This is about the daily struggles and miracles of waiting to die with a critical illness. I have brain tumours that can never be cured. When I received my diagnosis I was given two weeks to live, but it has been eight years, and many treatments . My life is for a reason and until I accomplish that I will keep “painfully waiting”. This is my journey.
I guess I just have to admit it. I can no longer ignore what is staring me in the face day after day… I am sleeping what is left of my life away. Sleeping. Precious time that I could be doing something valuable or accomplishing something that has some sort of value to someone. But no, I don’t. Instead I have nothing to show for myself, nothing to my name. Instead I sleep my time away.
My days seem to be getting shorter and shorter because of it. I am awake far less now a days, and when I am awake, I am so exhausted nothing gets done. It seems that the days fly by, and if I were to sit down and figure it out, I bet I am awake less than ten hours a day. I easily can sleep away 12-14 hours a day if I were to add up naps, and include the times I fall asleep at the hospital and doctors office.
I have started to notice how quickly the day is over for me now.
I was not too sure where to start with this post but I wanted you all to know I am now out of the hospital and back in my own bed, thank God. The next post will explain my hospitalization and all that lead up to it. This post will just be ramblings of someone who is tired and has had a long week. So with that being said…I am struggling.
These past weeks have been really hard and I have been trying to battle this illness/infection, but I am not coping well. I know I am not the only one out there who feels like they can never get a break, but I really do need something positive to happen to recharge my batteries. This past hospital stay was longer than I ever anticipated and I was shocked at just how quickly I fell ill. Not to mention just how serious it was.
Well I have my dates for my upcoming clinical trials. I officially start on October 3rd at 8 am. I also have now been informed it is more of an experimental treatment/procedure that will be chronicled for other physicians. I have been told it involves a lot of needles which will be inserted to target my nerve bundles. Sounds painful but I will wait it out and not be too anxious until I undergo the first trial. After that I will be going weekly into Vancouver for at least 12-15 weeks. I will let you all know how it goes and what the actual name of the procedure is. If I am late on my posts I apologize as my health has not been the greatest.
One thing is for sure I must admit I am taken back by the love and support I have received from all of my readers. Thank you so much and you honestly keep me going. I wake up now in the morning, still in pain, but get ready for my daily treatments now with a heart not so heavy. I am starting to feel like maybe I am going to make a difference. Possibly, they will figure out something from my trials to help even just one person. All the pain and silent crying would be worth it, if I could help just one person.
I just want everyone to know I still have not heard any news about my scan yet and I do not expect to hear for a little while. The MRI has to be read by a certain neurological radiologist, and he has a ton of patients. Obviously the waiting continues and I have been going to IV therapy all this week to gain some strength. I am still having trouble keeping food down but am trying my best, thank you all for your prayers and well wishes.
I will be posting later on today/tonight about how my MRI went and try to answer some of your questions about what exactly an MRI is like. This will be a little bit more of an educational post so it will not be all that entertaining. If you are a patient and are going for an MRI, or have a loved one going for one, and are wondering what they are like I will tell you.
I promise to be honest so I am warning the readers ahead of time… If you want to be clueless and just go for your test then do not read my post later on today. Take your happy pills, go to sleep, and wake up refreshed!
Hey, how come I don’t get any of those happy pills?
The night we found out tumor tissue had been detected on one of my MRIs again I decided I had to stop talking about my bucket list and actually put my dreams into action. I was going to do whatever the doctors said, but I needed to be realistic, I was never going to get better. I could live another 8yrs for all I knew with my treatments, but my bucket list needed serious revisions. So I took out a pen and started crossing things off. Most of all I needed to focus on the dreams that took some physical activity and effort.
My list happens to have categories (people, places…), so of course the Travel category was almost completely deleted. An african safari, the Great Wall of China, the pyramids in Egypt, praying in Tibet, visiting a remote tropical island with real coconuts (I am Canadian remember, and no I do not live in a house made of ice). All these adventures were unrealistic. My “Things” category got annihilated as well since most of them required physical activity and travel; swimming around the coral reefs, hiking on the Galapagos Islands, and white water rafting in the Tatshenshini River. All unrealistic and items I had put on a “To Do” list when I was healthy.
That is when I realized one of my bucket list wishes could actually be obtainable. In fact I could book it on the upcoming Vegas trip I had planned for my mother on Mother’s Day (2011). I wanted to go on a real sunset horseback ride and I could totally do that in Vegas. So I booked a Red Rock Canyon Sunset Dinner Ride.
I confess, I confess. I honestly am almost ten years behind in technology since I have spent so much time in hospital. You will have to be patient with me as I learn how to use this blog properly. I also have to admit I did not have any material written ahead of time before I posted public so I thought a few funny stories while I am laid up would be a good idea. Therefore, this is an introduction to my grade twelve year I spent after being scouted for an athletic school.
When I was 16 I left home to attend an athletic school in the United States. I was quite excited to be truly venturing out on my own, and I was not timid one bit. In fact, at this age my brain tumors were already in full force (which we did not know) and I believe they in a way made me a fantastic athlete. I would train six hours a day and not even complain to coaches. I was head strong, angry, driven, powerful and pompous. You would not have liked me back then unless you really understand how narrow minded competitive athletes have to be to succeed. The truth is if you do not believe you are the best, you never will be the best.
I was so excited because here I was going to be training at the Olympic facilities in Lake Placid New York, with real Olympic athletes. I had been scouted to play ice hockey and I could not have been happier. The only problem being I was currently training for the Junior Team Canada Field Hockey team also in Ontario, Canada. But in my eyes this was going to be a whole new start for me, I had nothing to loose. I was determined to be the best, in both sports, that was my plan. So I thought….
When I received my diagnosis I thought my life was over since I was only 22 and just starting my life. All my dreams and goals were shattered and my whole reality shifted. I laid up in the ICU in considerable pain because at this point I had already been through two brain surgeries, and they had not been successful. Just before my third emergency brain surgery my mother asked me, “If there was anything in the world you wanted, what would it be?” Honestly, I only had to think for one second, I wanted a dog! I was never allowed a pet and begged for a dog my whole childhood.
The nurses started rolling me towards the operating room and my mother teared up. Since I was not supposed to survive the first surgery, let alone the third, my mother sweetly smiled. I am sure she expected me to say, “Let’s go to Hawaii”. Instead all I wanted was a four legged friend to lay by my side. My mother kissed me on the forehead and said, “We will see.” I was rolled into the bright, freezing cold operating room with dreams of having a loving dog take me away from all of this. They would love me no matter how sick I was.
Having an illness can be taxing on anyone. Having an illness that can not be cured, for me, seems to change reality in the sense time is no longer relevant. If you have passed your “terminal” window the doctors give you, it just does not seem to matter what day it is. Some days are a marvel and you are so blessed to be alive, other days not so much. With experimental treatments and technology changing so fast, who knows how long my body can hold out.
I know that the doctors told me I had secreting tumours which could not be cured but I was still shocked when the neurosurgeon (a few months back) showed me my six month regular MRI scans. He pointed out to me the new tumour tissue on the computer screen, and I actually swore in my head. They have come back again.
I asked myself the exact same question the day I woke from my first brain surgery. I honestly can not even answer that question because I do not know, even now, who I am yet. I have two separate and unique lives; pre-brain surgery and post-brain surgery. The question I now face is, which one of these individuals is actually me?
When the doctors and I took a look back at my heath records and tried to map out approximately when my brain tumours started to grow, we have come up with around 12-13 years of age. As you can imagine this is right in the start of puberty when a child becomes a teen. This key developmental stage is important for the individual to figure out who they are, and what place in society they wish to fill. But do you believe an illness, such as a brain tumour, can really shape the individuals behavior and control their lives?
I need to get something off my chest that I had an epiphany about today. I was sitting down getting my medications ready for the day and I took a good hard look at them. All of them. All $5,000 per month (and that does not include the price of my pain meds which can be hefty). That is when my heart sank. I realized I have a lot more medication than I did last year. I finally had to acknowledge I was getting sicker.