I have been waiting for the results of the MRI I had on December 8th for a month now. I called before Christmas to see what the Dr had to say and learned that he hadn’t looked at my scan yet. So Christmas and New Years came and went and I am still waiting. I would like to think that no news is good news but I am not too sure.
I think that I might be turning into a hypochondriac though. When my head pain turned out to be a brain tumour it’s hard not to think that every cold and flu is indicative of something much larger. I am on my third round of sickness in the last month. Even though my kids and husband have been sick about the same time with the same symptoms I of course think that it’s worse than it is. That’s when the anxiety kicks in.
I spent most of the day in bed yesterday. I was very dizzy and nauseous and by the end of the day I was so sore that it brought back memories of the days post surgery when it felt like an elephant was sitting on my chest. Those first few days were rough my joints were sore from lack of movement and being clamped to the operating table for 5 hours even with all of the pain meds. It all came flooding back yesterday and it was scary.
Every once and a while I will feel something in my head around my scar which the Dr says is normal but it still freaks me out. The dizziness and nausea with the most recent bout of the flu was reminiscent of my pre-surgery brain tumour symptoms. I was not excited to feel that way again. I’m sure that this too will pass but until then I will play the role of a hypochondriac.
I have been celebrating a New Year and a new start daily since I had surgery to remove a brain tumour. But with the coming of the new year I still made a resolution.
When I was a kid my house was filled with music. No one actually had any musical talent, so it wasn’t filled with piano melodies or anything like that. More like constant classic rock blasting out of the speakers all day and night. My dad would turn on the stereo when he got up in the morning, and it stayed on until he went to bed each night. It didn’t matter if anyone was home to listen to the music, it played on.
He had an extensive record collection which was replaced with tapes and then CD’s and now his Ipod. He is musically obsessed to the extent that when he comes to visit me he brings his own speaker so that he can listen to music at my house.
Just after I was diagnosed with a brain tumour I couldn’t listen to music. I was interpreting every song as sad, and it was depressing. I asked my brother who inherited my fathers musical appreciation to make me CD’s of happy music, and my husband obliged as well with a happy playlist.
At some point when CD’s stopped being the method of listening and collecting music I stopped filling my house with music. When we first had kids the CD player got broken (that button that made the CD tray go in and out was so tempting to little fingers) and that was it, music died in our house. It has been my wish to get our house wired with speakers in every room so that when you move from room to room the music is already there waiting to welcome you to the next space. That has yet to happen, but the next best thing did.
For Christmas this year my husband bought me a pair of wireless speakers which we can add to over time. My resolution this New Year is to listen to music every day intentionally because it calms me and makes me happy. Whatever your New Years resolutions are I hope that they also make you happy.
It’s been 4 months since I had a craniotomy and it’s time to have a peek inside my brain. I feel like this is the moment of truth. Although my neurosurgeon claims that he got every last bit of Timmy the tumour, I still have a little fear that he missed a piece. When he told me about the surgery and how he had to slice and dice the tumour to get it out of the hole they drilled in my skull, I worry that maybe one of those little bits went rogue and is floating around in my head just waiting to create havoc.
Today I am going for a tube ride also known as an MRI to see the inner workings of my brain. The MRI creates images with magnets so of course another small worry of mine is what if the metal plate or the screws that are affixed to my skull aren’t titanium. What if by accident they used steel and that sucker is going to get ripped out of my head. I told my husband who is an aerospace engineer and he said that it’s not possible to pull screws out of bone with a magnet, but he builds planes so the jury is still out on that one. Maybe I will get an earth magnet and try see if it sticks to my head.
The last time I had an MRI I was nervous about the process and having my head clamped in the helmet device. It was a piece of cake except for the pain I felt in my tooth with the metal post and cap. Today I am hoping for no pain, no tumour and some good music!
Woo hoo, I made it to level 38. For the past number of years I didn’t celebrate my birthday. I was aging and apparently that was a problem. Since my run in with Timmy the brain tumour I am overjoyed to be a little older than I was yesterday. So today and everyday I am celebrating life.
On the aging front the little old lady that lives in my hairline will still be having her 6 week visit with my hair dresser. Even though I maybe 38 I don’t want the flowing grey locks of someone twice my age.
Last year after I blew out my candles my oldest said “I know what your wish was.” He told me that he though I wished that my husband and I didn’t get a divorce. It broke my heart and surprised me too. I am not sure where he came up with that one as there were no signs that it was going to happen. I didn’t wish for a happy marriage, I actually wished for good health. Isn’t that a kick in the you now what. I did get finally get my wish but only after some trauma in the health department.
So this year I learned my lesson and I am not wishing for health. This year I am wishing to win the lottery, we will see how I make out with that one ;).
Yesterday marked our fifth wedding anniversary. We were married on the beach in Mexico which is where I would like to be right now. It’s grey and rainy and it will be for the next few months. An escape to some where hot and sunny would be very welcome.
This was a rather tough year for us. I became unemployed, went back to school as a graduate student, was diagnosed with a brain tumour and had a craniotomy. That is a lot of changes for a marriage to endure in a short period of time. Throw two little kids into the mix and it could have been a recipe for marriage disaster. BUT it wasn’t. Thankfully we figured out how to hold it all together and end up in a better spot than we were a year ago.
The “in sickness and in health” part of our marriage vows were really tested this year. A test that I ignorantly thought wouldn’t happen until we were much older. My husband was amazing throughout the brain tumour process. He remained calm and when I though my world was going to crumble. He held it all together, he never wavered, and most importantly he never lost faith that everything would be OK. I asked him often if he was scared and all he would ever say was “not yet”. His strength gave me tremendous strength which I am very grateful for. I understand now when someone makes reference to another person “as their rock”. I get it, I have one. This year was a big test and I am proud to report that we passed.
To celebrate five years of marriage we managed to escape overnight without the kids. We have the most amazing babysitter/friend on the planet who came and stayed with the kids. We spent the day at the spa and then ate the most amazing dinner, and enjoyed the quiet of the oceanview suite. The fifth anniversary is wood, and we were staying in a log cabin, sleeping in a bed carved from tree branches. If that isn’t enough wood I made this Christmas tree decoration as a present for my husband. Confused he asked if he was supposed to wear it around his neck and I was like “who do you think you are Mr.Tee?” It is made from a tree branch from our yard with string that was used on our wedding invitations. It isn’t the most glamorous gift I have ever given but it’s the thought that counts.
I ran and just to clarify no one was chasing me. Running might not seem like a big deal but 8 weeks post brain surgery it is. Running was the last thing on my post craniotomy “to do” list. My brain tumour issues started over Christmas break 2014 when I got sharp pains in my head from an increase in blood pressure. Running was one of the few things that my doctors suggested that I didn’t do when I was diagnosed with a brain tumour. As a result it has been 9 months since I have been running or done any form of vigorous physical activity. Running had been my only form of exercise because it’s free, easy and fast. We were given a treadmill so it’s both free and convenient. I don’t have to arrange childcare to exercise, and I can run at any time.
When I was diagnosed with a brain tumour I stopped exercising. In truth when I got diagnosed I stopped doing everything but as the weeks progressed I started getting back into my old routines. Exercise was a struggle and I started packing on the pounds. So my husband and I changed our eating habits to compensate. Eating clean helped and I walked and things were under control. Then I went in for surgery and for 4 weeks post surgery I didn’t do much in the way of exercise. The first few days in the hospital I couldn’t eat, but then I was starving. My logic was that my body was healing from a pretty invasive surgery and if I was hungry I would eat. I wasn’t eating grass clipping (salad) though, I was eating whatever I wanted. The weight that I had lost before surgery had crept its way back during my recovery. I went to my GP after 4 weeks and was told to hold off on the running until I saw the neurosurgeon. I saw my surgeon 8 weeks post surgery and he said to try running and see how I feel.
In truth I was a little scared to try running again. What if I got dizzy, fell and hurt myself? I am a little worried about bumping my head now. But I ran anyway. I ran for 10 minutes stopped and cried. Not because my head hurt, not because I was dizzy but because I did it. Running marked the END. I completed everything on my post surgery to do list. I have come full circle and I am back at a new beginning.
P.S when I run now I don’t cry. I just run and watch Netflix :).
I picked my three year old up from preschool last week and they had just finished a thanksgiving project about what they are thankful for. I couldn’t help but laugh when I read his response. He is thankful for the snacks in the snack box. I supposed that I am thankful for the snacks in the snack box too, especially around 3 in the afternoon. But I wouldn’t say that the snacks in the snack box are at the top of my list.
I can’t help think how different my “Thanksgiving List” is this year. Last year at this time I didn’t even know I had a brain tumour. Now here I am 9 weeks post surgery. Here is my top ten things I am thankful for this year.
I am thankful:
to be alive and healthy without a brain tumour
that it was me with the brain tumour and not my kids or my husband
that my husband took the “in sickness and in health” part of our marriage vows to heart. We pulled each other through this brain tumour fiasco together.
for my kids because even on the bad days they gave me a reason to get my crap together
my neurosurgeon’s steady hands
that neither Timmy or the neurosurgeon did any permanent damage to my brain
for my parents who took care of the kids and the house so that all I had to do was get better, and all my husband had to do was take care of me
for my family, friends and blog readers for the guidance, free childcare, meal-train meals, cards, gifts, flowers, prayers and support you all rock
that a brain tumour cost me a grand total of $33.00 ($8.00 for the drugs my drug plan didn’t cover and $25.00 in parking at the hospital for the week so my family could come and visit me)
plus all of the things that I am thankful for every year
In July I saw a call for artists for a Brain Cancer/Tumour art show. The deadline to register for the show was the day that I was supposed to have brain surgery (July 31) I of course saw it as a sign. I can convince myself that almost anything is a sign such as a Monk on a cell phone in McDonald’s parking lot. One morning I woke up with an idea, I reached over grabbed my sketchbook from beside the bed (blew off the dust) and got drawing. I could visualize my emotional brain tumour journey in paper and colour. This is my sketch.
I have written about my brain tumour experience and shared some details that I know some people think are intimate. I never felt as though I was divulging too much of myself, I was totally comfortable with the words and pictures I used. But showing this piece is much more difficult because it’s like showing my soul. I feel naked, exposed and raw. At the same time it was really what I needed. I needed to get those emotions out and have a good look at what I went though. I am a visual person I needed to see the journey.
I am sharing because creating is how I deal with everything. I was planning on making this piece for my recovery time, I needed a focus and a creative outlet. Often I am making to distract myself from reality, or to feel a sense of accomplishment. In this case I am blatantly dumping out my emotions onto paper.
After surgery on August 7th I began working on this piece as part of my recovery process. I finished it just before the September 10th deadline. The timing of this exhibition was perfect for me. I am so thankful that this show was happening at this time it gave me the inspiration to create.
Climbing a Mountain was inspired by my recent brain tumour experience. On March 18, 2015 I was diagnosed with a brain tumour. Through the use of paper I depict the emotional journey of being diagnosed, living with and having surgery to remove a meningioma brain tumour. The journey starts in the bottom right of the piece and travels along the white path of hope past depression (grey/blue), fear (black), anger (red) and anxiety (yellow). The seven black 2.9 cm paper circles represent the hours spent in surgery and the size of the tumour removed.
This piece will be on display at the “Brain Cancer Got Me Thinking” exhibit which runs from October 7-13 at the Visual Space Gallery in Vancouver. A preview of the show is available here.
Today, October 1 kicks off the first day of Brain Tumour month in Canada. Last year at this time I was oblivious to brain tumours. This year is a totally different story. I have been living 8 weeks without Timmy the brain tumour!! Yesterday I had what I hope was my last appointment with my neurosurgeon. He confirmed once again that he got all of the tumour and it wasn’t cancer. Even though I have heard it before it’s still pretty exciting news. The chances of regrowth are very slim.
I have noticed a rather odd side effect to the surgery. Occasionally I struggle with spelling. This is probably not even something that I would have noticed if I wasn’t writing assignments for graduate school. Every once in a while I struggle to get the letters in the right order. It’s been so bad that I couldn’t figure out the second letter in a word that I should know how to spell, so spell check and google are no help to me. Words with c’s and x’s are particularly troublesome. If I am still having an issue spelling after Christmas I will have to go back and see the doctor. Aside from the fact that I won’t be winning a spelling bee anytime soon I don’t think that it will have much of an effect on my studies.
The only thing left on my to try after surgery list is running. It is what got me into this mess to begin with. Because my brain is still healing inside running can cause dizziness or nausea. My surgeon said to give it a try and see how I feel, so I am going to give it a shot. I am still slowly regaining feeling in my ear and the area around the scar. My scar is healing well and my hair is growing back. I think at this point its pretty safe to say that I have recovered, hooray!! Don’t tell my husband though because then he might stop cleaning the bathrooms.
It’s been 5 weeks since my craniotomy to remove Timmy the tumour. This past week was also the first week back to school. My oldest started grade 1 without any tears, which was a very big deal. I started back to school pursuing a MBA online for my third semester. My youngest starts preschool next week which we are both looking forward to. My husband was at a conference all week and basically came home to change and sleep. On Thursday he flew to Ontario for the weekend to spend much needed time with his family.
For the transition back to school I was pretty much flying solo and by Friday I was so proud of myself. I had S to school everyday on time with a healthy lunch and clean clothes. I managed to complete the course work for the first module in two of my classes. I finished an art piece for a juried Brain Tumour exhibition. The kids had an after school play date three of four school days. I hit my fitness goals twice in the week by walking S home from school. I even managed to bake a cake for my cake decorating class. My house was moderately clean which is about as clean as it ever gets. I felt like I was on top of the world. After four weeks of resting it was a busy week.
I had registered for a cake decorating class in June and after the first class the instructor had to cancel because he had to have surgery. Then I had to have surgery so we coordinated schedules and I am back to class in September. This class requires that I bake something every week so that I have something to decorate. Which also means that I have way too much baking in the house thankfully our babysitter accepts payment in cupcakes!!
Saturday morning my youngest had a runny nose which isn’t such a huge deal, but then my oldest started throwing up. He had a fever and it was probably the sickest he has ever been. He slept with me so I could keep an eye on him and we have an en-suite. I knew that the kids would be fine they bounce back from being sick so quickly. But I have been afraid of getting sick since I had surgery. I am not interested in a head cold because my head is still healing. I am really not interested in throwing up for many reasons but primarily because I am supposed to stay away from jarring activities. Plus does anyone ever want to get sick.
The chances of making it through the weekend without getting sick were not in my favour. Saturday night I got a sore throat and was congested. But on the bright side I can now sleep on the left side of my head! After 5 weeks of only sleeping on my right side it a welcome change to sleep on my left. It was pretty much a necessity to be able to switch sides so that I could breathe. Perhaps this cold is my body’s way of telling me to slow down and rest again, or it’s those germy kids either way I am going to have an afternoon nap. If I have learned anything from this brain tumour it’s that we should listen to our bodies, we only get one and it’s a gift that needs to be taken care of.