July 2, 2024
Greetings to all our Friends and Family,
Some of this will be news for some of you, and some of this will be repeat information for some others. Thank you all in advance for taking the time to read.
On Monday, June 24th, 2024, a sizable brain tumor was discovered in Carol Anne’s frontal lobe. It was removed on Thursday, June 27th. I thought I would try to share the basics of the story of how we got here with all of you. I know there are some of you in our lives that have not heard all the news yet, so we wanted to share the story with everyone on social media. This way we can continue to share with everyone what we can expect over the next weeks and months of Carol Anne’s recovery as we discover it ourselves.
For the past 6 to 8 months, Carol Anne has been complaining about not feeling like herself, although that feeling has been creeping up on her for much longer than that. As we take the time to reflect on the impact this unknown tumor has been having on Carol Anne, we are becoming aware that she has probably been affected for at least 18 months, if not longer.
We started to become aware that something unusual was happening to Carol Anne at least 8 weeks ago, but it was hard to identify exactly what. Historically, Carol Anne has struggled with mental health issues around depression. Indeed, this has been a primary diagnosis for her for more than 10 years. As a result, both Carol Anne and I were attributing her recent struggles with her confidence, her mood, and her choices to her mental health struggles
As a number of these symptoms increased in severity, her behaviour was increasingly uncharacteristic. Because this had been relatively gradual, we were still working on the assumption that this was mental health related, combined with the effects of perimenopause/menopause. Carol Anne worked diligently to try to connect with doctors and health professionals to get some sort of diagnosis and assistance, but the state of health care in BC is in bad shape, and family doctors are few and far between, so Carol Anne continued to make her best guesses and treat herself with random Telus Health doctors. She started taking time off work to focus on her health, but everything seemed to be getting worse.
Right around my birthday, May 23rd, things started to get worse, faster. She started losing time – she would forget what time it was; she would lose herself in her phone or tablet playing the same game over and over; she would go on online shopping sprees without thinking through what she was buying. She started losing situational awareness, and we started to have to watch her carefully when we were out. Her texting became increasingly erratic. Her attempts to solve problems (her greatest strength) became incomplete, ill-timed, and poorly communicated, if at all. Additionally, she started falling frequently, and when she fell, she could not figure out how to move her body to right herself. She had a harder and harder time both getting her body to respond and responding to her body. [Included in this have been problems of bladder control.] She, of course, was still thinking all of this was her own fault and that she needed to be doing something to get better – better diet, more exercise, etc.
Without going into all the specific details, she was less and less herself, and her choices were increasingly suspect. Through all of this we still did not have any clear medical help except for the specific help Carol Anne could ask for from naturopaths and clinic doctors. That help, though, was based on her previous diagnosis of depression and our own incomplete self-diagnosis, not on a medical diagnosis, so they were really only providing what she was asking for.
In the end, in desperation, we turned to private health care and paid much money to join a private practice. {A brief aside – Fortunately, this was not a “pay for a doctor visit” kind of practice, but rather a practice committed to providing a team of health care support that is interested as much in preventative medical care as they are with responding to acute medical symptoms. We cannot emphasize enough how happy we are with the Beta Team-Based Healthcare group. We would not have ended up with the care we received, and will be receiving, if Carol Anne had not found them. Setting aside the very Canadian cultural aversion to paying for personal health care out of pocket, we would like to encourage everyone to support this kind of health care.]
On Monday, June 24th, after a weekend with lots of falls, physical accidents, too much lost time, too much loss of communication from Carol Anne, and some very questionable choices, I took Carol Anne in to see the doctor with me describing my observations. After a couple of very brief tests, the doctor strongly recommended we go to the hospital and get a CT scan right away. Additionally, he insisted strongly that we go to the Victoria General Hospital, as that’s where the neuroscience team is based. We proceeded to do this.
[Another brief aside – We cannot say enough good things about all of the staff, doctors, and nurses who work at the Victoria General Hospital. The level of care, compassion, and dedication we received over the 6 days in hospital was amazing. Understanding that this care was delivered in spite of being under-funded, under-resourced, and over-worked makes the care even more impressive and us all the more grateful to have received it.]
We were seen without too much delay, fortunately, and the immediate results of CT scan initiated a series of health related actions that saw Carol Anne admitted to the hospital through the ER. The ER doctor, sometime in the middle of the 3rd period of game 7, while we were parked in the ER hallway, explained to us that they spotted a very large tumor sitting on the executive function part of her brain, and it was large enough to also be affecting her motor control functions on both sides of her body. An MRI was scheduled to more exactly identify the extent of the tumor and to check to see if it is a primary tumor or if there was yet more to worry about. (Turns out it is the primary tumor – they have found nothing else at this point.)
So then, starting that Monday, she was placed under acute observation on the neuroscience floor while we waited for her surgery slot. Carol Anne was in a low-stimulation ward, and her symptoms had progressed quite far by that point, so she had to wait without any electronic devices. This was not her favourite way to wait – she tried every tactic her tumor-clouded self could think of to get someone to bring her home. Fortunately, we all wanted her to stay in line for surgery more that we we wanted her home.
Thursday, June 27th was, finally, surgery day. After a bit of worry through the day because Carol Anne was accidentally fed breakfast that morning, she was wheeled away to the OR Thursday afternoon. After several hours of (necessary) silence, I received a call from the surgeon.
(Another aside – I would like to encourage all doctors to mentally prepare the first sentence to waiting family members so that there is no pause between greeting and the first sentence. I cannot begin to express how many thoughts passed through my head in the 1.5 seconds between “Hello, Morgan? Dr. Fleetwood here.” and “The surgery went very well!” I lost years of my life in that 1.5 seconds)
The surgeon was thrilled with how the surgery went. I could hear it in his voice on the phone, and Carol Anne says he was bouncing in the recovery area as he was talking. I think the appropriate word here would be “chuffed.”
They got everything that they could see! It went quickly and easily, with a minimum of bleeding, so she didn’t need a transfusion. However, he emphasized that, of course, they cannot see the microscopic stuff. Further to that, he was very optimistic that, having drained the fluid around the cyst, a lot of her really extreme symptoms would start to clear up pretty quickly, and he’s very optimistic about her recovery on that front. He said nothing went strange in the surgery. He was so very very happy with the way the whole thing went.
Carol Anne had a follow up MRI scan Friday morning, in order to confirm that they have, in fact, gotten everything that they can get. As of Tuesday, July 2, we have not yet seen the results.
Since the surgery, Caroline has been feeling much better and increasingly herself again. The first two days after the surgery saw a great and dramatic improvement in Carol Anne. Her motor functions have become much more in control, she’s much more aware of the difference between how she is now and how she was before the surgery, and she is continuing to discover the extent of how badly she had been affected by this tumor.. Her mood is improving, although she is going through bouts of anger, understandably, about how long it took to get treatment given how quickly she started improving since the surgery.
We haven’t seen the surgeon since the morning after the surgery, but we have appointments that are already being set up for the next couple of weeks to follow up with many doctors, occupational therapists, physiotherapists, nutritionists, and all sorts of other specialists yet to be named. She was discharged on Sunday, and she is now home and learning how to recover from the comfort of home. She is seeing visitors! If you’d like to see Carol Anne, please send us a text and we’ll be happy to see you.
I know there are probably many questions that aren’t being answered by this post, but that is either because we don’t yet have the answers or because we’re not yet ready to share.
There is much physical and mental recuperation that all of us need to go through over the next weeks and months, but we are grateful that this is the challenge we have to face now rather than something else.
We will try to post periodic updates once we’ve settled into routines at home and we have more news to share. This experience has reinforced for us just how much attention and reform needs to be dedicated to the fundamental support systems of our society (health, education, shelter, and food security.) Whatever our future holds, advocating for an integrated vision of change will be a big part of it.
In the meantime, we are turning our attention to Kathleen’s and Matthew’s wedding and upcoming move! We, all of us, are looking forward to seeing friends and family and sharing in celebration after this incredibly challenging period.
With love and appreciation,
Carol Anne and Morgan
