Visit to the Juravinski Cancer Centre – For Glioblastoma Multiforme (Brain Cancer) – Post Revisited

In December 2011 my family took a trip to the Juravinski Cancer Centre in Hamilton. The trip was taken just to cross-off a possibility from the short list of possible actions that is given to you when you have been diagnosed with cancer. The list was my dad’s, which means the cancer was his. GBM, the most common type of brain cancer. It was a primary tumor, it grew very quickly, and it was located in a part of the brain that made it difficult to operate on and there would be very serious damage to the surrounding tissue. Surgery could be performed but since there was no chance that they would be able to remove all of the tumor it would grow back, likely at the same speed it grew in the first place.

My dad was 67, which placed him on the do nothing side of the surgery decision matrix. He was remarkably healthy for a man of that age, still very lean, strong, and in possession of all of the markers of good health. Apart from the cancer he was in great shape. During the conversation with the oncologist he said that they would be willing to perform the surgery because it was low risk in so far as my dad would live through it. The decision was my dad’s to make, but only after sitting down with the treatment team of doctors who would look his case over and give their honest assessment of what should happen next.

What struck me at the time and what I still remember very clearly is the flatness of each one of the doctors. They were nice, seemed kind and were honest. At no point did I or my family get a sense that they were being anything other than truthful. There was stuff they could do. The surgeon said that there was no way to get rid of the entire tumor without leaving the brain as a complete mess, but he could de-bulk it and doing this would give my dad a little more time. The radiation doctors knew they could destroy a lot of the remaining tumor, and this would buy some more time. The oncologist wasn’t confident that there was anything more that could be done because the blood brain barrier prevents most chemo therapy drugs from entering the brain. While there were some experimental medications that showed promise, getting into a drug trial was unlikely given my dad’s age. We were free to source and buy the drugs elsewhere but he wouldn’t be able to offer any support or advice. The feeling we all got was that they would go to bat as hard as they could, in the event my dad decided that he was going to treat it.

My brother asked what it would look like if my dad decided to take whatever treatment options were available and each doctor spoke dispassionately as they gave their best guess. The radiation doctors said 5 treatments a week for 6 to 10 weeks. Possibly a few courses of them over the remaining time. The first week wouldn’t be too bad, but from there it would get tougher as the tumor cells died, along with any other tissues that were impacted. It would start like a cold, then move into the realm of a flu and effectively become the worst sickness he had ever had. A week or so after the final treatment the body would begin to show signs of recovery, and my dad would start to feel better. After a few weeks he would be back to feeling cold and flu free. They avoided saying back to normal because that was never going to happen because radiation was only going to be used if surgery was performed. Whatever version of my dads brain existed before he went under the knife would be gone forever, so the radiation was going to be destroying the tumor along with a portion of whatever brain tissue remained.

The surgeon went next. His version was more intense because his intervention involved gaining direct access to the tumor. The radiation was a beam generated by a machine that penetrated the flesh and bone; which is kind of like shining a flash light on something. Surgery involved cutting the skin, peeling back the scalp, sawing through the skull, cutting a path through the top layers of the brain to get access to the tumor and then cutting and burning away as much of the tumor as he could while trying to avoid cutting away viable tissue and damaging the thousands / millions of tiny pathways connecting different parts of the brain to one another. Once the debulking was complete, they’d close-up, join the piece of the skull that was removed to the rest of the skull using metal plates and screws, flip the scalp back and stitch it back together. There would be antibiotics to prevent infection, pain killers to help deal with the pain associated with cutting through the skull and scalp – there wouldn’t be any pain from the brain because it doesn’t have pain receptors – and a few days of recover in the hospital.

There was an enthusiasm in how he described what he would do, and I was confident that he would do it really well. But whatever sense of optimism his enthusiasm created crashed when he talked about the recovery.

“We have no idea what we will have to do once we get inside. We’ll do more imaging before we go in, but there is no way to know exactly what the tumor looks like, what other tissues it involves and how it will have grown between the scan and the day we do surgery.” He paused to let this sink in before continuing. “Given all of that, the tumor is still be there and it will grow again. And it is brain surgery. We’re cutting into your brain and we will be removing pieces of it. No matter how careful we are, and I am very good at this and our team is excellent, your brain is never going to be as it is right now.” Another pause and then, “even as the tumor continues to grow now, you are still you. You won’t be after surgery. Removing pieces of the brain changes who you are and we have no idea what that will actually mean until after surgery and about a month and a half of recovery. There is a chance that surgery and radiation will buy you another 9 months, maybe 11.” Looking at the oncologist, who nods, then back to my dad, “great, you’re healthy, maybe 15. But it isn’t you who will have them, it will be the post surgery version of you and there is no way to predict who that will be, what they will be like and what they will still be able to do.”

The next few moments were longer than any before or since. The silence hung in the air, most uncomfortably.

He was very good at his job though, and took a brave next step. “If I had a relative who was just like you, and this was their brain scan,” holding up the printed image of my dads tumor, “I’d help them get their affairs in order and then go and spend a month or so somewhere hot and sunny with them.”

The oncologist spoke next, not giving much time to let what the surgeon had just said sink in. “There were a couple of things they could do in terms of medication, but the powerful chemo therapy drugs that have a strong track record of destroying cancer sell couldn’t cross the blood-brain barrier, so there wasn’t anything that he knew would work. We’re looking at surgery, radiation and whatever medication makes your remaining time easier.” And that was more or less that.

My dad decided against surgery and that was the end of it. There wasn’t going to be a cure so why bother with all the hassle of having to recover from brain surgery, maybe having to relearn how to walk or talk or think only to die in a few months anyway? Didn’t seem to him to be worth the inconvenience. He was still himself and would be until he died, so he got after enjoying whatever remained.

I haven’t been back to the Juravinski Cancer Centre and haven’t spent any time thinking about that day until about an hour ago when I reread the original post. What hit me was the paragraph about how we filled the half hour or so between the initial conversation with the oncologist and the group chat with the treatment team:

Some food at the cafeteria / lounge that had a piano but no singer. The family chats back and forth about stuff. I’m looking around and starting to feel strange because as I look at each group of people I’m trying to guess which one of them has cancer. If you haven’t played this game, you don’t really win when you guess correctly. There’s a table of 3 people, one is dying, the two that aren’t are going to be grieving their asses off soon. You can’t guess who is who without looking at their faces and when you do, you see a 21 year old son with his mom and grandmother, mom’s in a wheelchair because she has cancer. I felt rage deep inside that made me want to wreck something for what’s about to happen to this poor kid. I suddenly wonder what type of cancer killed the cafeteria singer and as I do, my eyes meet Des’ and he’s just seen the kids future too. I glace away towards my dad unwittingly winning another round of the stupid game my brain is playing.

I do not remember writing that nor do I remember thinking it. In fact, I have no recollection about that moment whatsoever. I can relate to it, it sounds very much like something that my brain would do and the words are almost identical to the ones I would use to describe such an experience.

I remember a conversation with my dad about art. I was sounding off about a painting being really expensive for just being a picture of something and he said “son, you have no idea what that picture actually represents, or what it represented at the time. Sure, it’s a picture of a scene, and to you and me it is a really good picture. It looks like what it is a picture of. But imagine that this was the first time someone did that, would that make it more important?”

I didn’t know what he was talking about and he knew it so he continued, “before that picture was painted, people didn’t paint pictures like that, they painted pictures like how they painted pictures. That artist saw that paintings didn’t look like real life and that real life didn’t look like the paintings and he changed that. He saw something that was always there but no one else had ever seen, and if they had, they had never painted it.” He could see that I was still kind of lost so he added, “art is a strange thing son, the artist who created that was the first to paint that way and he was probably laughed at for how bizarre it looked compared to everything else. But it was art because it captured something about reality that no one had ever captured before and after he did it, it could not be unseen.”

That is how I consider the paragraph I quoted above. I wasn’t the first person to have that experience, and I am probably not the first person to put it into words. But I feel good knowing that I captured a moment of humanity that is uncommon but likely experienced by everyone who sits in a cancer center, life on pause, waiting to hear from a team of doctors who are there to offer up their advice about what they can do in response to the cancer that has taken hold. It’s peaceful, still, and extremely short lived. Life starts up again as soon as we gather in the room, and this moment fades into the stew of memories that shape who we become, even if time causes us to forget that it happened.

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