While this phrase may seem reminiscent of an Agatha Christie tale, this is actually a good news story (meaning, no one is murdered!)
It has been a while since I last posted any major updates, but something remarkable happened recently that I wanted to share. You may recall that at last count there were five pesky tumours making their home in my brain. Well back in January 2023, the radiation oncologist told me that it can take about a year for the radiation to fully take effect… and he was right! The good news, or maybe even the great news, is that one of the tumours has been eradicated by the radiation treatments! While it was the smallest of the tumours that has been “resolved” (that’s the official clinical term), I’m still calling it a big win. Maybe Agatha Christie would suggest that a “murder” did actually occur… 🙂
Alongside this, the other four tumours are holding steady (not growing), and no new ones have appeared – all of which is fantastic news!
And in non-medical news, I had a busy past six months, but some of the memorable moments were: I ran a half marathon at Mt. Rainier, I rediscovered my love of skiing, and… I almost forgot… I finished my MBA!
Now, what to do with all of my newly found free time…? I’m open to suggestions… adventures in 2024 await…!
I’ve been waiting for this news for over three months… I recently received the results of the first post-radiation brain MRI… (insert drum roll)…there are no new tumours in my brain, and all of the existing ones have shrunk by about 50%…woot woot!!
The other good news is that I do not need to have any further treatments at this time…I get to resume normal-ish life and can plan some travel for the future. I also confirmed that my cancer is technically brain metastases, not brain cancer… this is my 2017 breast cancer that has reappeared (metastasized) in my brain. So yes, I do have metastatic brain tumours, which are cancerous and living in my brain, but I do not have a primary brain cancer… which is a good thing!
The funny thing about this “it’s technically not brain cancer” is that I may have recently had the brain cancer ribbon permanently inked on my back… this might be splitting hairs, but I’m kind of thinking that the grey ribbon now needs to become pink…or I can leave it as is and have a funny story to tell…
The other big question that I asked the oncologist… and I’m sure some of you have also wondered about this too… was regarding my life expectancy. Obviously having five tumours in your brain is not ideal! While a specific time frame is hard for an oncologist to predict, the good news is that there is nothing that I need to imminently worry about. Others in similar situations have easily survived five, 10 or even 15 years… so my goal is at least 20!
Some additional updates are that my energy levels are coming back, I’m eating more, and I’m running more (to balance out the eating more!), and the oncologist thought that physically I looked great. I’m also returning to work and have been going into the office as much as I can. Seeing my colleagues in person brings me great joy 🙂
To recap the recent tests: the bone scan was good, the CT scan was good and the brain MRI was also good! I owe a lot of these good results to medical science, but I also owe some of this to the prayers and positive energy from all over the world, the power of crystals, angels, and acorns, and who can forget the incredible 1,000 paper cranes! Thank you all…and keep ’em coming!
Holy Chapel in Sedona: Mike S said a prayer and lit a candle for me here 🙂
If there is any certainty in life, it’s that life is unpredictable. I first said this to a friend back in December, in reference to both my health situation and a death in his family that occurred around the same time. Well, fast forward four months, and once again, I find myself saying these same words…but this time it’s in reference to a recent death in my own family. As many of you know, my father passed away suddenly on April 1st. This has been a huge and unexpected loss to our family, and we thank everyone for their love and support during our time of grief.
Truly, the last four months of my life could be used to write a country song… the cancer came back, two dear friends passed away in February, the guy I was dating ended the five month relationship…over text!… and then two weeks later my dad died….the only thing missing is that the dog didn’t leave me…probably only because I don’t have a dog!
But despite all of this, I’m back to feeling optimistic.
A lot of this is due to being able to spend time with family, friends and colleagues. All of these groups have been so supportive of me from the outset, and the last three weeks have only reinforced to me the incredible level of support that surrounds me.
Also, I had the opportunity recently to pop down to Texas for a couple of days to visit some dear friends. During the visit, we were able to catch a small concert at an historical venue, the Dosey Doe (doh-see-doh!), featuring an artist named Josh Grider. Josh has a particular song, “Bad Times Roll”, that has been inspirational for me over the last couple of months… it was amazing to hear him perform the song in person and to meet him after the show… I also discovered that food in Texas is HUGE!
The other reason for my optimism is that last week’s CT scan at Princess Margaret (essentially scanning me from neck to knees) came back with all “unremarkable” results. As my friend Angela mentioned earlier today, “unremarkable” is our new favourite word 🙂 So on the health front, I’m pretty happy at the moment (no tumours in my bones or organs!), and am looking forward to the first scan of my brain. This scan is scheduled for Monday and will assess the effectiveness of the radiation on those pesky tumours. I will then meet with the oncologist on May 4th to find out the results (May the fourth be with me!) So all is good with me, and I plan to keep being inspired by my new favourite country artist…
“Let the bad times roll, just let ’em all go…let the bad times roll off your shoulders…don’t look back…let the bad times roll…” ~Josh Grider
(If you like country music, check out Josh’s music on Spotify, Apple Music or Amazon Music!)
As you recall, radiation was finished at the end of January and I was expecting to see some side effects. I did experience some nausea the day after my last rad treatment, however the hangover remedy that I have carefully honed over the last 35 years, finally employed for a non-self-inflicted purpose, worked wonders to quickly remedy this particular side effect!
February was a recovery month for my body to heal from fatigue, which was pretty much the only side effect that I experienced on a longer term basis. Thankfully this was the only side effect that really affected me during the month, because everything else was a bit of a, well, for lack of a better term, a shit show 🙂 This was mainly due to several emergency dental appointments, a trip to emerge for an issue with my vision and then some emergency optometry appointments. Thankfully my vision has returned fully (the vision in one eye was partially blurred for about 10 days) and the tooth issue is on the mend.
Despite all of this, I have started running again once a week (not very far and not very fast!) and I try to get out for walks on the days that I don’t run. Also, this past Friday, I started my return to work transition. I believe this is a really good thing, as something I discovered is that being home all day, without anything to occupy my mind or anyone to talk to throughout the day, is not good for my mental health.
While the last six weeks have been a bit of a rollercoaster (and not the fun kind), there were still positive things that occurred. I received two special gifts, plus I was able to bring home the remaining cranes (recall the 1,000 paper cranes that the amazing Client Ops team made for me)… all of which will bring me some positive energy needed to keep up the battle over the coming months. I am keeping the acorn (thank you, Angela!) and the guardian angel (thank you, Auntie M!) with me at all times. The cranes are a little bulkier, so they will have to stay in my dining room 🙂
I also took the plunge of adding a new piece to my original Pink Ribbon tattoo. I decided to add the Grey Ribbon for brain cancer, along with my second date of diagnosis. To give you some perspective, the whole tattoo (located on my back) is about 1.5″ high and 2″ wide… so not really large as far as tattoos go… however, with me being squeamish, getting this little ribbon added did not come without some drama… halfway through the session, I, of course, became quite lightheaded and the team at the tattoo studio had to work pretty quickly to prevent me from completely passing out. After all the drama was over, I was able to convince the tattoo artist that I would be okay to finish up the tattoo… my angle was showing him an image of the injection that I’ve received in my stomach every month for the last five years… comparatively, my monthly injection is WAY worse than a tattoo needle… and in hindsight, I probably should have thought of that before we got started…
The other item of note recently is that a few days ago I had a full body bone scan completed (at the request of my oncologist from Princess Margaret)… this scan was looking for evidence of cancer in my bones…and I am incredibly happy to report that the scan came back as being “unremarkable”… which in this context is a GOOD thing!
I am officially 100% radiated… or as I like to think of it, fully zapped. To recap the week, I received my five planned Stereotactic Radiation Treatments (SRT). To give you an ideas of what this entails, receiving radiation treatments are pretty straightforward. Essentially I lie perfectly still on a platform to which my “goalie mask” is clipped, so that I am not able to move my body around while being radiated. While I get to lie down and be clipped into an immobile position, the machine itself has several large drums that move around me and shoot the cancer-killing rays into my head. This sounds like it’s painful, but there’s no pain or any form of sensation at all (other than the snuggish mask over my puffy face!)… it’s essentially like getting an x-ray… just with more intense rays.
Earlier in the week, I experienced very little in side effects, but with radiation, the impact of the treatments is cumulative, so I am starting to feel a few side effects now. However, everything so far is tolerable. I have a continuous low-grade headache (which I can treat with Tylenol) and I’m starting to feel some fatigue (which I can treat with naps!) From what the oncology team tells me, I will likely feel side effects for about a month post-treatment. This sounds like an ordeal, but if the degree of the side effects remains as it is today (fingers crossed!), then I will survive this… no problem!
My friendly neighbourhood radiation machine
The bigger news from this week is the after-treatment monitoring plan. The first post-treatment MRI will take place in three months, and this will look at how the five tumours are responding to the radiation (yeah…turns out there are five… not four… another guy snuck in there.) This time frame sounds long, but it is the appropriate amount of time as it turns out that it takes two to twelve months for the radiation treatments to take full effect. Given this, I will have an MRI at Credit Valley Hospital every three months for the first year, and then every six months for the following two years. Beyond this, I will also be having other scans done at Princess Margaret in the next month and beyond, so I am pretty comfortable with the level of oversight going forward.
But I have other good news from the week. First, I’m finally being weaned off the steroids, which is great for two reasons – one, I may soon be able to get my first decent night’s sleep since December 6th, and two, even with just the initial reduced dose, my face is starting to deflate! Good riddance to Puffy Face! The last fun news from the week is that because I successfully completed all five treatments, I was able to ring the bell at the cancer centre…so it’s good news all around! Thanks to everyone for all of your support thus far 🙂 ! I will be focusing on my rehab and recovery for the next little while, and then working towards resuming my regularly scheduled life… Onwards and Upwards!
The big week is finally here. My week of radiation treatments kicked off earlier this morning with the first of the five scheduled radiation treatments. Everything went smoothly this morning, and now I’m hanging out at home waiting to see if any side effects might kick in. I feel pretty good at the moment, and I’m thinking that it might be another day or two before anything materializes. Side effects from the radiation could be in the form of headaches or dizziness, but will likely present as fatigue or nausea.
And I’m okay with that… because to be honest, I can use a bit of a break from eating! I’ve been on steroids with pretty much zero exercise for almost seven weeks… plus the drug is causing some water retention alongside a brand new steroid-fueled appetite! While I generally don’t eat big portions, over the last month I’ve been using this newly found appetite to indulge in a more than a bit of comfort food (which I’ve been thoroughly enjoying!) However, between the excessive eating and the water retention in my face, I was a little concerned going in today that my radiation mask might be a little too snug… (full disclosure: it was definitely tighter than when it was made two weeks ago…!) …and here is some evidence of of why:
Yesterday was an incredible day. I was the recipient of two very special deliveries. The first was the arrival of Heidi, my “oldest” friend (in duration, not age!), who arrived from Houston. We are in our 35th year of friendship… a friendship that began in high school and has endured despite not always living in the same province, country or even continent! Heidi is here to Jane-sit for the last week of 24 hour surveillance, and then will be here with me to help me during Treatment Week as well.
The second special delivery was the arrival of 1,000 paper cranes… Jane’s Cranes.
You may be wondering where all of these cranes may have come from… well, the answer is Burgundy’s Client Ops Team: My, Alice, Sharon, Kathy and Derek 🙂 The genesis of this is a Japanese tale that the folding of 1,000 paper cranes provides a wish…
For those of you who don’t know the team, I will tell you a little bit about them. They are formidable and are a force to be reckoned with. I had the privilege of working with this team over the course of a several years at Burgundy, and they are so impressive and so passionate about what they do, which comes across every day. And most especially with this 1,000 paper crane project.
It seems that when the team heard my news, they decided that they wanted to obtain that wish so that they could help me with my fight. So they ordered origami paper and collectively… with help from their families as well… folded 1,000 paper cranes.
The love and support that I have received from the team is so incredible that it is almost overwhelming… having this team in my army, supporting me on the wings of a 1,000 paper cranes… means the world to me. And believe it or not, for the first time in my life, I may have possibly been at a loss for words… 🙂
The last week has been busy… well relatively speaking given my newly adopted OWL status (Oakville Woman of Leisure) 🙂 …
My MBA program resumed over the weekend, and I was able to attend all of the classes, under the close supervision of my awesome MBA teammates… who by the way, are way more strict than any of my other Jane-sitters! Despite the enhanced scrutiny, it was great to be out and about in society beyond my condo walls, and participating in a normal life activity. And I promise that I won’t over do it… if at any point the schoolwork becomes too much, I will pull the plug and postpone my classes until after treatments are done.
The other exciting news is that the pre-radiation appointments took place over the last couple of days as well. These are the appointments to essentially draw the map of the targeted radiation therapy that will be used to blast the rest of the tumours from my brain. The other part of this planning process is that the radiation team has essentially built me a custom goalie mask. This will be used also for applying the targeted treatments, as well as ensuring that my head doesn’t flop around while I’m being zapped.
This “zapping” is more technically known as Stereotactic Radiation Therapy (SRT). SRT is a specialized form of radiation treatment that utilizes a precisely focused beam of radiation to treat small, stereotactically defined, target lesions while minimizing irradiation of adjacent normal structures.
The other good news about this SRT treatment, is that while it is quite intensive, there are only five scheduled treatments… which is a far cry from the 30 treatments the last time I went through rads (which was post chemo and surgery, to boot). A few of you may recall that the last time, it was the rads that kicked my ass the most… so mentally preparing for five treatments is a lot less daunting this time around… But let’s hope that I don’t regret writing these words… However time will tell soon enough, as the treatments will be starting on January 23rd… it’s time to get this radiation show on the road!
I have been remiss in introducing the neurosurgeon… especially since he was kind of the main man in the first part of my adventure, so let’s meet him. Dr. Eric Marmor is a neurosurgeon with Trillium Health Partners, and I was lucky enough to be matched with him to perform the surgery to get rid of the four centimeter big boy. However. when I first met the surgeon, and noted his name in my phone, autocorrect of course kicked in and my phone recorded his name as DR MARMOT. Which is now stuck in my head. Oops.
As you may recall, December 13th was the big day and it was the doc’s time to shine. But before we got to that part of the day…
A few minutes after the locked bed incident, the door to the OR is propped open and I can see Doc Marmot in the hallway in conversation with another neurosurgeon. The two surgeons then enter the OR, and move their conversation over to a set of monitors that were showing a detailed graphic of a brain. The docs get deep into discussion here for a few minutes, and then two other members of the team drift over… ostensibly to glean important medical insights from the two neurosurgeons… who are discussing the following:
“Maybe we can go over?… or how about going around the back on this side?… or possibly even under…?”
This goes on for several minutes before one of them realizes that I’m totally paying attention to this conversation… and again, I just couldn’t help myself… I had to say it: “Oh I can totally hear you! and I’m going to assume that you are talking about someone else’s brain. I would hope at this point that you already have game plan for me, and you aren’t still discussing surgical options!”
The whole group turns to look at me… I’m in stitches… the looks on their faces were priceless… one of the docs confirmed that it was definitely not my brain under discussion… and then they scattered like ants… I felt a little bad for breaking up the party, but I was having such a laugh that it was totally worth it 🙂
So yes, brain surgery is terrifying. But being able to see the lighter side of life probably did more for me that day than knowing any other pertinent details about the procedure. This approach may not be the right one for everyone, but it got me through what has probably been the most traumatic day of my life. And I survived.
I’m pretty squeamish. I’ve mentioned this before. To give you an idea of how squeamish I am, while I tell people that I have watched all of Game of Thrones, the reality is that I “watched” a lot of it with my eyes squished shut and my hands or a blanket covering my face… you know… for protection…
Even just the concept of staples creeps me out. So a surgery with a distinct “ick” factor combined with having my head held together with staples after the fact did not really help to mitigate my inherent squeamishness.
Needless to say, in order to get through this period, I resorted to the full on Ostrich System… completely ignoring reality as if it didn’t even exist. And this worked! I survived the two plus weeks, and yesterday was the day that all of these creepy implements were removed… (I always knew the number was greater than 1…turns out the magic number was 30!)
By the way, for the staple removal, the hospital literally sent me home with a medical grade staple remover and said “Go see your family doctor”… and mine is on holidays!… but I am lucky to have a dear friend from my MBA class who is a nurse, and who graciously made a house call yesterday morning to help me out with this… so I am now footloose and staple-free! (Well, at least staple-free… footloose will come later… after three more weeks of bedrest…)
Keeping Up With Jane 