Do you remember snow globes? Those magical little water filled scenes with white flakes. If it was REALLY special it had silver glitter that made it look like it was snowing forever. I remember one I had as a child, it had trees and children skating on a pond. I loved shaking it and watching the snow cover the children, falling ever so gently on the evergreens. If you placed it on a hard surface the flakes would balance on the trees until someone flipped it once again.
Today, I realized that my recovery is very much like a snow globe. In January, my brain was shaken up like one of those precious globes. When I think back to those early weeks and months, it's all a haze, a freshly shaken globe. Slowly the pieces started falling into place. There are days when I feel like my globe is almost clear and then there are days like today. When my balance is off, my thoughts aren't clear and an exhaustion that is indescribable. Shocks to my eye, brain itch and an inability to remember how to spell the simplest of words has me thinking "who shook my globe?" It doesn't take long to realize that I already know the answer to that question. Brain tumours don't let you forget
Sunday, August 25, 2013
Friday, August 23, 2013
My Good Karma Gift
OK it's time to share my news. It's not a car, it's not the lotto, it's a makeover. I KNOW!!! Seriously exciting for a girl who has had a little bit of a rough year!!! Urban Hair located in Lower Sackville was giving away a full makeover on their Facebook page, I entered and I won. YIPEE I am beyond excited. I know two of my friends who get their hair done there and have been over the moon happy with the end result. Soooooo I get pampered for 5 hours, that's right FIVE hours, next week. OH MY GOODNESS!!!! I get a mani and pedi, my hair done AND makeup. I would use the term I have died and gone to heaven but that's totally not cool when you have a brain tumour. So, I will say that it's a gift I received for good Karma. I always do my best to try and give back to my community whether it's raising awareness for a good cause or raising funds for one charity or another. I think it's important to share what you can and for me that has always been my time. If anyone has learned the true meaning of time this year it's me. This will be 5 hours not spent in a waiting room, hospital or with a Doctor. It's 5 hours of fun. I can't wait to meet the staff at Urban Hair and spend the afternoon with them. I'm a lucky girl in so many ways.
Thursday, August 22, 2013
It's a # Kind of Day
It's #BrainTumorThursday. The day when all my fellow survivors flock to twitter to raise awareness. Last #BTSM (which stands for Brain Tumor Social Media by the way) talked about what a brain tumour is and how they can be Primary or Secondary, Malignant or Benign, any of these are a pain in the brain to say the least.
I get a lot of support from a couple of websites but the one I head to most often is Brain Tumour Foundation of Canada. It is FULL of all kinds of useful information, support and others just like me. I rely on their facts because they pertain to whats going on in my neck of the world, Canada. So here is just a few unbelievable but true facts: (Thanks BTFC for this information)
~Every day 27 Canadians are diagnosed with a brain tumour. EVERYDAY...think about it!!!
~There are 55,000 Canadians surviving with one in their head this very second
~There are over 120 DIFFERENT kinds of Brain Tumours. Seriously 120+
~Primary brain tumours (which is what I have, we talked about that last week) occur in about 8 out of 100,000 people (I should buy a lotto ticket!!!) The number rises to approximately 32 out of 100,000 when the metastatic tumours are included.
~In the first year after diagnoses (Mine will be October 3, which just happens to be Brain tumour awareness month by the way) the average patient will make 52 visits to their health care team (These can include Neurologist, Neurosurgeons, radiation, blood work, physio the list goes on and on)
~Brain tumours are the leading cause in solid cancer death of children under the age of 20. Now surpassing acute lymphoblastic leukemia. Third leading cause in solid cancer deaths in adults age 20-39
~Because brain tumours are located in the "command centre" of the body, emotions, thought processes, movement and life in general, they can dramatically affect an individuals life.
~Currently the Canadian Medical System does not tract primary brain tumour stats (hmmm What's up with that?)
As I've mentioned before I also frequent and I'm a member of It's Just Benign a site that is there to help those of us who have benign brain tumours, because they suck too!!! I guess the point of today's post is to get the world out and educate. Brain tumours are big, bad and scary but with the support network I've built and found through social media sites I'm coping and that's pretty awesome.
I get a lot of support from a couple of websites but the one I head to most often is Brain Tumour Foundation of Canada. It is FULL of all kinds of useful information, support and others just like me. I rely on their facts because they pertain to whats going on in my neck of the world, Canada. So here is just a few unbelievable but true facts: (Thanks BTFC for this information)
~Every day 27 Canadians are diagnosed with a brain tumour. EVERYDAY...think about it!!!
~There are 55,000 Canadians surviving with one in their head this very second
~There are over 120 DIFFERENT kinds of Brain Tumours. Seriously 120+
~Primary brain tumours (which is what I have, we talked about that last week) occur in about 8 out of 100,000 people (I should buy a lotto ticket!!!) The number rises to approximately 32 out of 100,000 when the metastatic tumours are included.
~In the first year after diagnoses (Mine will be October 3, which just happens to be Brain tumour awareness month by the way) the average patient will make 52 visits to their health care team (These can include Neurologist, Neurosurgeons, radiation, blood work, physio the list goes on and on)
~Brain tumours are the leading cause in solid cancer death of children under the age of 20. Now surpassing acute lymphoblastic leukemia. Third leading cause in solid cancer deaths in adults age 20-39
~Because brain tumours are located in the "command centre" of the body, emotions, thought processes, movement and life in general, they can dramatically affect an individuals life.
~Currently the Canadian Medical System does not tract primary brain tumour stats (hmmm What's up with that?)
As I've mentioned before I also frequent and I'm a member of It's Just Benign a site that is there to help those of us who have benign brain tumours, because they suck too!!! I guess the point of today's post is to get the world out and educate. Brain tumours are big, bad and scary but with the support network I've built and found through social media sites I'm coping and that's pretty awesome.
Saturday, August 17, 2013
Gifts From Good Karma
I have been beyond excited to find all kinds of support on Twitter. There is a whole world of Brain Tumour survivors, some who had tumours, and those of us still with them. Some are fighting the battle of their life with Brain Cancer and others fighting the battle of their life with benign ones. My point is, Brain Tumours are a fight no matter what you have going on in your head and supporting each other is a must. I had no idea just how much I needed to hear from others or read other's journeys, struggles and triumphs until I went into the cyber world.
I started this blog more as a journal really. A place to put my feelings both good and bad. There are days when I love what I write and days when I think "man I was having a bad day." Either way, I've put my feelings out there for all to read. And if only one person reads something and is in a better place because of something I wrote then I feel like I've made a difference. That's good Karma. Something you should never looks for, ask for or expect but good Karma will always find you. I received a gift of good Karma today in fact, and I will write all about it in the coming weeks.
Thursday, August 15, 2013
Brain Tumour Thursday
Although I've been walking around with what's left of my brain tumour for 7 months now. I'm just figuring out that there is an entire social media world who dedicates Thursdays as Brain Tumour Thursday. Throw a # in front of that with the American spelling and you get #braintumorthursday on Twitter Who knew? Obviously not me until today. So I guess since I have one of these life changing blobs in my head I should jump on the Thursday band wagon and educate my followers.
Here's my first Thursday's contribution:
We will start with the basics today...What is a brain tumour? It's a mass of abnormal cells in and around the structure of the brain. There are primary and secondary brain tumours. The difference is, primary originated from cells within the brain and stays there. Secondary originated from cells somewhere else in the body, such as breast cancer. Brain tumours are not well behaved little creatures and I will talk more about their teenage like behavior next Thursday.
Here's my first Thursday's contribution:
We will start with the basics today...What is a brain tumour? It's a mass of abnormal cells in and around the structure of the brain. There are primary and secondary brain tumours. The difference is, primary originated from cells within the brain and stays there. Secondary originated from cells somewhere else in the body, such as breast cancer. Brain tumours are not well behaved little creatures and I will talk more about their teenage like behavior next Thursday.
Sunday, August 11, 2013
It's Not Just Another Day
Sooooo here we are, 7 months ago today I had brain surgery. Crazy eh? Not sure if I'm referring to the brain surgery part of the 7 month time lapse. Both I suppose because it's surreal no matter which one you are talking about. How could 7 months pass. It seems like yesterday I had my brain surgery, yet I know how many obstacles I have yet to overcome.
During my surgery they did brain mapping. Wouldn't it be cool to see what that looked like. Think about it, there are people who first, actually saw the inside of my brain and second, mapped out my brain and it's function. A copy of that to show the grand kids would be pretty neat!!! Hopefully by then, since my kids are young, they will have less invasive techniques and my brain mapping slide show would be "old school"
All jokes aside the 11th of every month is never an easy day for me. Some months are better, this isn't one of them. Brain tumours suck as anyone who has one will surely agree. Tomorrow however, is a brand new day and like every day I will do my best to "give it my all"
During my surgery they did brain mapping. Wouldn't it be cool to see what that looked like. Think about it, there are people who first, actually saw the inside of my brain and second, mapped out my brain and it's function. A copy of that to show the grand kids would be pretty neat!!! Hopefully by then, since my kids are young, they will have less invasive techniques and my brain mapping slide show would be "old school"
All jokes aside the 11th of every month is never an easy day for me. Some months are better, this isn't one of them. Brain tumours suck as anyone who has one will surely agree. Tomorrow however, is a brand new day and like every day I will do my best to "give it my all"
Saturday, August 10, 2013
Second Chances
Yesterday I wrote a blog, I called it weighed down. I didn't publish it even though it's exactly how I feel. It talked about how life is measured in weights. Your born, you are weighed, and oddly judged on that weight, big baby, tiny baby. Society spends millions of dollars on the weight loss battle, aiming it all towards the battle of the bulge due to over indulgence. But what about those who can't? Simply can't, for whatever reason, exercise? We never think of those people, we just think people are fat because they can't put the fork down. Well, as I begin to get out of the house a little more and walking has become a far easier task. I think about all those people, because I'm one of them. It will be 7 months tomorrow and I'm just starting to feel myself. I thought I was there a few months back, but a stint of thinking I was super women, had me over doing it. Dumb thing to do, and now I realize that it's slow and steady that truly wins the recovery race. This all weighed heavily on my mind...just another form of weight.
So as I whined yesterday and felt overly sad for myself, I vowed to wake up a little different. Today I thought about what I'm truly thankful for and the first thing that came to mind is second chances. I've been given many in my life, so many that I was surprised when I started to think about them.
Growing up in a house of abuse my first memory of a second chance is travelling home in the back seat from the Portage Hotel. No one was in any state to drive as we barreled back to our house in Stark's Corner. I was the tender age of 8, my sister 12. We were sleeping in the van because that's what drinking parents did with their kids, left them there to sleep as they chugged back a few. I remember the engine's high pitch whine and the feeling of my stomach in my throat as we flew over the hills. My Mother reaching back with her hand to protect us like an imaginary seat belt. I remember clearly praying to get us home safe. A second chance was indeed granted.
Sometimes we don't get second chances as this same road claimed a dear family member many years later, nothing to do with speed or alcohol. Just bad timing. I said goodbye to a casket, regrets of not enough visits home, not enough phone calls, now realizing that there aren't always second chances.
Becoming a ward of the court and becoming a foster child was certainly a second chance. Foster parents and foster siblings who actually cared. Trusted me enough to go out and cared if I came home. Food, glorious, delicious food. Meals around the table like a family. A packed school lunch. A shower, running water, a toilet. A different outlook on life is before me. There is love in this house, I feel at home. Yes this indeed was a second chance. I am blessed and I know it at the age of 15. A second chance at life.
My daughter was born with immune system issues. At the age of 9 she was hospitalized with H1N1, the Swine Flu had found her, despite all my efforts to try and keep her away from it. Fourteen days in hospital contained some of the scariest days of my life. All I could do was pray as I, like everyone else, had no idea what this virus was capable of. The insertion of a chest tube is what saved her life. I am convinced of that, as litres of fluid poured from her tiny plural space. I honestly don't know if I should look at this experience as my second chance with her or her second chance at life. Either way, I know how precious life is as we don't always win the fight.
And then there's me, with this whole brain tumour thing. Someday's when I say it out loud I still can't believe I have a tumour, add brain surgery to that and it becomes almost "movie" like. I guess I've been given one more second chance. A chance to live life, even though it's very different then pre-surgery. I'm here to tell about it and that's pretty fantastic. I love my second chances...each and every one.
So as I whined yesterday and felt overly sad for myself, I vowed to wake up a little different. Today I thought about what I'm truly thankful for and the first thing that came to mind is second chances. I've been given many in my life, so many that I was surprised when I started to think about them.
Growing up in a house of abuse my first memory of a second chance is travelling home in the back seat from the Portage Hotel. No one was in any state to drive as we barreled back to our house in Stark's Corner. I was the tender age of 8, my sister 12. We were sleeping in the van because that's what drinking parents did with their kids, left them there to sleep as they chugged back a few. I remember the engine's high pitch whine and the feeling of my stomach in my throat as we flew over the hills. My Mother reaching back with her hand to protect us like an imaginary seat belt. I remember clearly praying to get us home safe. A second chance was indeed granted.
Sometimes we don't get second chances as this same road claimed a dear family member many years later, nothing to do with speed or alcohol. Just bad timing. I said goodbye to a casket, regrets of not enough visits home, not enough phone calls, now realizing that there aren't always second chances.
Becoming a ward of the court and becoming a foster child was certainly a second chance. Foster parents and foster siblings who actually cared. Trusted me enough to go out and cared if I came home. Food, glorious, delicious food. Meals around the table like a family. A packed school lunch. A shower, running water, a toilet. A different outlook on life is before me. There is love in this house, I feel at home. Yes this indeed was a second chance. I am blessed and I know it at the age of 15. A second chance at life.
My daughter was born with immune system issues. At the age of 9 she was hospitalized with H1N1, the Swine Flu had found her, despite all my efforts to try and keep her away from it. Fourteen days in hospital contained some of the scariest days of my life. All I could do was pray as I, like everyone else, had no idea what this virus was capable of. The insertion of a chest tube is what saved her life. I am convinced of that, as litres of fluid poured from her tiny plural space. I honestly don't know if I should look at this experience as my second chance with her or her second chance at life. Either way, I know how precious life is as we don't always win the fight.
And then there's me, with this whole brain tumour thing. Someday's when I say it out loud I still can't believe I have a tumour, add brain surgery to that and it becomes almost "movie" like. I guess I've been given one more second chance. A chance to live life, even though it's very different then pre-surgery. I'm here to tell about it and that's pretty fantastic. I love my second chances...each and every one.
Sunday, August 4, 2013
The Joys of Life
Hot summer days are hard on my head, simply due to this crazy humidity that never leaves in Nova Scotia. However, last night it was a little cooler and I set out to mow the grass. All these small things when you are still recovering are HUGH. This is not my first try at this job and luckily my grass is just a wee bit bigger then a postage stamp. When I finished I will admit I was tired but the pounding throb in my head was far less noticeable. Hmmm this is progress as I admire the fresh cut grass. In my "before brain surgery" life mowing the grass was usually done after working all day, with some whipper snipping, and maybe some weeding to go along with it. But for now, mowing the grass and living to tell about it is fantastic.
The amount of rest I require between task seems to be lessening. Doing laundry does not do me in for a day anymore. I might even get the bathroom cleaned on the same day!!! I KNOW...I'm blown away too.
Months ago I couldn't stand being in the grocery store or Wal-mart because of their shinny floors. Shinny floors and my eyes didn't get along. I'm happy to report that looking at the floors in box stores no longer make me want to throw up. This is progress!!! :) I still have photophobia, sadly this is not something they can correct with the prisms so I might be stuck with that one. So my solution...don't look directly at any lights.
When you are in the crazy part of your recovery ( the beginning when everything is happening all at once) you really have no clue where you stand. It's all too complicated, too busy, too scary. I finally feel like I have things under control. I understand what I can and can't do, my limitations both mentally and physically. I realize that I'm never going to be the same as I was pre-brain surgery. But maybe that's not who I was meant to be. Perhaps my calling is to share my brain tumour and brain surgery stories to others in similar situations. Just as I so desperately searched for this exact thing when I was scared out of my mind. Maybe the point is for those of you who are healthy to thank God, Karma, Fate..whatever you believe. Be grateful, be thankful that you are not dealing with health issues.
Life is short, call a friend, kiss someone, adopt a dog, eat chocolate, sing with the windows open. Start living your life because the joys of life are good for your soul.
The amount of rest I require between task seems to be lessening. Doing laundry does not do me in for a day anymore. I might even get the bathroom cleaned on the same day!!! I KNOW...I'm blown away too.
Months ago I couldn't stand being in the grocery store or Wal-mart because of their shinny floors. Shinny floors and my eyes didn't get along. I'm happy to report that looking at the floors in box stores no longer make me want to throw up. This is progress!!! :) I still have photophobia, sadly this is not something they can correct with the prisms so I might be stuck with that one. So my solution...don't look directly at any lights.
When you are in the crazy part of your recovery ( the beginning when everything is happening all at once) you really have no clue where you stand. It's all too complicated, too busy, too scary. I finally feel like I have things under control. I understand what I can and can't do, my limitations both mentally and physically. I realize that I'm never going to be the same as I was pre-brain surgery. But maybe that's not who I was meant to be. Perhaps my calling is to share my brain tumour and brain surgery stories to others in similar situations. Just as I so desperately searched for this exact thing when I was scared out of my mind. Maybe the point is for those of you who are healthy to thank God, Karma, Fate..whatever you believe. Be grateful, be thankful that you are not dealing with health issues.
Life is short, call a friend, kiss someone, adopt a dog, eat chocolate, sing with the windows open. Start living your life because the joys of life are good for your soul.
Thursday, August 1, 2013
Happy Belly on Hot Days
As I said in my last post I've been trying to figure out things I can do for my health. One of my health problems that is totally unrelated to my brain tumour is diverticulosis. This little problem I have can cause big problems if I don't keep in check. Diverticulosis are small pouches on the inside of the colon.. These pouches are not normally a problem unless you misbehave with your diet and then you can develop painful diverticular disease. The symptoms of this are similar to Irritable Bowel Syndrome, pain, in my case constipation and more pain. It's awful.
So one of the things that I figured out in the past two years is my body does not like wheat products, I have a Gluten Intolerance. Gluten is in EVERYTHING!!! When I took gluten from my diet, suddenly the painful bowels took a hike. As long as I stay on the diet, I'm ok. Well, I love bagels, and bread, and tea biscuits, and cookies and sauces, and...you get the idea, it's in everything. UGH!! So back on the Gluten Free diet I go. It takes a few days to get back into it and it helps to just not go anywhere so you don't have to see yummy delicious gluten foods. HaHa, although that would help, reality is you just have to stick to your guns and do it. In a few days I started feeling better as I always do when I jump back on my gluten free wagon. This time to treat myself I bought Betty Crockers Gluten Free Cake as a treat. Now normally anything Gluten Free in a box or bag is nasty!!! However, this cake was so yummy that it lead me the the Betty Crocker web site and I found all kinds of Gluten Free recipes...my mouth was watering. I am beyond excited to try out a few of these.
Hopefully if I make my belly happy, that will make my bowels happy which in turn has to make my head happy. Now if I could just remove the humidity from the weather here in Nova Scotia.
So one of the things that I figured out in the past two years is my body does not like wheat products, I have a Gluten Intolerance. Gluten is in EVERYTHING!!! When I took gluten from my diet, suddenly the painful bowels took a hike. As long as I stay on the diet, I'm ok. Well, I love bagels, and bread, and tea biscuits, and cookies and sauces, and...you get the idea, it's in everything. UGH!! So back on the Gluten Free diet I go. It takes a few days to get back into it and it helps to just not go anywhere so you don't have to see yummy delicious gluten foods. HaHa, although that would help, reality is you just have to stick to your guns and do it. In a few days I started feeling better as I always do when I jump back on my gluten free wagon. This time to treat myself I bought Betty Crockers Gluten Free Cake as a treat. Now normally anything Gluten Free in a box or bag is nasty!!! However, this cake was so yummy that it lead me the the Betty Crocker web site and I found all kinds of Gluten Free recipes...my mouth was watering. I am beyond excited to try out a few of these.
Hopefully if I make my belly happy, that will make my bowels happy which in turn has to make my head happy. Now if I could just remove the humidity from the weather here in Nova Scotia.
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