As a designer I LOVE a good before and after makeover. Before I went in for surgery to remove a brain tumour named Timmy, I joked about my brain being closed for renovations. On March 18, 2015 two years ago today I was diagnosed with a brain tumour standing in the hallway of emergency in my jammies. It was the worst day of my life (hopefully for ever).
Today two years later I am fully recovered from my renovations and I must say that my neurosurgeon did an amazing job. He really knows how to use that skull saw, and drill! Because I wanted all of the gory details, I ordered my surgery report and read it with a much needed bottle of wine. Aside from the metal plate holding my brain in, and the three inch scar running down the back of my head I am as good as new.
Timmy took up residence in my cerebellum the part of the brain which coordinates movement. On my one year surgery anniversary I tested my cerebellum with a paddle board yoga class, and although I took a dip in the Welland canal my balance has never been better. I still can’t dance but I’m pretty sure my lack of dance ability is a genetic defect and not brain tumour related.
What I have learned from having a brain tumour, and now being a brain tumour survivor has changed me forever. For the better I think 😉 Plus I have one hell of a scar.
No makeover is complete without pictures, so here is my brain with a brain tumour and 3 months after surgery.
Historically October has been a big month for my husband and I. We met 10 years ago in October, 9 years ago in October I moved across the country to live with him, and 6 years ago we got married not once but twice in October. October is our month. We got married legally in Victoria on 10/10/10, which is a very convenient date to remember. We then got married in Mexico on October 28 surrounded by friends and family.
I have become a celebrator, I celebrate everything post brain tumour. But a wedding anniversary that is a super big deal. Being married is hard, which is why I think that there is so much divorce. It’s hard to stick through the “for better, for worse”times and still love each other. We have had our challenges but we are still making the choice to show up and that deserves a celebration!
Packing up this piece today, to send it to the “Inner Workings” art show at The Gerry & Nancy Pencer Brain Tumor Centre in the Princess Margaret in Toronto. Last year I participated in the “Brain Cancer Got Me Thinking” art show in Vancouver with this quilling piece which kept me busy during recovery from brain surgery.
On March 18, 2015, I was diagnosed with a brain tumour while standing in the hallway of the emergency department. It was an emotional journey while I battled with what it meant to have a brain tumour and the decisions that I had to make as a result. On August 7th, 2015, I had surgery to remove the tumour.
Learning that you have a brain tumour is a dark experience. Having a brain tumour is not something that we patients do alone, we need life guards and beacons of light in the storm. One of the people that brought me light was my neurosurgeon. He was patient, kind and gave me hope. I also see him as a life guard who protected me through surgery. I dedicate this photo to him, and as I no longer need his services there is no longer a life guard on duty.
“A Light in the Storm” is my entry to the “Inner Workings” show.
On August 7th 2015 I went into the hospital to have a meningioma tumour removed from my brain. The experience was no picnic, but I survived and a year later I am thriving. I blogged all about my brainy experiences pre and post surgery, and if you are interested in the gory details they are all there in the BRAIN TUMOUR tab at the top of every page.
I celebrated the one-year anniversary of having my skull cut open and Timmy the tumour extracted, on August 7th, 2016. It was a monumental occasion for me and one that I am thrilled to be able to celebrate. Timmy the tumour lived in the cerebellum region of my brain which is the part of the brain that coordinates muscular activity. Pre-surgery I had some issues with dizziness, headaches and was advised to limit my activities to those that would not increase my blood pressure. I also had to keep my wine intake to a minimum as my balance wasn’t exactly ideal.
After the first disastrous camping trip three years ago, I didn’t have it in me to try for a second time. When my husband decided to give it another go I wimped out and took our not quite 2-year-old home to sleep at night. Last year I used the “I have a brain tumour” excuse (which got me out of just about everything that I didn’t want to do) and we didn’t go. This year I took one for the family, pulled up my big girl panties and went camping.
Thank you to all of the people that donated to our walk for the Brain Tumour Foundation. My husband, son who requested donations in lieu of gifts for his 7th birthday and I raised a combined total of $2,395. We walked/ran the 5K route around the University of Victoria yesterday. I ran it with my 7-year-old trainer, while my husband walked with our 3 year old. It was an emotional day as I remembered where I was last year for the walk. Last year I had been recently diagnosed and was in the process of learning about treatment. I could not run because it caused a great amount of pain in my head. However, this year I proudly wore the blue survivor shirt and ran most of the 5K with my seven year old.
On March 18th of last year I was diagnosed with a brain tumour and it was life changing. I believe that no one should hear the words “you have a brain tumour”, but it will probably continue to happen. Which is why it is so important for me to support organizations like the Brain Tumour Foundation of Canada that help those of us unfortunate enough to have heard those words.
This is why I’m fundraising for Brain Tumour Foundation of Canada. Patients and families need information, support and education. We also need more research. There are too few treatments for this disease and survival needs to be improved. Continue reading →
I know that I have readers all over the world, and for those of you still digging yourselves out of the snow you might be surprised that my son asked for snow for his birthday. It has been 2 years since he has been able to play in the snow. I have fond memories of playing in the snow when I was a kid, and so I do understand his request. When asked if he wanted to go skiing or have a birthday party he opted to go skiing, which really impressed upon me how important this was to him.
So we rented a ski condo from a friend, packed up our (newly purchased/borrowed/knitted) snow gear and set out for the mountain. In an effort to make the most of our weekend I booked lessons for the kids and my husband who had never skied or snowboarded before.
I learned to ski when I was a kid and skied through highschool as part of the ski club but it has been 16 years at best guess since I have skied. To be truthful I was a little nervous that I wouldn’t remember how, or that I wouldn’t be much good. That whole brain tumour, metal plate in my head thing has made be overly cautious. I was also nervous about the movement and potentially getting dizzy. I am 100% OK when I am walking but I have had some movement issues post surgery. But I am so happy to report that I skied (wearing a helmet) for two days. My body was sore but my heart was full. I am happy to have been able to do something that I really enjoy.
The birthday boy unfortunately had a different experience. Five minutes into his ski lesson my husband took the call to pick my son up because he had been sick. They both missed their lessons, and the birthday boy spent the next two days in bed with the flu. I felt awful for him. He did get on skies briefly, threw some snowballs and went for a sled ride but he missed out.
My youngest however has proven to be a true snow bunny. My husband was able to reschedule his snowboarding lesson and would do it again, and I conquered a small fear, so all in all the trip was a success. We will be back at it next year, hopefully earlier in the season!
In true Making a Life fashion I knit the kids matching multi-colour hats and for myself a white/orange winter hats for the occasion.
Every once in a while it’s important to take a break. A break from things you love (like writing this blog) and things that you don’t. Recently I went on vacation and took a break from many things including parenting. My husband and I went away for a few days together because it’s important for our marriage. I love my kids but I love my husband too, and sometimes we need to be together without the kids. Thankfully my parents are happy to step in and have let us escape more than once.
We contemplated going on a cruise but I have in the past struggled with motion, and given that my brain is still healing we opted for a land based adventure. I may have been fine on a cruise but when someone was meddling around in the part of my brain that controls balance I am going to air on the side of caution for the next 6 months or so.
Our land based adventure involved a fair amount of driving, which for me means a fair amount of knitting. I knit a pair of socks while we were cruising around south Florida. We went to the Florida Keys and Miami. We had a few very relaxing kid free days with lots of time to chat (if you know my husband you understand the humour). Anyway it gave us time to reconnect which is critical to the success of our marriage.
We started just south of Tampa and drove to Homestead where we stayed in a dive (which was a bit of an accident), but we survived the night. We also took the opportunity to hit up Red Lobster. It has been years since I have been to Red Lobster (we don’t have one where we live), and those cheese buns are fantastic.
In the AM we made a quick escape to the Keys and drove all the way to Key West where we spent the day, and evening. We didn’t stay in Key West because it’s pricey, instead we opted to stay in Marathon (another of the keys). In the morning after a trip to IHOP (how can you resist) we drove to Miami Beach. Our hotel was perfectly positioned right on the beach. We walked the beach for hours while I took too many photos. We had dinner on the strip and I drank the biggest margarita I have ever seen, twice.
We spent the following day relaxing poolside before the drive back along alligator alley to life with kids. The kids had an amazing time with their grandparents (pictures below prove it), and we had a great time without them. It’s important for them to spend a little time without us, and for us to spend time without them, we all appreciate each other more after a little time apart.
A year ago today, on March 18, 2015 I was diagnosed with a brain tumour. It was a very dark day. The ER doc softened the blow as best as he could but I was still in shock standing in the hallway of the emergency department. I remember walking out of the ER in a daze to wait for my husband who was organizing childcare for the kids. When he arrived I told him I had a brain tumour and he didn’t believe me. He tried to tell me that I didn’t, and I showed him the paper in my hand that said I did.
That was a year ago, and a lot has happened since. There were a dark few days but I was motivated my by children to get my crap together and get out of bed, which is where I would have stayed if I had my way. A craniotomy to remove the tumour was performed in August of 2015. The entire process was terrifying and painful. Six months later I have some very minimal side effects but nothing that stops me from living a full life. Case in point, this past weekend I went skiing (my tumour was in the part of my brain that controls balance).
Last night I read John Grisham’s “The Tumor: A Non-Legal Thriller” and bawled through the whole thing. If you are interested it’s available for free from Amazon. Thankfully I was reading it this year and not last year because that would have been a disaster. Can you imagine reading a graphic novel about brain surgery the day before you are diagnosed with a brain tumour? Talk about bad timing. If you are going for brain surgery soon do not read this book until you have recovered. After reading Grisham’s thriller I am once again reminded how lucky I was, because it could have been so much worse. SO MUCH WORSE.
Along with the pain and fear of the last year I learned some very valuable lessons. In keeping with my need to make, I fashioned myself this bracelet just in case I forget that I am a survivor. Although I am still reminded every time I look at myself in the mirror, and the area of hair that was shaved for surgery is about 3 inches long and sticking straight out. I have started a brain tumour hair trend, I hope it never catches on, I don’t mind being the only one with crazy hair.
It’s fair to say that this was the hardest year of my life to date, but as the saying goes “what doesn’t kill you makes you stronger.” It didn’t kill me. I am stronger, but it’s probably just the titanium plate in my head 😉