a very, very long afternoon. i think i saw an internist first and they hooked me up to blood pressure monitors and all that kind of stuff. he asked me a question, and as soon as he said this to me i was like, why didn’t i figure this out? [he asked if i had] dark stools . i know that’s internal bleeding, but i never connected it.

when they told you that you had a tumour, what went through your head?

i couldn’t grasp the information they were giving me. they were telling me this looks like cancer in your duodenal , and, i mean, i’ve never heard of the duodenal. [ the duodenal is the top part of the small intestine, located right next to the stomach.] i didn’t know what that was. i tend to need to be able to know where to fit the information in, and since i didn’t know what that was, i had to ask several times. but mostly i was just stunned.

it’s interesting to me that my family doctor and the surgeon came in, spoke to me and told me this news, and i was on my own. i was alone — well, i was in a room with two people. there was a woman on the other side of the curtain, but she was a total stranger. so, i just really struggled with trying to wrap my head around what this was and what does this mean? i was in a place that i just didn’t know how to process, i didn’t have it sorted out. i mean, i could start to think about, you know, how am i going to tell people?

how did you tell your family?

what were the next steps after that?

waiting on a referral to a surgeon who was experienced in handling this kind of tumour. surgery was the next step. it took two months to get to that spot, i think because the referral maybe got lost in the cracks. six weeks or more had gone by and my family doctor was like so you’ve had your surgery? and i’m like … no.

he had his staff follow up with that and within days i was travelling to toronto [from where we lived, in a small community just outside of orillia, ont.] to see this surgeon. he actually was a transplant doctor. [for] the kind of surgery that they expected i would need, i needed somebody who had that kind of experience.

you continued to work while you were waiting to hear from the surgeon — how did you concentrate on work at all?

for me, it was i know this, i can do this . and that there is the unknown and i’m just struggling to cope with it. but this i can do. so i went to work and nobody at my work knew. obviously, i was in hospital for a couple of days, but i returned to work and just carried on as if everything was fine. and i think that was part of my coping mechanism.

but then you had to change gears very quickly, because all of a sudden you were seeing a doctor, being scheduled for surgery the next week.

yeah, i got a phone call at work saying y ou’ve got to get in here (to my local hospital) and you need to pick up your cd that’s got all your scans and test results on it and you need to take it with you because in two days you’ve got an appointment at 8:30 in the morning in toronto .

was it stressful being told you’re going to have surgery right away? 

when i think back at that first appointment with the surgeon … we walk in, we hand the cd to whoever, and he looks at that. and then he comes into the room and talks to my husband and i, we’re nodding our heads: yeah, we got it. but i think he was probably looking at us as i’m trying to tell you how serious this is and i don’t think it’s sinking in.

the day of the surgery, what were you thinking?

our faith has played a huge part in it. so, for us, god’s the one in control, you’re the instrument. you’re going to be doing whatever but, at the end of the day, the control isn’t ultimately ours. i think one half of my head was kind of like, you just do the next thing .

but after that, we walked out of the hospital and sat outside on a bench and had the conversation of what if i don’t make it? what if something happens?

and so the time of surgery arrives. and i walk into the operating room, climb up on the table, and then i’m out. i think i was just thinking what’s this going to be like when i wake up? i had asked a friend of my husband’s to come, and i was hoping he would get there sooner rather than later so my husband wasn’t spending those hours on his own, because they warned us it would be like an eight hour surgery or so. those were some of the things running through my head: concern for him. because if i didn’t make i was going to be fine — it was everyone else i was worried about.

and how was the recovery?

[when i got home] my sister came and stayed with me. she’d make me a sandwich and i’m like, okay, that’ll do me for four meals. that would fill me up because when they did the surgery, they removed the bottom third or something of my stomach. i had a much smaller stomach and i needed to be careful how much i put in because that bottom of my stomach had been stitched together.

did you have to change your diet otherwise?

are you still going through treatment now?

in 2019, i [was in the emergency room] for something totally unrelated. i was booked for a ct scan, and that ct scan showed that i had something in my liver. that was the second shock. i mean, it had been 12 years. you just carry on. you think i’ve missed the bullet .

how did it feel finding out the cancer had spread, after 12 years?

there were lots of days those weeks when i wasn’t that great. i did wonder, how will it go this time? what side effects would show up? i think the real concern i had was would the [medication i was on] handle it this time? or would i have to move on to other medications?

did you have surgery again?

and so where are you in your treatment now? 

in this cancer, they’ve come a long way. i see what’s happening in the cancer world around me, you know, i read things or see the new stuff. i know a lot of people think why have we poured billions and billions of dollars into cancer research a nd we still haven’t found a cure?  there may never be a cure for some cancers, but there’s amazing things in that research that they’ve learned.

and what do you like to do in life that brings you joy?

readers looking for more information on gist sarcoma can check out the gist sarcoma life raft group and gist support international .

emma jones is a multimedia editor with healthing. you can reach her at  emjones@postmedia.com or on twitter @jonesyjourn