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I vividly remember the day I learned my father had a brain tumor. I was staying with my mother at my cousin’s house, near the hospital where I was getting chemotherapy for my own cancer. I was about to go on a walk – I tried to do some kind of exercise every day because I’d read that people who stay active during chemo have better survival rate.
“Don’t go past the end of the block!” my mother shouted from the porch.
I was annoyed by my mother’s protectiveness. I was 38. I’d lived on my own since I was 18. I didn’t get it. Then, my mother told me that my father had just called her, and had told her that a CAT scan had revealed a mass on his brain. My mother was terrified at the prospect of losing both her daughter and her husband.
The family of every person who has brain cancer has their own story of how the tumor announced its presence, how something changed and then there were doctor’s visits and then the bad news, the worst news.
For many people with brain tumors, the first sign is often some type of unusual behavior or difficulty with normal everyday tasks. The first sign my father noticed was difficulty typing – he couldn’t figure out how to put letters together, and his fingers weren’t cooperating. At first, he thought he’d had a stroke. What the doctors found was Glioblastoma Multiforme (GBM), an aggressive Grade 4 brain tumor. According to the American Brain Tumor Association, the median survival for GBM is 14.6 months. My father died just shy of a year from his diagnosis.
A memory: My parents immediately fly to New Mexico when I tell them I’ve been diagnosed with Stage III breast cancer. They are loving, supportive, helpful. But then, something strange happens: my normally calm and reserved Dad flies off the handle because he can’t find batteries in my drawer and has a total meltdown, screaming at me. Afterward, he breaks down in tears. The only other time I’ve ever seen my Dad cry was when his grandmother died. It is totally out of character. Later, I realize that this was my first sign that something was wrong in his brain.
Like many other cancerous brain tumors, GBM does not respond particularly well to chemotherapy, as crossing the “blood-brain barrier” is notoriously difficult for chemotherapeutic agents. Depending on their location, some brain tumors are operable. My father’s wasn’t. But even people who are surgical candidates often have recurrences after tumor removal, particularly with aggressive gliomas like GBM. Most brain tumor patients are pumped full of steroids in an attempt to limit swelling; the steroids often cause a “moon-faced” appearance as well as behavioral changes that can include aggression, confusion, hallucinations, and inability to sleep.
The tumor itself often causes behavioral changes as well. Although each patient’s story is unique, GBM patients generally experience a rapid loss of cognition, essentially regressing until they are unable to walk, talk, or control their bodily functions – that is, if they survive long enough and don’t have a brain bleed or aneurism or some other effect of either the tumor itself…or its treatment.
If you’re reading Ladybud Magazine, chances are you support the use of medical cannabis. Oils, tinctures, vaporizing, edibles…All can work very well at stimulating appetite, decreasing pain, and improving a patient’s mood, without the nasty side effects of pharmaceutical drugs intended for the same purposes. Many people also believe that concentrated cannabis oils are effective at treating the cancer itself – and I don’t believe it’s an coincidence that the two long-term Glioblastoma survivors I know have been taking cannabis oil as part of their treatments.
A memory: I am walking behind my father as he navigates the steps between the house’s garage and kitchen. Somehow, his legs get tangled, and he falls down hard. “I think it’s time we installed some handrails,” I tell my mother. “No,” she says, “he doesn’t need that. He’s fine.”
However, cannabis oil itself isn’t a cure for Glioblastoma in most cases. For the two long-term survivors I know, I have also heard of dozens of other patients who have died despite their use of high doses of cannabis oil.
This doesn’t mean that cannabis cannot provide a cure, or at least a more effective treatment, for Glioblastoma – but the cannabis treatment protocol that seems most promising isn’t the kind of thing one can do at home, even with a medical cannabis card and the best concentrated oil in the world, because it involves injecting cannabinoids directly into the brain tumor.
A memory: My father sits in his wheelchair at the kitchen table. As his Glioblastoma has progressed, it has robbed him of his speech and his mobility. He is incontinent. My mother and I joke that the tumor progression is pressing on the “funny” center of his brain; he laughs a lot, which is certainly preferable to the state of some of the others in our Glioblastoma support group who cry all the time. But today, my Dad isn’t laughing; he’s aggressive. He’s been having issues with his blood sugar levels from the medication, and he’s taken to stealing sugar packets when he thinks we’re not looking. He’s also totally wired from the steroids. On this morning, I catch him stealing sugar, and when I gently remove a sugar packet from his hand, he shoves me hard and I fall. And then he starts to cry.
It has long been known that THC and CBD are anti-tumoral agents – in test tubes, cannabinoids work quite well to kill cancer cells, even aggressive Glioblastoma cells. Numerous animal studies have also shown the anti-tumoral effects of cannabinoids.
The first study of the antitumoral effect of cannabis on human subjects was conducted at Spain’s Complutense University in a 2006 pilot study of cannabis treatment for Glioblastoma. There were 9 subjects in the Complutense study, and standard treatment for Glioblastoma – oral chemotherapy and surgery – had failed them all. The subjects’ tumors were directly injected with a 96% THC concentrate, through an intercranial catheter.
The study showed that some of the subjects had a positive response to the cannabinoid injection. The THC injections were safe for all patients, with minimal psychoactive effect and no other detrimental effects outside of the range of traditional therapies. The researchers concluded that further study was warranted, including the study of other cannabinoids including CBD injections, the study of cannabinoids used in conjunction with pharmaceuticals, and the study of patients in the early stages of Glioblastoma.
A memory: “Uhmembame,” says my father, over and over again, sometimes whispering softly, sometimes shouting adamantly. Uhmembame, Uhmembame, UMEMBAME! “What are you saying, Dad?” I ask him. “Are you saying ‘Remember me’?” He shakes his head no. “Are you saying ‘a memory’?” Another negative head shake. “Here, try to write it down.” I handhim a pencil and a piece of paper. He struggles to grip the pencil and slowly, painstakingly begins to write. What he writes is a series of scribbles that almost looklike letters but – let’s face it – even if the scribbles had been letters, those letters spell ummumummn. His brain doesn’t work any more.
I am not a scientist, but my belief is that that injecting cannabinoids directly into a brain tumor could be far more effective than smoking or ingesting cannabis medicine. For patients with Glioblastoma, such treatment should clearly be an option. Compared to the devastating effects of pharmaceutical drugs used to treat Glioblastoma, it’s critical to remember that not one of the patients in the Complutense study exhibited any adverse effects from the THC.
A memory: We’ve just finished dinner with some family friends, a dinner filled with good stories and laughter. My father isn’t able to speak any more, but he still smiles and laughs, and seems to be following our conversations. My mother and I work together to transfer my Dad from his wheelchair to the hospital bed in the living room where he sleeps. This night, as we begin the chair-to-bed transfer, my Dad suddenly freezes and his eyes widen. “David! David, what’s wrong?” My mom is trying not to panic. “David, what’s wrong? Are you scared?” My father’s eyes widen more. He starts to nod his head, and stutters,“Ta-ta-ta-ta-ta-ta-ta-ta-ta” “LIE HIM DOWN!” I shout at my mother. “I think he’s about to have a seizure!”
Ultimately, it was the cancer drugs that killed my father. The drug Avastin, which is generally considered a “last resort” treatment after chemotherapy and radiation have failed, carries a high risk of internal bleeding. My father suffered a brain bleed that caused a massive seizure almost immediately after starting Avastin, and spent the following week in a coma before passing away.
Would it have been different if my father’s GBM had been treated with cannabis injected directly into his tumor? My family will never know, but I certainly believe so.
And so I fight for not just medical cannabis access on a state level, but for a change in the federal scheduling of cannabis, so that American scientists can do further research building on the Complutense study.
For me, Brain Cancer Awareness Month is a reminder of all of the people and all of the families who deserve better; we deserve to have this promising treatment explored. I advocate and I write, every single word in every single article about cannabis reform, in the memory and in honor of my father and in the hopes that someday a Glioblastoma diagnosis will not equal a death sentence. My hope in telling this story is that not only will people advocate for brain cancer awareness, they will also join in advocacy for cannabis reform.