OK it’s  time for an update. My surgery was on June 27th and at that time the neurosurgeon, Doctor Fleetwood, told me he believed he got all the visible and hopefully most of the tumour. The tumour was sent to pathology and he told us that it was likely cancerous.  If you don’t want the agonizing wait that we had, click here to skip ahead.

I was released from the hospital on Sunday June 30th and happily went home feeling better than I had in months. My brain was working in a way it hadn’t for a long time, both with thinking and with motor skills. I started weaning off the steroid, sleeping better, and, by the end of the week, the deep depression that I had been feeling for months, maybe even years, had completely vanished.

Meanwhile, on July 2nd I received a phone call from Dr. Fleetwood, letting me know that the Vancouver Island pathology lab had identified my tumour as a primary [which means that it originated in the brain] malignant glioma. However, he told me, there were a few things they weren’t sure of, and they wanted to send the sample to Vancouver for a second opinion. He told me that I would hear from the local BC cancer clinic soon, and that they would generally handle things from here on.

I spent a lot of the month of July attending follow up doctor’s appointments which included having my stitches removed, seeing my ophthalmologist, and backing up on several other appointments that I’d had along the way. For instance, in the act of searching out what was wrong with me I had had a psychological assessment done; the results of the assessment were in for a final review, and I met with the doctor announcing plot twist- turns out I had a brain tumour!  I ended up having approximately 3 of these appointments with a psychiatrist, a naturopath and a psychologist.

As I was feeling better than I had in a very long time, we chose to celebrate that and threw ourselves into Kathleen and Matthew’s wedding- for more details on the wedding see Morgan’s post – Easily in my top three weddings. 

Once the wedding was over it got quiet briefly. We cleaned the house, did some yard and garden work, and then we got kittens, Casey and Hobbs – a pair of brothers from Salt Spring island who have brought great joy to our household.

And we continued waiting. As many of you know, neither Morgan nor I, nor the children we created, work well in a vacuum without a lot of information.  Although we are prepared to turn on a dime, and go with the flow, we like to start with plans, back-up plans, escape plans, and possible variations based on as much information as we can gather.  The six weeks spent not knowing what was in my head, and only knowing “Don’t Google!”  Everybody’s tumour is unique and the internet is extremely terrifying when you Google ‘brain cancer’.  

We did our best to continue living in the present and celebrating the present, but it was really hard not knowing how to plan for the future. On the trip back from picking up the kittens, my phone rang and, once again, it was the surgeon. He was letting me know that the Vancouver pathology lab was also questioning the results, and they wanted  to send my sample to the US to the National Institute of Health for further study. In order to send any part of my body outside of the country they needed my verbal permission. I immediately gave that permission, and the wait continued.

The following Friday, I finally received a phone call from the new patient intake with the BC Cancer centre. They were calling to set up an appointment with me with the radiation oncologist for the following Thursday afternoon. We had almost a week to wait.

We did 4 puzzles to pass the time and pretended the wait wasn’t killing us. Finally, the appointment comes, not surprisingly we arrive 20 minutes early, this allows me to fill in the necessary forms, and almost on time we are called in to weigh in and measure my height. Then we were put into a waiting room and told that the doctor will be with us soon. Almost half an hour later, a resident comes in, asks a few questions, does a few tests, and continues to tell us nothing. We are sitting in the most uncomfortable chairs in the entire world, and I say to Morgan “I better not learn I’m dying in these chairs.”

Finished with us, the resident goes to get the doctor and says they’ll be right back. Half an hour later the doctor finally shows up, with the resident, and he takes another 5 minutes pulling up the chart and the MRI’s. He finally (finally!) tells us that I have a glioma and in particular that it is a grade 3 Oligodendroglioma (aka Oligo, aka OG). This is a reasonably rare form of brain cancer, and we are becoming minor experts on the markers, the history, the treatments, etc.  The great news is that I have all the markers that suggest treatment will be very successful – the bad news is I have about 9 months of treatment ahead of me.

Finally, we had something to research and research we began; Morgan is somewhat of an expert now and the news looks really good.  A week later, we met Dr Fundytus, my medical oncologist, and his med student Kendrew.  They were late for my appointment because they were talking about how interesting and rare my tumour and its markers are.  Dr Fundytus shared with us that he was called to triage my tumour, before all the additional testing, and he didn’t want anything to do with it. But, after all the tests, it turns out that it is simple, straight forward, and very treatable – he thinks we may never see a recurrence; but it’s cancer, so no promises can be made.  A key part in avoiding a recurrence, is a fairly intense chemotherapy approach called PCV. So, for those of you who are interested, here are the treatment plans.

Treatment plans

Radiation treatment begins August 26th with 33 consecutive days of radiation (weekends and stat holidays off) that will finish October 11th.

After the radiation, I start six courses of PCV two weeks later and, if all goes well, I will be completing by mid-July 2024.  

The side effects of both treatments range from deep fatigue to downright scary – after all, as my medical oncologist says, you are getting your brain microwaved and who can predict what will come of that.  The good news about side effects is that there are many treatments for those side effects, and not all side effects actually happen.  

Where are we now?

We are in a hopeful place, connected to a great system, but totally unsure what the next nine months will bring.

How can you help?

I have started an Amazon wish list with a few distractions (puzzles mainly) and funny things like gentle shampoo, caps, etc.  Please do not feel obliged, but we are learning to ask for help.  If meal support is your interest, please consider gift cards for Fresh Prep as we will be trying to keep a healthy diet. 

If you are in Victoria – please come visit!  For the radiation portion of this event, we will continue to have an open door household – just be prepared that I might be napping, or cranky.  During the chemotherapy portion of this event, anticipate a COVID-esque household: don’t come by if you are sick; expect to see masks, or be asked to wear one;and  anticipate extra handwashing and germ controls.  Please text Morgan or myself (DM if you need the number) to see if it’s a good time to drop by.

Again, radiation, foregoing any bizarre reactions, we are anticipating to be non-challenging.  Chemo is unknown and we will provide regular updates. 

Thank you for taking the time to read!  Trying to get around to update each person individually is getting very challenging, so many updates will be posted here in the future.  Please feel free to share this with others who are interested!

Thank you again from all of us.