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!
July 19th, 2024 saw the wedding of my daughter, Kathleen, and my son-in-law, Matthew. It was an amazing day, filled with friends and family and joy and celebration. But, for me, July 18th, 2024 is the day that I have been waiting for and working towards for almost 19 years. That was the day that I had all four of my biological children in the same room with me all at the same time.
It is hard for me to articulate just how overwhelming and important that is for me. I’m not even sure how to begin to share how it is important to me. It has been such a long time in coming that I had, for a time, stopped believing it was ever going to come to pass.
But it did. Thinking about it continues to whelm me.
So I think, maybe, it is important to start at the beginning, with the moment I first recognized what it was going to mean for me to be a father.
Some time ago, during the last decade of the 20th century, my (now ex-) girlfriend was fully nine months pregnant. We were very young: me 18, her 19; of course, we didn’t really know how young we were at the time. Few of us really do at that age, and when you find yourself in the position of becoming a teen parent, it is very easy to ignore. It was early December. My ex was still in high school at the time, I had graduated earlier in the year, and we were living in an apartment in Vanier, a neighbourhood in the greater Ottawa area. I was working nights at Tim Hortons, back in the days when it was still primarily a coffee and donut place.
I had, through various trials and errors, discovered that I needed at least four uninterrupted hours of sleep during the day before going to work. If I was going to get less than that I found I was better to push through without sleep and catch up the next day. For various reasons, largely lost to my memory, I was on my third shift without sleep and starting to feel it. I had entered that weird, liminal place where everything was a little unreal and dreamlike. I received a call at work from my ex letting me know her water had broken, but her contractions were still fairly far apart so there was no rush to get to the hospital. Great, no problem – I could finish my shift and let my bosses know that I would not be able to work my next couple of shifts before heading home, which I did.
We finally headed to the hospital late that morning where we proceeded to spend the next 36 hours. I won’t take you through the blow-by-blow of her labour. I will simply say that it was long and hard and many things did not go right. As we approached that 36th hour, I found myself in the OR having my fingers nearly broken by my ex’s grip as my first child was pulled into this world with forceps.
This child was swaddled and placed in my arms. I looked down at this new life – blotchy, pale, still with a very pointy head – and my entire worldview changed.
There have been many artists and writers who have tried to describe that moment where everything changed. It is not an easy moment to describe: that movement from one understanding of reality to a completely new one. Some artists describe knowing that it was a moment of change; others talk about how they can only identify that moment in hindsight. Me, I knew.
I cannot overstate the impact of that moment. Nearly 31 years later I can still feel that moment in my memories. It was like cracking a glow stick – there is that tangible moment of the crack, and a small, instant glow where the two chemicals start to interact. But, unlike a glow stick, simply shaking me was not going to speed up the mixing of those chemicals. It’s not like I wasn’t already shook to my core!
There was an instant when I was just me, and my life was mine to live as I chose. Then there was a moment of extreme confusion. And then, as the dissonance and confusion washed over me and passed through me, I was left again, with me, but my life was no longer mine to live as I chose. I was a father, and this life in my arms was my responsibility. I took part in causing this life to be. Therefore, what I did in this world, how I affected this world, had consequences for this new life that I was responsible for.
Please keep in mind: I was nearly 5 days without any sleep at this point. I had no defenses against the psychological impact of this moment. Additionally, I was 18 years old. I had recently had a very abrupt break with my parents, and I was desperately trying to be an autonomous adult, so I had already come into this moment very vulnerable, even if I didn’t recognize it. And then, there was this life, this small person, who existed because of choices I had made.
And I was profoundly affected. I knew that something had changed, and I was acutely aware of what it was! I was a father, and I was never going to not be a father again. It meant, for me, at that moment, that I had to re-examine everything about how and why I was living my life.
I made my way home in a kind of hallucinogenic, foggy high. I had lunch with a friend where I must have appeared dangerously manic. I have vague recollections of trying to share this moment with my friend at the time, but I’m sure it was mostly incoherent. (More than thirty years later here I am still trying to find a clear way to explain it.)
So, having had a hugely impactful, personally transformative moment, and having stared into the face of my first child, I went home and passed out for a full 20 hours. As I slept, that glow-stick moment persisted, and the slow and steady transformation of my selfhood started to displace my previous self-image.
Growing up, I never had any dreams of being a parent, and I never imagined myself having children. I was an only child, with a strange and challenging relationship to my own parents, so the idea of being a parent never really established itself in my mind as something to think about, to imagine, or to aspire to. Further, I was very (very!) self-oriented, and disinclined to consider others except where the consequences impacted me. I had never really considered the idea of having children. As a result, I had no preconceived ideas of what kind of father I would be or wanted to be, nor how I would respond to children of my own.
As anyone who has raised children from newborn on can tell you, those first weeks and months are a crash-course in taking care of another life. My ex still had almost two months of school left before she graduated, and I was still working nights so while she was at school I was at home, sleep deprived already from work, and taking care of a newborn. Every day continued to reinforce for me that I was a father and I had a responsibility to make a world for this child of mine.
As the days and weeks became weeks and months, my identity as father became more established. Every choice I made now was made in this new context. I was not very good at the start. I continued to throw myself into overuse of alcohol and drugs, while still pushing myself to cook, clean, and engage in every aspect of raising a child that I could see at the time. It wasn’t a great combination, but, with the benefit of age, experience, and hindsight, I can look at that poor young father that was myself and understand how those choices were made, and what he (I) was trying to do.
A little more than two years later we had a second kid. This was a less dramatic moment for my identity, clearly, as I had already been a father for a while, but it was no less impactful. I was surprised to discover just how much joy I felt at meeting my second child. I didn’t remember joy the first time around – there were too many other feelings at that birth. But, having discovered how much I loved my first child, I was way more excited in the anticipation of meeting my second. And, even though this second child was colic-y, and I was much more adept at near constant drug and alcohol consumption, I found that my sense of being a father was increased in a way I was unprepared for. Yes, joy, but also a sense of failure at not being the father I could be, but also confusion because I didn’t yet know how to be that father.
I can recognize that I went into fatherhood with a very well developed sense of responsibility, and that sense was tied directly to ideas of freedom. Because of how I was raised, my worldview asserted that, as long as I could demonstrate that I met all of my responsibilities then no authority could deny me my freedom. The added ingredient of fatherhood made for a confusing and ever-present sense of danger: I had to take care of these new lives or I would lose my freedom, but being a parent truncates freedom by its very nature: my life was no longer exclusively my own, and the responsibilities of parenthood are continuous, and they change as the children grow. I found myself rapidly oscillating between desperately trying to do everything I was supposed to do for the kids and desperately exercising my freedom through alcohol and drugs. The contradictions were not sustainable.
And so it went for another couple of years – lots of drugs and lots of alcohol and lots of diapers and lots of formula and lots of learning how to cook for children and lots of working. All of those lots of helped me continue to deny my internal intuition that told me that I could be, and needed to be, a better father than I had been to that point.
Inevitably, there came a point when I could no longer deny to myself that I needed to make a change. When I looked hard at that idea, I came to understand that I had already been changing. Those changes were directly related to that glow-stick moment, but I had been living as if that moment was all there was. As my first born approached their 4th birthday, I approached a decision that I didn’t know how to explain, yet, but the decision itself was clear – I needed to leave the relationship with my kids’ mother if I was ever going to be the father I needed to be.
I did it poorly. That’s an understatement – I made an unnecessary mess of the whole thing.I don’t yet know how to do it well, but I can look back and declare that I could have done it better.
I left. I took a job in another city and I tried to make joint custody with my ex work. I consulted with a lawyer about seeking custody of my kids, but I was told, repeatedly, that as the father I was unlikely to win any custody battle (this was the mid-late 90’s.) After several months of difficult interactions around visitation with the kids, I came to the conclusion that my ongoing efforts to be a part of my kids’ lives at that time was headed in a very destructive direction and if one of us didn’t disengage then my ex and I were going to destroy each other leaving my kids with no functional parents. So, I made one of the hardest decisions of my life – I chose to disengage and let my ex take sole custody of our kids.
I cannot express how painful, heartbreaking, and soul-crushing that decision was. There was no consultation, no explanation that could make it better.
I was now that father who left his children. It left a scar on my soul that is still tender, made all the more painful and sensitive than other scars by the fact that it was a series of my own choices that led to that point. It didn’t matter that I was doing it to be a better father, or that I was learning to be a better person – no reason I could voice would mean anything to two children whose father was not there because he chose to leave.There were not enough tears to soothe that pain, and that pain has never fully subsided. I still ache at that decision. I am still filled with sorrow for all the years I was not there.
But, having made the decision, my resolve to interact with the world in such a way as to make it a better place for my kids was redoubled. And a new element had entered my life that supported and participated in that decision – my wife, Carol Anne.
Before we were married, Carol Anne and I had a lot of discussions about what we wanted our marriage to be. One of the points that I needed to reconsider was the idea of having more kids. Carol Anne wanted children. I already had children and, knowing what babies and toddlers were like from first hand experience, I was concerned that I may not have the energy for babies again (at the ripe old age of 24!) That is to say: I was hesitant. However, several things changed my mind. Well, really, one thing changed my mind on several fronts: Carol Anne.
First of all, Carol Anne made it clear to me that having kids was really important to her – that, in fact, there was no point in us pursuing marriage if kids were off the table. Additionally, and throughout our entire relationship, Carol Anne actively supported and encouraged my pursuits to be a father to my kids, even while I was absent from their lives. ensured that they were included in our wedding by mentioning our sadness at their absence and our hope that they would be with us before too long. Every place we moved, we talked about how we could arrange our living space in case one or both of the kids suddenly came into our lives. Even before Carol Anne and I had kids together, we were discussing my kids, the hopes and sadness, the dreams and fears, together.
It has only been very recently that I have discovered that my development as a father, my success (if I can call it that) in being the father that I am, is tied directly to my learning how to be a husband. In my previous relationship, I was so focused on being a father, I did not put effort of consideration into being a husband. With Carol Anne, our relationship was so different from any other I had experienced., and our commitment to each other was so automatic, that getting better at being her husband naturally entangled with being a father, which, of course, naturally led to us having our own children. I now understand that learning to be a husband, a partner, changed how I communicated, and how I thought about my choices and actions. I became better at recognizing and understanding how things that affected me also affected my partner. It changed how I thought and how I communicated. And it also made me better at being a father, because I had a better and deeper understanding of how everything that happens in a life also happens to everyone who is connected to that life. So as Carol Anne and I raised our kids together, I continued to work at being a better father.
Nowhere, at any time, did either of us lose sight of the desire to have Sam and Nathan included. Year after year, we marked all four birthdays together – Sam’s, Nathan’s, Kathleen’s, and Martin’s.
So, I was a father on two fronts: active and present with Kathleen and Martin, and absent but aware and mindful of Sam and Nathan.
In October of 2013 I had a migraine attack that never went away. It marked the beginning of a long, difficult period that, again, saw me absent from my kids’ lives. It wasn’t the complete absence that Sam and Nathan experienced. It was an intermittent and ever-changing absence. Some days I was completely gone, knocked out by migraine symptoms and isolated in my bed; sometimes I was around, but diminished. I missed recitals and concerts. I couldn’t engage with them in their activities. My presence or absence was unpredictable, and my ongoing pain and debilitation affected the day-to-day mood of the household. Further, the best of me tended to be spent at work, leaving only leftovers and second-bests for my wife and kids.
It has taken me a long time to recognize how decisions I was making were counter to my commitment to being a husband and father. I realize that I was trapped by the fallacy that the husband and father must be able to provide – which is to say: work – and I lost sight of a more important concept: that being a present and active father provides more to a child’s life than any amount of money.
I am jumping over a lot of important moments in the service of brevity and focus (he says nearly 3000 words in.) There have been so many moments over the decades of my fatherhood that marked important lessons, deepening of understanding, and complete transformations of perspective that all of my children have helped me learn. I don’t know how to share that, yet, without an entire book’s worth of words to trace and explain how each moment changed me as a father.
I can say that my children and my wife have made me a better father. I know that being a father has become a central understanding of who I am – I have been a father for 31 of my 49 years alive! I have known only 18 years without the responsibility of being a parent. And still, for too many of those years I was trying to be a parent to children who were not in my life. Or, perhaps just as importantly to understand, I spent too many years not being a part of their lives.
When my eldest child Sam reached out to establish a relationship with me (shortly after they left home,) my heart rejoiced. At the same time, I was scared about how I would be received. Nonetheless, it was a start, an opportunity to be an active and present part of another one of my child’s lives, and I did my best to seize the opportunity! I know that most of the credit for making this connection work goes to Sam. Their dedication to connecting to their siblings meant that any fumbling and shortcomings I may have presented could be bypassed in order for them to have a relationship with Kathleen and Martin. I could have done (and still could be doing) better; but having established the connection, we have not lost it. In the process, I learned that I tend to focus on the life right in front of me, and I need to make an effort to connect with loved ones who are at a physical distance.
Further, because of where they were in their life journey, Sam began their renewed relationship with me with a great deal of honesty and candor. I learned about the importance of their relationships to their siblings, about their evolving relationship to themselves, and about how they were choosing to live life as honestly and authentically as they could. This has had a profound influence on me as I navigate the relationships I have with all of my children. I, too, am learning how to share the deeper authentic parts of myself with my children, and there is no doubt that Sam set the example for me.
All of this is to say: the credit for sparking the long journey of reconnecting with my kids must go to Sam. They made me a parent; they also showed me the way through to reconnection. Their ongoing tenacity in pursuing the relationships, with uncompromising authenticity, has been a critical and essential part of my journey as well as their own.
And that tenacity has had far reaching consequences. Because of the reconnection between Sam and myself, Sam was also able to connect with Kathleen and Martin. These relationships continued to develop independently from me and I could see how meaningful and important that was for everyone involved. When Kathleen moved to Toronto, one of her goals was to spend more time with Sam. That, too, had extended consequences, because Kathleen was able, through her relationship with Sam, to spend time with Nathan and establish her own relationship there as well!
As I watched my kids establish and grow their relationships with each other, I came more acutely aware of my lack of connection to Nathan. As I fumbled around trying to find a gentle way to establish a connection, Sam helped me to understand that I needed to be the one to reach out to him. I could not rely on Nathan doing what Sam did in reaching out to me. Sam helped me to learn and understand that Sam’s way was not Nathan’s way. It was up to me to reach out and make the effort if there was to be any success in reconnecting.
And thank goodness I learned this! Just a short time ago (it could still be counted in months) I managed to connect with Nathan, my second born and the child I have had the least contact with over the years. Again, when the opportunity came to connect, and the request was made to connect in person, Carol Anne helped me recognize that the cost of travel was so much less important than being there. It didn’t matter that we couldn’t afford it financially, we couldn’t afford – emotionally, psychologically – to miss this moment. So, I flew to Nathan, had some hard, initial, conversations, and established a relationship with my son.
And then, all of a sudden, after nearly two decades, I was talking with all four of my kids! Yowza! It was a marvelous feeling! There was still so much to learn and do, of course. I needed to learn what meant to be a father to adult children I had no hand in raising. I am still learning, but I am confident that they are still learning what it means to have their father again for the first time.
And, of course, it also meant that my kids had all their siblings in their lives. I hadn’t understood how important that was, or how impactful it would be for all of them, until Kathleen’s wedding.
Because, all of sudden, we were all together! The four children I fathered, my wife who helped me to maintain faith, and me: we were together, present, and sharing an event! We were talking and sharing and laughing and celebrating the first of my kids (the siblings!) to get married! And it was happening with their father! I think that glowstick that cracked more than 30 years ago is glowing about as brightly as it ever has.
I’m still processing how it has affected me, and this piece is part of that processing. However, there are a few things I chewed on long enough to be able to share with some confidence.
Having all of my kids and their partners together helped me to understand that, despite the very different experiences my kids have had of me over their respective lives, I am, singularly, their father, collectively, even while I have personal relationships with each of them. Those personal relationships live and evolve and grow because of the relationship I have with that child, because of what I learn and how I learn to respond to the person. At the same time, I have learned that, as their father, I hold a shared place in their lives.
Kathleen and Martin shared with me their observation that they had never seen me so relaxed as I was when all four of them were here, together, in our home. I believe that is true. There are several stories of how I have lost my mind in panic whenever I thought I might have lost one of my kids. I am normally very good and reliable in a crisis – except, it turns out, if that crisis involves not being able to find one of my kids.
As I mentioned earlier, I didn’t grow up with a vision of myself as a father, so I have never tried to anticipate what kind of father I would be. That being said, I also had this idea that my job as a parent would be over when my kids entered adulthood. I was wrong. It turns out that parents still have a role to play in their children’s lives once they are adults.
I have also learned that I cannot make up for my past absences. What I can do is make the most of being present now, and that has its own value. Being a parent to adult children is different, and learning what they need from a father as adults is, like their childhood, an ongoing and ever-changing process. Some of the experiences are personal to each of them, and some are shared.
And it’s me! I’m their father! To all of them! And they all get to share in the same father to their adult lives.
It fills me with love and joy and excitement. It also, very occasionally, threatens to crush me with fear and worry and concern. Regardless, I am content to let it whelm, and to let that whelming remind me that this is now, this is real, and it is not just something I am hoping for.
However long it took, I am a father to all of my kids. Thank you, Sam, Nathan, Kathleen, and Martin, for letting me fulfill that role, however imperfectly. I love you all, collectively and individually. Whatever life throws at us all in the future, I will remain, to the end of my days and beyond, your father.
I love weddings! This is not a secret: I tend to mention it (a lot!) whenever the topic of weddings is brought up. That having been said, it should be noted that I never, ever want to have another wedding. Being married is wonderful; getting married is horrible.
This is reason enough to enjoy a wedding (one’s own notwithstanding): I deeply enjoy the extraordinary efforts that go into producing a wedding, no matter how small or large. I enjoy seeing how the alchemical results from the agonizing contradictions inherent in weddings – the stress, the angst, the torment of making decisions on details that, in most other situations, have negligible importance; but, in the context of a wedding, the importance of those details is magnified a hundredfold – all of this suffering to produce what is supposed to be one of the happiest days of a couples life. What comes out of this strange crucible is what makes a marriage, and getting to participate in the ceremony that launches that marriage – after all the suffering and planning is done – is one of the great joys of my life.
So, I collect weddings in my memory like little mental candies of happiness that I pull up for myself every once in a while. Someday I might write a little something about those memories and all of my favourite weddings over the years. But not today. Today, I want to talk about one specific wedding.
Last week my daughter and my (now) son-in-law got married. It was, even adjusting for my bias as father of the bride, one of the most beautiful and wonderful weddings I’ve been to. Easily in my top three! With over 600 phots of the three day event (not including the “official” photos, which I have not seen yet) it was an event well and truly celebrated!
Setting aside, for a moment, the months of planning and preparing by Kathleen and Matthew, the Wedding Events got underway on Thursday with the rehearsal and rehearsal dinner. The rehearsal included entrances, exits, transitions, and tears! It’s weird to think of a rehearsal as something to get emotional over, but the feelings were undeniably big! Pastor Grant walked us through the whole thing with charm and enthusiasm, keeping it all light and moving along at a brisk pace. By the time we were done, everyone was feeling comfortable and ready for the big show.
Then came the rehearsal dinner. So many more people and so many more feelings! If you’ve read the previous blog posts you are aware that the past couple of months have been unexpectedly challenging. As a family, we were in need of a good celebratory party, and the rehearsal dinner was a perfect overture to the main event.
Family and friends from both sides had been showing up for the past few days, and more arrived that evening to join us all at the dinner, with only a few unfortunate exceptions. Kathleen’s grandmother (Carol Anne’s mother) needed to spend some time in the hospital. So, Carol Anne’s sister and brother also spent time at the hospital.
Back at the rehearsal dinner, food and conversation were flowing with new friends and family arriving through the evening. The crowning moment for me came when my two oldest children and their partners arrived. That marked the first time I was in a room with all four of my children in 19 years. I experienced so much joy in that moment it was hard to process. Fortunately, I had a couple more days of the same to process and properly appreciate this juxtaposed event. In the spirit of full disclosure, I am still processing the entirety of the emotional and psychological impact this has had on me; stay tuned for a separate post on that!
Fast forward to the next morning – the morning of the big show!
Wedding day!
Yowza!
If you have had a child of your own get married you can let me know if any of this sounds familiar: For me, the Wedding Day Feelings were many , diverse, and omnipresent ,with each one getting at least one solo in the extended, improvised jam session. Joy, yes, and sadness, of course. Let’s not forget a whelming level of pride. There was, for me, also a strange sense of relief: relief that the day was finally here; relief that I was going to be able to manage migraine symptoms; relief that my wife and I were doing this together; relief that this marriage was good.
You know that good feeling? That feeling that, however it actually plays out, whatever it is, it will be good. That feeling persisted all day and into the night. Our whole extended, chosen family was around and present and enthusiastically helping out to make sure we all arrived at the church on time, well dressed, well fed, and in the moment.
The morning started off with the our youngest’s partner Zamira making breakfast for the whole household and bride’s side wedding party. What a spread! Throughout the morning, while people woke up and showed up, Zamira made sure everyone was well fed and well hydrated, and she still got herself ready on time, chauffeured people to the church, AND she still went on to sing during the ceremony. So much amazing work and support from her. (Hey Tropicana – maybe send some money her way and get her to promote your product?)
Our close friend Lorri came over before she was even awake to do hair for the Bride and Bridesmaid (Martin) and then dashed away to get herself ready for the ceremony. Diane and Jim arranged for our rides. Anika was at the ready to help with all the clothes. Drin took charge of Kathleen’s phone and documented our morning. I learned what a circle selfie is.
Meanwhile, over at the groom’s morning, there appeared to be much laughter and merriment (I wasn’t there. I’m just making guesses on the photos I’ve seen.)
Pastor Grant officiated a wonderful, moving, and heartfelt ceremony that clearly reflected the couple. Each moment seemed to carry a little bit of magic, and all those bits of magic cast the spell that carried Kathleen and Matthew through the transition from two separate people into a single partnership embodied in two people. I cried, a lot. My wife cried. The Bride and Groom cried. (I’m pretty sure both of Matthew’s parents cried, but I wasn’t looking at them, so I can’t say for sure.) It was amazing. It was wonderful. It was beautiful. I don’t want to take you through a moment-to-moment description because it won’t do it justice. There is a recording of the ceremony and, if I am able, I’ll link it here for you to enjoy if you want. I recommend it. It is very moving.
I’d like to take a moment, as we move from the church to the reception, to mention our family friend Julianna Tomaselli. Julianna’s involvement in the execution of this wedding was instrumental – not only for all the help and advice she provided, but also for the confidence and calmness she brought to the planning and preparation. When Carol Anne was in the hospital and Kathleen realized she needed to change strategies to get everything done, Jullianna was there to help them out.
I also want to stop and mention the amazing mother-of-the-groom, Julia. Julia was the other person my daughter turned to and received immense support from while her parents were otherwise distracted. Kathleen expressed much appreciation for her relationship with her (now) mother-in-law. Besides being thrilled that my daughter has married into such a warm and welcoming family, I am overwhelmed with gratitude for well Julia and Kathleen fit into each other’s lives. Julia’s participation in the execution of this wedding cannot be overstated. I won’t get into an exhaustive list, but notice all the flower arrangements in the photos? Julia grew and arranged those.
Which brings us to the reception! Wowwee Zowwee! What a good reception! First off, take a look at these table centers:
The flowers, as I mentioned are by Julia. The rest – the log cutouts, the number plates, the vases, all of that – was designed and made by Kathleen for every table. This is the kind of effort, energy, and attention to detail that permeated the entire 3-day wedding event.
The event was held at the Esquimalt Gorge Park & Pavilion. What a beautiful venue! Overlooking the Gorge with floor-to-ceiling windows, it was the perfect backdrop for a great few hours of food and conversation and celebration of the newlyweds. Again, Julianna’s touch was on display in the setup and flow of the event. The tables were all fun and interesting groups. It was heartening to see that the communal energy shared by Dawsons and Sargents at the rehearsal dinner was not a fluke! The mix of families and friends was a lot of fun. Connecting with our new extended family and friends while reconnecting with family and friends we hadn’t seen in a while all lent itself to a jovial and celebratory feeling that carried itself right through the official photos and into the sanctioned after-party that we held at our house.
There were, of course the regular speeches that are given at this sort of event. I’ve included links to the recordings of those speeches as they were all lovely (even mine!) and I think they reflect both the spirit of the wedding and the depth of emotion that the wedding invoked in the community. The quality is what you might expect from phone recordings, but they are worth it!
Recording 1 – Father of Bride
Recording 2 – Father (and Mother) of the Groom
Recording 3 – Maid of Honour
Recording 4 – Best Man
The after-party was a loose and casual affair that Carol Anne and I decided we want to host for anyone who wasn’t quite done celebrating. We took a short break between the reception and the party for people to change and nap if they chose. We had no real plans beyond having drinks and food and chairs, and it turns out that was all anyone wanted. With chairs set up on the lawn in the late afternoon and evening, people from both bride’s and groom’s side gathered to chat and share time. We talked, we laughed, we all got to spend a little more time with each other while the bride and groom got to spend time with just each other. The evening ended in a slow fade as everyone took their own time to call it a night. It was all an easy slow fade knowing that we would see almost everyone again the next morning at brunch.
Saturday morning dawned sunny and hot – the perfect weather for an outdoor send-off brunch! Many of the previous days’ and nights’ events were again in attendance. Saturday morning also saw the return of the grandmother of bride! My mother-in-law returned from the Saanich Peninsula hospital in time to enjoy some of the bruch and company. People came and went, ate heartily, and generally were able to enjoy time with the newlyweds and each other without any time pressure while gifts were opened and appreciated by Kathleen and Matthew.
As the morning became the afternoon, the guests all chose their own time to make their exits. The numbers slowly dwindled, but the conversations and visiting continued until we were left with just ourselves and immediate family. With planes and ferries to catch, our world cross-faded from wedding back into the rest of our regular lives.
So, what with one thing and another, here we are! Our house is much quieter. After a week of guests and visiting, the absence of crowds, along with the departure of Kathleen, has left our house feeling very empty. We are left with a few leftover belongings and a couple of cats to be collected after the honeymoon. Otherwise, we are adjusting to the new normal of having a child firmly launched into a life independent of us.
The next few months promise to be busy and interesting in their own right, starting with the acquisition of two new kittens! But that is all for future posts.
For now, I am reflecting on all the changes that this wedding marked for me personally and for our family as a whole. I expect that many of these reflections will come out in some of those future posts, but for now, I leave you with this:
Regardless of the statistics or the pessimism or the cultural criticism that tells us that getting married is an outdated institution, I still believe deeply in marriage and the magical transformative power that a marriage has on its members. I have experienced this myself with my wife and our marriage. I believe I am seeing it in Kathleen and Matthew. And I am so excited to see what other magic their marriage will produce, not only for themselves, but for all of us in their extended family and community.
A quick postscript! Below are the links for the local businesses that were used. I have received no compensation for promoting these businesses; I just think local businesses are important.
It’s been a week since I woke up in the hospital and received the news that the surgery had been so successful within minutes. My recovery started to be equally amazing. I read the above and realize you all had a very different experience than I did. From my perspective. I had so lost a piece of myself and lost all the words to be able to describe how that was – that was the tumour – at the same time there was the cyst which was filled with fluid and was pushing my brain around, causing me to lose balance, lose muscle control, lose facial control control, and lose bladder control. So, waking up after the surgery almost immediately with the pressure from the cyst released, I felt stable again. My muscles did what I asked them to, and I very quickly regained physical strength.
Underneath that I found a piece of my brain that I’ve lost for a while, and I didn’t realize what part of me had disappeared until it started to come back. One of the things, perhaps the most notable to me, was lying recovering in a neuroscience floor where absolutely everyone around me had just had brain surgery. My brain eavesdropped and listened and learned, and it’s been a while since since I’ve chosen to learn and derive such pleasure from it.
The other really important thing to mention is that the healthcare system did not fail me when I needed it. It was there, and I was served, and I have been healed. The failure is more in our communities and the relationships that we no longer make time. My new doctor had seen me in person a couple of times, but until Morgan came in stamping his feet, he confessed that he didn’t know who I was so he couldn’t see a difference. So it’s less about Drs and access to Drs and more about building those health relationships where people learn you, know you, and care enough to pursue the next steps. It is more about the delivery of health care, than even the access to it. the reports are there, the caring delivery concepts – its time to not just add more stressed doctors, but to rebuild and make the systemic changes that allows caring back into such a caring profession.
So many blessings have come from this experience. I feel myself again – better than I have in over a year! As many of you know, we have an open household and a large family and all the work that we spend building relationships just came back to us in spades when we really needed it. All of you were much more afraid than I was. I kept hearing of our wonderful friends who stepped up and were there for my kids and my family
A lot of the anger that I have about the situation comes from what we normalized. About 10 years ago I remember going to the doctor being exhausted and I was told “you are a working mother of course you’re exhausted. The workplace is full of stress. You’re also looking after your children, how could you be anything but exhausted.” Was I having headaches? Sure. Did I identify them as being such? No. In hindsight, we’re seeing all of the justifications. I normalizied symptoms that I shouldn’t have been normalizing: the headaches were caused by not enough caffeine; the vomiting happened because I carry my stress in my gut; and so on. The only truly distinct thing that I could say over and over and over again is that “I’m just not myself.” But as a 50-year-old woman, it was so easy to Normalize that as menopause and depression and burn out.
Thank you all for following along this journey with us, not just in these postings, but actually walking beside us. We are also very very grateful. There is a myriad of things that could have gone really wrong in the middle times – I recognize not only my rediscovering my language – I can find the regular words – but my 25 cent words have come back too!
It could’ve turned out completely differently and all I can say is, for the moment, I’m alive. I am feeling well and we are really working hard at the moment to be in the moment and celebrate the moment where we are finding ourselves for now.
We are at the beginning of a journey and we will keep you posted as new information evolves. I will be going on Long term disability and Morgan and I are going to take some time, and enjoy some time to make space for everything that happened.
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.
