What it feels like: Living with GIST

Maureen went from feeling completely healthy to hearing a doctor tell her that she had gastrointestinal stromal tumours, a rare cancer that affects 1 in 100,000 people.

Emma Jones 15 minute read January 25, 2022
Depressed

Like many people who get a cancer diagnosis, it was absolutely a shock and a surprise. GETTY

When Maureen* was told she had a type of cancer known as GIST, she had to ask the emergency room doctor to write it down so she could take a moment to process the shocking information. After all, just two weeks before, Maureen had felt perfectly healthy.

Gastrointestinal stromal tumours (GIST) are a form of cancer —soft tissue sarcomas — that most often occur in the stomach and small intestines, specifically in cells that help the muscles move food through the digestive tract. Many patients may not have any symptoms associated with GIST, however, others may experience pain in the abdomen, blood in their stool or vomit, fatigue, and feeling full more easily than normal.

GISTs make up only one per cent of gastrointestinal cancers; a study from the University of Calgary found the incidence of GIST is less than one per 100,000 people (0.91/105).

Having taken a step back from her career to focus on her health, Maureen spoke to Healthing about how connecting with the GIST Sarcoma Life Raft Group helped answer her questions and  refocused her efforts on supporting others and how educating yourself about a diagnosis leads to empowerment.

This interview has been edited for length and clarity.

What led to your diagnosis?

Like many people who get a cancer diagnosis, it was absolutely a shock and a surprise. I was trudging along in my job, and I felt a little bit flu-like on a Thursday. I taught high school drama [at the time], and I thought that it was just the flu, I’ll be fine. I didn’t feel great at the end of the day, and I spent Saturday in bed. Sunday morning I got up, and still not feeling great, I went to go to the bathroom and I felt and heard a pop in my abdomen. [I] looked down and basically my abdomen was expanding. I said to my husband I think I need to go to the [hospital].

[Once we got to the emergency room, the doctors] did an x-ray quickly and from what they saw they said they thought it was something to do with my appendix, but they weren’t sure. So they sent me into the bigger hospital in Edmonton and things got serious, very quickly. It was determined that something had burst, they just weren’t too sure what. I spent nine days in the hospital before the surgery because they didn’t know what they were dealing with. I ended up having surgery on the ninth day.

They removed a volleyball-sized tumour, still not recognizing what it was. [They] sent it away for pathology; six days later, before I was released from the hospital, they told me it was GIST.

Had you been feeling any pain?

I wasn’t [in pain] until the pop — the pop was the bursting of the tumour. I had no signs. This tumour is quite a jelly-like tumour; it’s a soft tissue sarcoma, so it is not typically hard.

So no, there were no symptoms looking back. My story is not unique. Often with GIST, we are quite advanced and our tumours are quite large before they’re diagnosed. Often the diagnosis comes [after they burst]. Even in hindsight looking back, was I tired? Was I not feeling up to par? No. Up to that point I was healthy. Like I said, I had been at my job and everything felt fine.

What was it like being in the hospital for nine days without a diagnosis?

Well, the doctors were doing various tests and they put a drain tube in because my abdomen had filled with blood. They were also giving me pain medication, so it was a blur for those nine days. I was really anxious, of course, because we didn’t know what it was.

Once the diagnosis came though, it was startling and very shocking because the word cancer had never been used in that prior nine days. It was an infection, they had thought.

What went through your head when you heard the word GIST?

Terror. Shock. Disbelief, because I had been healthy.

I can remember the emergency room doctor sitting down with me and he used the word, gastrointestinal stromal tumor; he said it very quickly. I remember [asking] Could you repeat that? Can you say that again? It wasn’t a cancer that I had heard of before and there were lots of letters and lots of words. I just remember saying to him, say it again. Can you say it again? And I finally got him to write it down so that I could look at the word and recognizing then, okay, it’s in my intestines, a gastrointestinal…Okay, I get it.

[The doctor] then left and came back about an hour later when my husband had arrived at the hospital and he looked at me and he said, ‘You’ve been googling haven’t you?’

What did your Google search find?

Super scary because the word ‘rare’ kept coming up: This is a rare cancer, very few people have it. Not a lot is known about it. Of course, the first thing you look for is survival. The three to five years prediction wasn’t necessarily that great. I didn’t search for medications right away, I was just trying to understand what it is and what the cause was. I think looking for cause was a big part for me. I kept asking myself, What happened? What caused this? What did I do to cause this?

This must have been tough news for your husband too.

I think my husband felt like I did: shocked, definitely at the beginning. And the big question of why, what would have caused it, and where did it come from? You know, there are some cancers that have some environmental factors associated with it — GIST is not one of them. It is just a change in the genetic coding — it’s a fluke. I think that was the hardest part for me, coming to that realization — my husband as well — that there was nothing that I had done. It was just something that had happened.

What happened after the diagnosis?

I had to stay for another six days in the hospital because of the surgery and because my bowels had not woken up after the surgery. I lost about six inches of bowel because the tumours had attached to the outside of the bowel. Until I could go to the bathroom, I couldn’t go home.

I remember being desperate to go home and be able to process [this] at home. You know, hospitals are never great for sleep and I just wanted to be at home. I would ask the surgeon every day if I could go home.

What was recovery like after having part of your bowels removed?

I’m cut diagonally for my entire length of my abdomen because the doctors didn’t know what they were dealing with. They knew it was a large mass, but they didn’t know what it was and they knew it had ruptured. Recovery was slow. Definitely.

Also, when you lose part of your intestines, things change with your eating. You have to  retrain your body to figure out what foods are working for you and which ones are not. That recovery time after surgery is really important because it does give you time to heal your body.

How did GIST change your plans for the future?

For me, 30 years working at a career that I absolutely loved, I was bound and determined to go back to work. I took the three months off after surgery and I did return to work. That was a struggle for a lot of reasons, but I think the big one was that your body just takes time to recover after surgery. But I was happy to be back and have some normalcy to my days. I was diagnosed in October of 2018, I went back to work at the beginning of February 2019  I taught until June 2019 — five months. I was happy to be back because it was normal and I was moving forward.

But in June, I had metastases to my liver. That meant a doubling of my chemotherapy drug and that just…that was too much. I knew I wasn’t going to be able to work and do what I  need to do to stay healthy. So at that point, I went on to long term disability and that’s where I have been ever since.

It must have been hard to leave a career you loved so much.

I truly loved what I did and before my diagnosis, I had no thoughts of retirement. I wasn’t on that plan where I was going to retire as soon as I turned 55. I [thought I would] retire when I was ready. But I was having so much fun because I got to do drama every day and [I] really connected with my drama kids — being back was really helpful for distracting my mind so I wasn’t so focused on my illness. But when I found out about the metastases to the liver, I thought that my universe was reminding me that time could be really short, and that maybe my focus needed to be in a different place.

You say you are fortunate to have this cancer. Do people think that’s a strange thing to say?

I am very, very fortunate that I have this type of particular cancer and I know people say that’s crazy, but the treatment options for gastrointestinal stromal tumours are quite specific.. We take a daily chemotherapy pill (gleevec) — I take mine twice a day because I’m on double dose — [that] specifically targets those tumours.

I am still what they call NAD — or no evidence of disease — in the area where my tumour was. But I do have tumours in my liver now — there are many, some are about the size of a pencil eraser, some of them are the size of grapes. They are being controlled right now with medication.

There are side effects to the medication, and they’re awful, but it’s not [the kind of chemotherapy] where you go in to the hospital and have treatment for a period of time, you’re super sick, your body recovers and then you go back in again. This therapy is more targeted, and it’s daily for the rest of my life.

But I’m grateful that’s the regimen and that there are different medications that I can continue to take when this one stops working. And it will stop working — they all do — and then I will go on to the next one.

So, I say I’m fortunate to have this type of cancer; I’m not fortunate to have cancer. In fact, my surgeon, when he came in to tell me what it was, [he] said if he had to pick a cancer to get this would be one that he would choose because of the treatment options. That made me feel a little bit better.

So you had to not only adjust to a a life-changing diagnosis, but you also had to adjust to taking a medication that was hard on your body.

There are days where…there are just hard days where I realize that every day, for the rest of my life, every 12 hours, I have to swallow a pill that gives me side effects that are debilitating. And then there are other days when I think that every day, every 12 hours, I get to take a pill that saves my life. So it’s that dichotomy, right? You’re taking something that is super hard on your body, but you’re taking something that’s keeping you here. And I’m grateful for that.

Tell me more about how the medication affects your life.

How much time do you have? [laughs] This is me coming to you without complaints, because I’m here, so I’m happy. But my biggest one is chronic daily diarrhea, and it’s not pleasant to talk about, but it is what it is. Also, the fatigue from the chemotherapy is dramatic — I was a person who was up with the birds, and I would stay awake until 11 p.m. or 12 p.m. at night. That’s really difficult to do on chemotherapy. So afternoon naps are pretty much a requirement.

‘Your life may look different, but there’s still joy in it’

 

I say to my husband sometimes that I’m hostage to my body. If it decides it’s having a really bad day with diarrhea, then that’s what you’ve got to do that day. I no longer get to decide what I’m doing in a day, my body makes the decision and then I adjust how I do things.

I also have eye edema — that’s swelling in the eye area. Muscle cramps are another big one, especially if you don’t stay hydrated and moving. I do 30 minutes on the treadmill every day, just a very slow walk pace, but enough to keep the fluid moving so the eye swelling is lessened but I also want to keep my muscles from cramping so much.

And then there are other little things, like thinning of the skin and bruising really easy. There’s some hair loss, but not dramatic hair loss. You don’t go bald with this particular chemotherapy, but you do lose a lot more hair than you would normally. It’s quite shocking when you take a shower, and you suddenly have handfuls of hair. I had quite significant hair loss at the beginning, and then it levelled out. But when I had to double my dose, that period of  hair loss happened again for about four months. It’s scary, because you think you might lose it all, but you don’t.

I do get a lot of eye bleeds because the medication creates leaky capillaries. They are quite scary looking because the whole eye can look bloody, but they’re quite harmless in terms of affecting your vision.

That sounds like a big adjustment.

I guess the adjustment that I had to make was the fact that I was no longer defined by my work and my job, and what I was going to do in my career path. I was now being defined by what I did to stay my healthiest, to be here for my family and my friends, and for my life. So the adjustment came from switching from a career into living.

It’s a huge mind shift and it didn’t come overnight. It’s been three years now, coming up to my fourth. I’ve done lots of work with a psychologist who works specifically with oncology patients, and he has helped me step through the cycles that we go through [after a life-changing diagnosis]. The process of grieving, and then finally, getting to acceptance, and now what can I do with that acceptance?

What made you want to get involved with advocacy and patient support?

Education; being a teacher, of course. When people have an education, they become empowered. And it’s that empowering piece that I think is important. I am a really private person and so I haven’t swung from the rafters and announced to everyone that this is what I have, but I do think that education is key and you can share what you have learned with others.

Three years ago when I was first diagnosed I was so naïve. I asked questions like, What does NAD mean? What is gleevec? All these things I now know like the back of my hands. When there are new people asking these questions, I am glad for the GIST Sarcoma Life Raft Group because I now have those answers, and I have a place to go to get other answers. And I can share that with others and they hopefully will feel like I did, relieved that somebody else knows about this and you’re not alone.

What brings you joy?

My dog brings me joy every day. The dog is a little bichon shih tzu and he’s so happy that I am home full time.

Joy is something I worked hard on with my psychologist — talking about what will now bring me joy when so much of my identity in my life was wrapped up in my job. Things that I didn’t get a chance to do that I would have liked to have done when I worked full time, I now have the ability to do.

I started with family, helping out. I reached out to my mother-in-law, who I hadn’t spent a lot of time with. My father-in-law passed away — she had been with him for more than 60 years and was really scared about being alone through the process of all the things that need to be done after someone passes away. I was able to walk that walk with her and help by being present.

That led me to thinking what else can I do? I would say service brings me joy. I’m sad because COVID has really changed my ability to be able to be out with people as much — especially when you’re on chemotherapy, you have to be a bit more careful. But one of the things I really want to do is to work with animals. We have a rescue right here in my small town and they work with mature senior dogs. That’s something I hope to be able to do.

What advice can you share with other people who have been diagnosed with GIST?

If I could say one thing to people with GIST — or with any cancer, but especially those with a rare cancer — is not to forget that question of hope. When you’re first diagnosed, you always think, How long am I going to be here?  What I’ve discovered over the last more than three years is that there is hope. Your life may look different, but there is still joy to be found in it.

*Maureen has requested her last name not be used.

Readers looking for support with GIST sarcoma can check out the GIST Sarcoma Life Raft Group and GIST Support International (Maureen recommends also checking out their Facebook group.) Therapy for oncology patients is available through the Cross Cancer Institute in Alberta; check with your oncology centre for local oncology therapy services — many institutes subsidize these costs.

Emma Jones is a multimedia editor with Healthing. You can reach her at emjones@postmedia.com or on Twitter @jonesyjourn

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