It's here, the one year anniversary of Brain Surgery. This time last year I was in the OR, having my brain tumour "debulked" . I created a video in honor of my 1 year anniversary and while I'm pretty confidant that it will not win an Oscar, it will remain unpublished for some "tweaking" Not to be confused with "twerking" there will be NO twerking in that video. So, here in no particular order is what I've learned in the past 365 days?
That brain surgery as necessary as it is, Sucks!!
That a brain tumour is simply a mass of cells who get together and plan an "out of control teenage party" in your head. As much as you think you can clean up the broken pieces, you just can't replace some of the valuables.
That the first few weeks of recovery were nothing like I had expected.
That the next few months of recovery were nothing like I had expected.
That the word " Time" became as much a part of me as my brain tumour itself.
That being Canadian is something to not only be proud of, but to be grateful for.
That LOVE is "in sickness and in health"
That you learn very quickly who the important people are in your life.
That the above statements truth was a powerful enlightenment.
That you can have a headache everyday.
That I will not let my brain tumour define me.
That my brain tumour has now become a big part of who I am and that's OK.
That people have an expectation of when you "should" be better.
That my brain thinks differently now and I find that fascinating and frustrating.
That being home with my kids for the past year is a silver lining in all of this.
That I thank God for each day.
That expressing my thoughts into words is like putting a jig saw puzzle together every day.
That life as I knew it does not exist anymore.
That I'm grateful for all my specialists.
That my life is great, even with teenagers partying in my head.
That perspective is way bigger then what we perceive.
That I took my perfect vision for granted, learning to live with double vision is interesting to say the least.
That Doctors are busy, the health care system is tasked and at the end of the day it's a business like any other business.
That MRI's are hateful and I still don't sleep the night before.
That Canada is NOW working towards counting every Brain Tumour, but it will take time.
That benign brain tumours although depending on location can be just as life threatening as malignant ones.
That my children remain fairly silent and I fear they are angry at me for getting sick.
That this is to big for me to even understand so how could I ever expect my kids too.
That life is too short not to eat Gluten every now and then, even when I suffer the next day.
That blogging makes me feel good, brings out raw emotions and allows me to express this journey.
That I never expected side effects from surgery, even though it was brain surgery.
That I am grateful I am alive, walking and taking however, I'm sick of my other symptoms being down played simply because I'm alive.
That I've learned more about myself in 365 days then in 40 years.
That having a hole in your head is just plain weird.
That I miss my job, my co-workers and the smell of 70% isopropyl alcohol and transpore/mircopore tape.
That science hasn't even come close medically to understanding the brain.
That in a perfect world Neurosurgeons would have brain surgery so they could truly understand that we are not all "text book" cases. Perhaps there will be an "app" for that someday.
That I'm not afraid some days.
That I am afraid the other days.
That I continue to raise my kids in a a silly, loving, off the cuff manner, hoping they will learn that strength can come from your weakest moments.
That watching your kids minds process the fact that mom couldn't get the fork to her mouth, was just as confusing for us all.
That I have come a long long way in 12 months and no intentions on slowing down.
That radiation scares me but know it's something I should probably consider.
That having two caring and considerate children is a product of good parenting and God's will.
That I sometimes wonder what I would be complaining about right now if I was healthy.
That I'm grateful to Global News for thinking that Canada not having a National Brain Tumour registry is "newsworthy"
That I sit in silence way more then I used to.
That I can't imagine a life without T Jay, I am grateful and thankful for his unconditional love.
That health should not be measured in weight and height but defined in a mental state.
That I'm the luckiest Woman and Mother in the world.
That I'm thankful for the Twitter community of #BrainTumorThursday and #BTSM for their support
That my problems are no different then your problems..
That our society defines you by the work you do, being a brain tumour survivor was not in the "career choices" book at school. Yet at the moment that is my full time job.
Hi my name is Kelly, I'm a Brain Tumour Survivor and I'm recovering one day at a time.
Showing posts with label love. Show all posts
Showing posts with label love. Show all posts
Saturday, January 11, 2014
Tuesday, July 16, 2013
Love Is...YOU
July 8th 2012~You txt me out of the blue, explaining who you are, and asked if you could take me out to dinner? I thought who goes out to dinner? I txted back saying how about coffee/tea or ice cream? Just in case you were a crazy nut, I would only have to spend half an hour with you. Your return txt, and I quote..."you have to eat don't you? We can have coffee/tea and ice cream after dinner" I stare at my phone and wonder who is this guy, I respond back with a "sure why not" thinking he's a bit of a smart aleck.
July 9th to 15th 2012~small get to know you txting revels he is indeed a smart aleck. This is either going to be a long long dinner or a fun one.
July 16, 2012~you pick me up at my house and open the truck door for me...interesting I think to myself, a man with manners and chivalry. You surprise me with taking me out for Thai food, wow, he is so much more then Boston Pizza!!! Conversation is ridiculously easy and as I babble on, you look up at me from your meal and smile at just the right time, not only are you listening but you get what I'm saying. At that moment I thought ohhhh no, I was just looking for coffee. Crap!!! Late into the evening the date continues, tea and ice cream do follow, you walk me to my door and a polite kiss good night. I can't stop thinking about you, yet I tell myself that I'm very happy as a single person.
July 17, 2012~Would I like to get together again? YES, yes I would
August 16th 2012~We have spent every day together, I really like your company and you haven't given me one reason to suspect you are crazy. Who are you? The following week you meet my kids, it's like we've all know each other for years. By the end of August you are aware of my Trigeminal Neuralgia and see how powerful and debilitating it is to me. This frustrates you as a Paramedic, helpless with no answers. I see a Neurologist and am awaiting an MRI. I get a date, Oct 2, 2012, and we wait, you like everyone else reassuring me that it's nothing.
September 16, 2012~you are well aware and completely part of the planning process for my huge Christmas surprise for my kids. We have fun finding a place together that will be the perfect family vacation. We book the end of September.
October 2nd 2012~we are underway with the planning of our Halloween party, both thinking we are biggest fan ever!!! That day we travel to Antigonish, you poke light fun at my intense fear of going in the MRI tube. Having a hard time understanding my "there's no turning back now" in regards to answers, a feeling I just can't shake.
October 3rd 2012~The call. You come to my work place to find me in a heap of uncontrollable sobs, you spend the rest of the day with me as I perch myself on my thinking rock in Long Lake Park, not understand how I, at 40 could have a brain tumour. Who gets brain tumours? Why? What do I tell my kids? You are there to help me with all these questions and together we figure it out, one painful thought process at a time. It's more clear then ever, you are a gift from God, in the purest form, true Love.
A crazy whirlwind of appointments follow, pre-op, neurosurgery, family doctor and neurologist. You are there by my side to ask all the questions that I am too overwhelmed and stunned to ask.
November 9th 2012~We are up early, it's brain surgery day!!! I can't believe I'm having brain surgery, it just doesn't seem real. I'm scared, you reassure me, it's all going to be ok. My friend Heather is there with us. As I work at this same hospital my surgery is at, many of my co-workers parade through wishing me well. Tick Tick Tick goes the clock, we are delayed by an emergency. Very understandable. I finally fall asleep to be woken up by my neurosurgeon, another emergency. I've been cancelled. What? What do we do now? We go home and in shock I weep.
November 12th~I call in sick for work, I'm not functioning, I can't sleep, I can't eat, I can't stop crying. You are there with me, to help sooth every tear. Memories of childhood come flooding back, things I never even realized were there. Memories of being "let down by the system" when I was 25 and pregnant, finding out my 16 week old fetus had died but because it was December 23rd I had to wait until December 27th for a D&C to remove the baby. I am beyond angry and stunned suddenly at our medical system. Why does everything horrific happen to me at this time of year? I have cracked, but I don't know it yet. Still not functioning, you help with Christmas. This was supposed to be the best Christmas ever. You are amazing.
First week of December I go to see a councilor. I am raw with open wounds that I thought I had healed long ago. You stick by me, holding me, helping me, loving me and understanding me. It's going to be alright. I work through the feeling of abandonment and I come out the other side. I ask my doctor to return to work, I'm going to be ok.
First week of Jan~I'm back to work, feeling better mentally then I had felt in a long time. Your support has been more then anyone would ever expect. I so love you. I'm told that my surgery could be January 11th 2013. Mmmhmm we'll see when the day comes I think. I kind of prepare mentally but I'm not holding my breath. If it's not that day, I'm ok with it.
Jan 10th~we get the call, yup tomorrow is my day. You pretend to be ok, so do I
Jane 11th~We are up early, it's brain surgery day...again!!! Same room, same sweet lovely nurse. Guess what...a delay. Been here, done that, and we wait. I'm not scared this time and I'm truly at peace with whatever happens. Lets face it, it's brain surgery around my brain stem, we are not baking a cake from a box here!!! This is big time serious crap. We are told no bed for me, mmhmmm yup...I guess I'll be working Monday is what I think. 10:00 it's time, lets go we have a bed, it's show time. OH MY...I'm having brain surgery. We embrace and I know when you tell me everything is going to be ok, it is!!! I can feel your fear, we kiss and I'm off. Suddenly terrified, brain surgery, who has brain surgery!!! That's crazy.
Throughout the day you keep a journal of what the nurses said, who came to see how I was doing, and how you were feeling. You and Heather pass the long 10 hours somehow. I slept through it (I know bad joke) I awake to see you and Heather and I am sooo grateful that I woke up. I am so happy to see you, I know who you are, I can move my arms and legs, my head hurts.
Jan 11-16 I'm in ICU Step Down, you are there to feed me, walk me to the bathroom, even to bathe me. You are love in it's purest form. I know this at the time but can't express it. Everything is very confusing and I just don't feel like myself. I'm tired but you push me, I hate that. Nothing seems normal, you are there to help me through it.
Jan 17~you bring me home, I can barely stand, I can't see right and I still can't figure out how to get the food to my mouth. You are there by my side, never leaving, always helping, always loving, forever patient. I'm so glad to be home yet don't understand how in this state I could be.
Feb 16~Recovery is cruising along I can do this. WOW look at me go. I just can't see right and I keep falling over, well this is starting to suck!!!
March 16~Recovery continues, you get me a tablet for my birthday so I can make everything REALLY big on it. The Internet is now mine...muuhwaaahhhaha (evil laugh)
April 16~ We are experts at Doctor appointments. I have so many Doctors and you take me to every appointment. Asking all the right questions as I stumble my way through this.
May 16~I'm done, I don't want to play this game anymore. I'm tired of the stall, hurry up last leg of this recovery. I just want to get back to work. I miss my job, my co-workers, my friends. I miss my Independence. I become angry, this is NOT how I saw this happening. Find out my eye improved a little, Hooray!! Find out I have 25 radiation treatments in my future, Horrr...no..no there's no hooray, there is just an overwhelming feeling of this is not done yet. You are amazing, again the right questions at the right time to the right people. You do your best to joke through this new information to try and lighten the mood. I'm having none of it, I'm angry and it shows. You are amazingly patient with me, I don't know how you do it. There is not a day that passes that I don't thank God for you, you need to know that.
June 16~onward and upward, we trudge on, I'm getting some energy back, I over do it, you tell me this, as does my physio. I hate it when you are right. With grace you never tell me "I told you so". How are you so patient with me? You always say you are the luckiest man in the world. I say I'm the luckiest women in the world and know that God forbid, if the tables were ever turned I would do all the same for you. YOU are my soul mate. We truly know what the other needs or wants. I am blessed to have you in my life.
July 16th~One year from the day you took me out for Thai food. Never in a million years did I ever think I could love someone as much as I love you. T Jay, only you will understand my "mush puddle" love for you. You are LOVE.
July 9th to 15th 2012~small get to know you txting revels he is indeed a smart aleck. This is either going to be a long long dinner or a fun one.
July 16, 2012~you pick me up at my house and open the truck door for me...interesting I think to myself, a man with manners and chivalry. You surprise me with taking me out for Thai food, wow, he is so much more then Boston Pizza!!! Conversation is ridiculously easy and as I babble on, you look up at me from your meal and smile at just the right time, not only are you listening but you get what I'm saying. At that moment I thought ohhhh no, I was just looking for coffee. Crap!!! Late into the evening the date continues, tea and ice cream do follow, you walk me to my door and a polite kiss good night. I can't stop thinking about you, yet I tell myself that I'm very happy as a single person.
July 17, 2012~Would I like to get together again? YES, yes I would
August 16th 2012~We have spent every day together, I really like your company and you haven't given me one reason to suspect you are crazy. Who are you? The following week you meet my kids, it's like we've all know each other for years. By the end of August you are aware of my Trigeminal Neuralgia and see how powerful and debilitating it is to me. This frustrates you as a Paramedic, helpless with no answers. I see a Neurologist and am awaiting an MRI. I get a date, Oct 2, 2012, and we wait, you like everyone else reassuring me that it's nothing.
September 16, 2012~you are well aware and completely part of the planning process for my huge Christmas surprise for my kids. We have fun finding a place together that will be the perfect family vacation. We book the end of September.
October 2nd 2012~we are underway with the planning of our Halloween party, both thinking we are biggest fan ever!!! That day we travel to Antigonish, you poke light fun at my intense fear of going in the MRI tube. Having a hard time understanding my "there's no turning back now" in regards to answers, a feeling I just can't shake.
October 3rd 2012~The call. You come to my work place to find me in a heap of uncontrollable sobs, you spend the rest of the day with me as I perch myself on my thinking rock in Long Lake Park, not understand how I, at 40 could have a brain tumour. Who gets brain tumours? Why? What do I tell my kids? You are there to help me with all these questions and together we figure it out, one painful thought process at a time. It's more clear then ever, you are a gift from God, in the purest form, true Love.
A crazy whirlwind of appointments follow, pre-op, neurosurgery, family doctor and neurologist. You are there by my side to ask all the questions that I am too overwhelmed and stunned to ask.
November 9th 2012~We are up early, it's brain surgery day!!! I can't believe I'm having brain surgery, it just doesn't seem real. I'm scared, you reassure me, it's all going to be ok. My friend Heather is there with us. As I work at this same hospital my surgery is at, many of my co-workers parade through wishing me well. Tick Tick Tick goes the clock, we are delayed by an emergency. Very understandable. I finally fall asleep to be woken up by my neurosurgeon, another emergency. I've been cancelled. What? What do we do now? We go home and in shock I weep.
November 12th~I call in sick for work, I'm not functioning, I can't sleep, I can't eat, I can't stop crying. You are there with me, to help sooth every tear. Memories of childhood come flooding back, things I never even realized were there. Memories of being "let down by the system" when I was 25 and pregnant, finding out my 16 week old fetus had died but because it was December 23rd I had to wait until December 27th for a D&C to remove the baby. I am beyond angry and stunned suddenly at our medical system. Why does everything horrific happen to me at this time of year? I have cracked, but I don't know it yet. Still not functioning, you help with Christmas. This was supposed to be the best Christmas ever. You are amazing.
First week of December I go to see a councilor. I am raw with open wounds that I thought I had healed long ago. You stick by me, holding me, helping me, loving me and understanding me. It's going to be alright. I work through the feeling of abandonment and I come out the other side. I ask my doctor to return to work, I'm going to be ok.
First week of Jan~I'm back to work, feeling better mentally then I had felt in a long time. Your support has been more then anyone would ever expect. I so love you. I'm told that my surgery could be January 11th 2013. Mmmhmm we'll see when the day comes I think. I kind of prepare mentally but I'm not holding my breath. If it's not that day, I'm ok with it.
Jan 10th~we get the call, yup tomorrow is my day. You pretend to be ok, so do I
Jane 11th~We are up early, it's brain surgery day...again!!! Same room, same sweet lovely nurse. Guess what...a delay. Been here, done that, and we wait. I'm not scared this time and I'm truly at peace with whatever happens. Lets face it, it's brain surgery around my brain stem, we are not baking a cake from a box here!!! This is big time serious crap. We are told no bed for me, mmhmmm yup...I guess I'll be working Monday is what I think. 10:00 it's time, lets go we have a bed, it's show time. OH MY...I'm having brain surgery. We embrace and I know when you tell me everything is going to be ok, it is!!! I can feel your fear, we kiss and I'm off. Suddenly terrified, brain surgery, who has brain surgery!!! That's crazy.
Throughout the day you keep a journal of what the nurses said, who came to see how I was doing, and how you were feeling. You and Heather pass the long 10 hours somehow. I slept through it (I know bad joke) I awake to see you and Heather and I am sooo grateful that I woke up. I am so happy to see you, I know who you are, I can move my arms and legs, my head hurts.
Jan 11-16 I'm in ICU Step Down, you are there to feed me, walk me to the bathroom, even to bathe me. You are love in it's purest form. I know this at the time but can't express it. Everything is very confusing and I just don't feel like myself. I'm tired but you push me, I hate that. Nothing seems normal, you are there to help me through it.
Jan 17~you bring me home, I can barely stand, I can't see right and I still can't figure out how to get the food to my mouth. You are there by my side, never leaving, always helping, always loving, forever patient. I'm so glad to be home yet don't understand how in this state I could be.
Feb 16~Recovery is cruising along I can do this. WOW look at me go. I just can't see right and I keep falling over, well this is starting to suck!!!
March 16~Recovery continues, you get me a tablet for my birthday so I can make everything REALLY big on it. The Internet is now mine...muuhwaaahhhaha (evil laugh)
April 16~ We are experts at Doctor appointments. I have so many Doctors and you take me to every appointment. Asking all the right questions as I stumble my way through this.
May 16~I'm done, I don't want to play this game anymore. I'm tired of the stall, hurry up last leg of this recovery. I just want to get back to work. I miss my job, my co-workers, my friends. I miss my Independence. I become angry, this is NOT how I saw this happening. Find out my eye improved a little, Hooray!! Find out I have 25 radiation treatments in my future, Horrr...no..no there's no hooray, there is just an overwhelming feeling of this is not done yet. You are amazing, again the right questions at the right time to the right people. You do your best to joke through this new information to try and lighten the mood. I'm having none of it, I'm angry and it shows. You are amazingly patient with me, I don't know how you do it. There is not a day that passes that I don't thank God for you, you need to know that.
June 16~onward and upward, we trudge on, I'm getting some energy back, I over do it, you tell me this, as does my physio. I hate it when you are right. With grace you never tell me "I told you so". How are you so patient with me? You always say you are the luckiest man in the world. I say I'm the luckiest women in the world and know that God forbid, if the tables were ever turned I would do all the same for you. YOU are my soul mate. We truly know what the other needs or wants. I am blessed to have you in my life.
July 16th~One year from the day you took me out for Thai food. Never in a million years did I ever think I could love someone as much as I love you. T Jay, only you will understand my "mush puddle" love for you. You are LOVE.
Sunday, May 12, 2013
The Unbreakable Bond of Motherhood
Mother's Day, the day of reflection. At least it is for me. I like to spend Mother's Day going over the last 12 years in my head. Memories of ewwy gooey paint, play-dough, first Christmas Concerts and in our family's case, the IWK Hospital. Being a mom to a child/children who is/where sick is no different then any other mom, we just have more grey hair.
My first born is a Clomid baby (fertility drugs), and if you had to do any kind of fertility treatments you will understand the exhausting care and planning that is involved in trying to conceive I spent a good part of my 20's in anger over women who just "happened" to get pregnant or called it a "mistake" My infertility took over my life, a devastating miscarriage at 16 weeks, then finally on Christmas Eve Day I found out I was pregnant again. A pregnancy that was not routine by any means, led to a healthy baby girl weighing 7lbs 5oz. Everything was fine until she was 2 days old when she had a terrible allergic reaction to the diapers in the hospital, it was like someone poured hot water all over her diaper area. Easy fix they told me, just change the diaper brand. That reaction was just the start of years of trips to the ER, countless specialist, x-rays, blood test and antibiotics.
Haley was diagnosed with a condition called Hypogammaglobulinemia (THI) at the age of 1. This is one of the better immune deficiencies you can have, their immune system kicks in around the age of 2 or 3 and they tend to live normal healthy lives. When Haley was 2 years plus a week she welcomed a baby brother into her life, he was not a Clomid baby, therefore, he was free :) Zack, a chubby 7lb 4oz little guy was brought into our life at a point when Haley was constantly sick. Being on Mat. leave certainly did help to limit the amount of germs she was exposed to but it was still difficult. After returning to work for about 2 months it was obvious that I had more sick calls then work time and quitting my job to care for my children was my only option. I then opened my home to friend's children and became a day time Mommy to a handful of kids as their parents worked. It was perfect, it allowed me to be home with both children, especially her, when she needed me most. Some of my best memories are of being a mom and a "day time mommy"
As much as Haley should have been getting better according to her Doctors, simply due to age and immune system maturity, she wasn't. Zack was not without his own illness as he would pick up a lot of what she had. He however, suffered from his own problem, digestive issues. Why do they both have digestive problems? This is when I began to really do my research. I swear I'm a MD, I just don't have the paper to prove it...self taught all the way. I became fascinated with how the immune system worked, why are they doing this blood test, why does she get the same repeated illness time and time again? You have to understand Haley was sick ALL THE TIME, ear infection, lung infections, Pneumonia, chronic bronchitis, bad gastrointestinal issues, measles, E coli, roseola so many times I'd lost count, all of this before the age of three. She had an Immunologist Dr Izzukutz at the IWK and still does to this day, a Pediatrician, Dr Blake who was amazing and Haley knew who at the lab she wanted taking her blood and who she didn't. All of this time spent in hospital and researching of blood types and cells led me to return to school to became a Phlebotomist.
While studying one night after a very long day of Zack not feeling well because of his tummy and she was starting to get sick, spiking a high fever, we had a horrible scare. Haley and Zack's dad (Todd, my ex husband) works on the oil rigs and had just returned home from a long stint away. As we tried to settle her, Zack, at the age of 3 was insistent that he needed to use the toilet. From her room to the bathroom to her room I hear, "Mommy the poop won't come out" and there is my son sitting on the toilet with his bowels hanging out of his body. I panicked, as Todd called the IWK and after EVERYTHING I had been through with Haley, I had no idea what to do. Upon instruction to bring him into EMERG by car since he was not bleeding I did what I was told. It was the first time I had to choose which sick kid to be with, I never want to have to make that choice ever again. I was told in EMERG that he had a prolapsed bowel, off to the IWK the following day to see a bowel specialist and testing for CF. Apparently this can show up in patients with Cystic Fibrosis. I was so thankful that the sweat test (to test for CF) came back negative but now I was taking Zack to regular IWK appointments to see Dr. Blake and a bowel specialist. He was now taking a drug called Peg 3350, truly a miracle drug for his issues. I felt between the two of them we spent more time at the IWK, for appointments, then we did at home.
Through all this I continued to study, caring for my kids pretty much on my own due to my Ex's work and at this point my marriage fell apart. I have absolutely no help of any kind here in Nova Scotia as all my biological family live in Quebec and Ontario. (I do have a foster family here in Nova Scotia but we don't see much of one another) I was on my own so I finished school and the kids and I moved to the city. I very quickly created a network of friends who to this day I call my family and would bend over backwards to help them. I started working at our adult hospital on a casual basis and my fascination and amazement at how all that is wrong with the body can almost always be found through a blood test was born. I love my job and miss it everyday...now that I'm off.
There were many sick calls at my new job as Haley's illnesses continued. However, now there seemed to be a gap in between them, finally small breaks where she was healthy. In 2009 the H1N1 scare hit Nova Scotia. As a health care worker we were given the vaccine early to prevent us from getting sick. I remember saying to a co-worker I have to get this vaccine, if I bring this home to Haley it will kill her. And kill her it almost did. She fell ill on a Thursday night, I will never forget this. Like any other time she awoke with a high fever she would come and crawl into bed with me but this time she was in horrible pain, complaining that her back hurt. Through every chest infection she's had I've never heard this child complain of pain. By Sunday we had been admitted to hospital with the confirmation through nasal fluid testing that she did indeed have H1N1. 7 Days later we were in PICU having a chest tube inserted, her plural cavity on the left side had completely filled with fluid. There was no air entry in her left lung, her kidneys were not working properly, blood work every 4 hours, pneumonia from the H1N1, then bacterial pneumonia on top of that, and a constant fever, that by the end of this horrific illness, lasted over 14 days. It was by far the scariest time in my life, I was helpless and at the mercy of health care professional who were learning as they went along due to the unknown characteristic of this illness. Haley's Dad took time off work to be with Zack and us. He would drop Zack off at school and come into the hospital for the day until it was time to pick him up again. He would bring me food and sit with her while I used the "family" shower down the hall. I felt even being away from her for that 20 minutes was too long. Thank God Todd's work was very understanding giving him the time off he needed. After two weeks in hospital she pulled through but, it took a couple of months of recovery before she was back to her normal self. During this time I can't even begin to say enough about my amazing co-workers, my employer, my friends and family who helped us get though it.
We've had the "normal Haley illness" sudden onset of fevers, chest infections, sinus etc since then but nothing as scary as H1N1. She has annual check ups with her Immunologist, who confirm year after year that her immune system is just not the same as others. She's a fighter like her mom and oddly enough she has only been really sick 4 or 5 times in the past 12 months. Like I've said in a past blog, one at a time in this house.
I'm Happy to report that other then a tonsillectomy from too many strep throats when Zack was 7, he is a healthy 10 year old now.
I'm blessed on this mothers day to be able to reflect back on all my hard work. I have two AMAZING kids who "get it" because they've had to. They are not whinny or sulky, they are caring and kind all because life threw them some curve balls. They have a Mother who through all of this crazy madness never gave up, or gave in. I've taught them to embrace it all and keep going. Life is not easy, it's not supposed to be, but together we have proven that we can get through anything. Now that the tables have turned somewhat and I'm the sick one, I have no doubt in my mind they will be by my side every step of the way, we have created an unbreakable bond.
My first born is a Clomid baby (fertility drugs), and if you had to do any kind of fertility treatments you will understand the exhausting care and planning that is involved in trying to conceive I spent a good part of my 20's in anger over women who just "happened" to get pregnant or called it a "mistake" My infertility took over my life, a devastating miscarriage at 16 weeks, then finally on Christmas Eve Day I found out I was pregnant again. A pregnancy that was not routine by any means, led to a healthy baby girl weighing 7lbs 5oz. Everything was fine until she was 2 days old when she had a terrible allergic reaction to the diapers in the hospital, it was like someone poured hot water all over her diaper area. Easy fix they told me, just change the diaper brand. That reaction was just the start of years of trips to the ER, countless specialist, x-rays, blood test and antibiotics.
Haley was diagnosed with a condition called Hypogammaglobulinemia (THI) at the age of 1. This is one of the better immune deficiencies you can have, their immune system kicks in around the age of 2 or 3 and they tend to live normal healthy lives. When Haley was 2 years plus a week she welcomed a baby brother into her life, he was not a Clomid baby, therefore, he was free :) Zack, a chubby 7lb 4oz little guy was brought into our life at a point when Haley was constantly sick. Being on Mat. leave certainly did help to limit the amount of germs she was exposed to but it was still difficult. After returning to work for about 2 months it was obvious that I had more sick calls then work time and quitting my job to care for my children was my only option. I then opened my home to friend's children and became a day time Mommy to a handful of kids as their parents worked. It was perfect, it allowed me to be home with both children, especially her, when she needed me most. Some of my best memories are of being a mom and a "day time mommy"
As much as Haley should have been getting better according to her Doctors, simply due to age and immune system maturity, she wasn't. Zack was not without his own illness as he would pick up a lot of what she had. He however, suffered from his own problem, digestive issues. Why do they both have digestive problems? This is when I began to really do my research. I swear I'm a MD, I just don't have the paper to prove it...self taught all the way. I became fascinated with how the immune system worked, why are they doing this blood test, why does she get the same repeated illness time and time again? You have to understand Haley was sick ALL THE TIME, ear infection, lung infections, Pneumonia, chronic bronchitis, bad gastrointestinal issues, measles, E coli, roseola so many times I'd lost count, all of this before the age of three. She had an Immunologist Dr Izzukutz at the IWK and still does to this day, a Pediatrician, Dr Blake who was amazing and Haley knew who at the lab she wanted taking her blood and who she didn't. All of this time spent in hospital and researching of blood types and cells led me to return to school to became a Phlebotomist.
While studying one night after a very long day of Zack not feeling well because of his tummy and she was starting to get sick, spiking a high fever, we had a horrible scare. Haley and Zack's dad (Todd, my ex husband) works on the oil rigs and had just returned home from a long stint away. As we tried to settle her, Zack, at the age of 3 was insistent that he needed to use the toilet. From her room to the bathroom to her room I hear, "Mommy the poop won't come out" and there is my son sitting on the toilet with his bowels hanging out of his body. I panicked, as Todd called the IWK and after EVERYTHING I had been through with Haley, I had no idea what to do. Upon instruction to bring him into EMERG by car since he was not bleeding I did what I was told. It was the first time I had to choose which sick kid to be with, I never want to have to make that choice ever again. I was told in EMERG that he had a prolapsed bowel, off to the IWK the following day to see a bowel specialist and testing for CF. Apparently this can show up in patients with Cystic Fibrosis. I was so thankful that the sweat test (to test for CF) came back negative but now I was taking Zack to regular IWK appointments to see Dr. Blake and a bowel specialist. He was now taking a drug called Peg 3350, truly a miracle drug for his issues. I felt between the two of them we spent more time at the IWK, for appointments, then we did at home.
Through all this I continued to study, caring for my kids pretty much on my own due to my Ex's work and at this point my marriage fell apart. I have absolutely no help of any kind here in Nova Scotia as all my biological family live in Quebec and Ontario. (I do have a foster family here in Nova Scotia but we don't see much of one another) I was on my own so I finished school and the kids and I moved to the city. I very quickly created a network of friends who to this day I call my family and would bend over backwards to help them. I started working at our adult hospital on a casual basis and my fascination and amazement at how all that is wrong with the body can almost always be found through a blood test was born. I love my job and miss it everyday...now that I'm off.
There were many sick calls at my new job as Haley's illnesses continued. However, now there seemed to be a gap in between them, finally small breaks where she was healthy. In 2009 the H1N1 scare hit Nova Scotia. As a health care worker we were given the vaccine early to prevent us from getting sick. I remember saying to a co-worker I have to get this vaccine, if I bring this home to Haley it will kill her. And kill her it almost did. She fell ill on a Thursday night, I will never forget this. Like any other time she awoke with a high fever she would come and crawl into bed with me but this time she was in horrible pain, complaining that her back hurt. Through every chest infection she's had I've never heard this child complain of pain. By Sunday we had been admitted to hospital with the confirmation through nasal fluid testing that she did indeed have H1N1. 7 Days later we were in PICU having a chest tube inserted, her plural cavity on the left side had completely filled with fluid. There was no air entry in her left lung, her kidneys were not working properly, blood work every 4 hours, pneumonia from the H1N1, then bacterial pneumonia on top of that, and a constant fever, that by the end of this horrific illness, lasted over 14 days. It was by far the scariest time in my life, I was helpless and at the mercy of health care professional who were learning as they went along due to the unknown characteristic of this illness. Haley's Dad took time off work to be with Zack and us. He would drop Zack off at school and come into the hospital for the day until it was time to pick him up again. He would bring me food and sit with her while I used the "family" shower down the hall. I felt even being away from her for that 20 minutes was too long. Thank God Todd's work was very understanding giving him the time off he needed. After two weeks in hospital she pulled through but, it took a couple of months of recovery before she was back to her normal self. During this time I can't even begin to say enough about my amazing co-workers, my employer, my friends and family who helped us get though it.
We've had the "normal Haley illness" sudden onset of fevers, chest infections, sinus etc since then but nothing as scary as H1N1. She has annual check ups with her Immunologist, who confirm year after year that her immune system is just not the same as others. She's a fighter like her mom and oddly enough she has only been really sick 4 or 5 times in the past 12 months. Like I've said in a past blog, one at a time in this house.
I'm Happy to report that other then a tonsillectomy from too many strep throats when Zack was 7, he is a healthy 10 year old now.
I'm blessed on this mothers day to be able to reflect back on all my hard work. I have two AMAZING kids who "get it" because they've had to. They are not whinny or sulky, they are caring and kind all because life threw them some curve balls. They have a Mother who through all of this crazy madness never gave up, or gave in. I've taught them to embrace it all and keep going. Life is not easy, it's not supposed to be, but together we have proven that we can get through anything. Now that the tables have turned somewhat and I'm the sick one, I have no doubt in my mind they will be by my side every step of the way, we have created an unbreakable bond.
Friday, May 3, 2013
Have Tumour...Will Travel
We're back and Cuba for Christmas was fantastic. Certainly well worth all the hard work it took to save for our awesome vacation. Seeing Cuba through your kids eyes is something I will never forget. They were in awe of the culture and people just like I was last year. I couldn't be more proud of their grace and kindness, I am one proud momma.
Having left the day after getting my MRI results I vowed not to think about anything she had to say to me. Every time I caught myself wondering or asking myself the "what ifs" I'd turn to something of beauty and thanked God for the opportunity to be there to see it. Of course I had my moments to myself on the beach or in the pool but I think I'm allowed those every once in a while.
The MRI was no surprise really, Honeycomb is still where he was and bubblegum looks like someone popped him. Just a flat piece of gum stuck in my brain, she referred to that piece of gum as a "carpet", I hate carpet!!! So I was expecting to her ask how things were going, like physio and my eye sight and she did but then the conversation very quickly turned to options. Options? what does that mean, what options? I thought surgery was the option and then you recovered, got better, went back to work. Hmmm, not the case. She said that it made sense to think about radiation while the tumour is small, but of course it is my decision. She would speak with her colleague about seeing me and providing me with more information. As we left the office and began our vacation, T Jay and I thought I guess we'll see what they say down the road, it's only information after all. Well after opening the mail the day after our return "down the road" is only three weeks away. Geesh, I thought that's a short road, nothing like being thrown right back into it. As I once again spent an hour or so processing new information in my inward withdrawn manner I thought suck it up. Me, my family and my tumour just spent an amazing week South, that was my break. And although I came back to full on appointments again how can you not count your blessings for what matters most, spending time with family. Yes the vacation we had was not 100% of what I had in mind when I originally booked it before my diagnoses, it was better!!! Watching them play in the surf, extending kindness to others and just hanging out. It's going to take a lot more then a brain tumour to stop me from enjoying that.
Having left the day after getting my MRI results I vowed not to think about anything she had to say to me. Every time I caught myself wondering or asking myself the "what ifs" I'd turn to something of beauty and thanked God for the opportunity to be there to see it. Of course I had my moments to myself on the beach or in the pool but I think I'm allowed those every once in a while.
The MRI was no surprise really, Honeycomb is still where he was and bubblegum looks like someone popped him. Just a flat piece of gum stuck in my brain, she referred to that piece of gum as a "carpet", I hate carpet!!! So I was expecting to her ask how things were going, like physio and my eye sight and she did but then the conversation very quickly turned to options. Options? what does that mean, what options? I thought surgery was the option and then you recovered, got better, went back to work. Hmmm, not the case. She said that it made sense to think about radiation while the tumour is small, but of course it is my decision. She would speak with her colleague about seeing me and providing me with more information. As we left the office and began our vacation, T Jay and I thought I guess we'll see what they say down the road, it's only information after all. Well after opening the mail the day after our return "down the road" is only three weeks away. Geesh, I thought that's a short road, nothing like being thrown right back into it. As I once again spent an hour or so processing new information in my inward withdrawn manner I thought suck it up. Me, my family and my tumour just spent an amazing week South, that was my break. And although I came back to full on appointments again how can you not count your blessings for what matters most, spending time with family. Yes the vacation we had was not 100% of what I had in mind when I originally booked it before my diagnoses, it was better!!! Watching them play in the surf, extending kindness to others and just hanging out. It's going to take a lot more then a brain tumour to stop me from enjoying that.
Sunday, April 14, 2013
Merry Christmas
Last March I had the amazing experience of bringing in my 40th birthday on a roof top in Havana Cuba. I fell in love with the culture, the people and the history. This was my first vacation ever and now I understand why people do it year after year!!! I jammed everything I could possibly experience in 7 days thinking I would never get the chance to go back being a single mom and all. (at the time) All I could think about when I was there was this would be so cool for my kids to see and what an awesome reality check it would be. They certainly are not spoiled by any means but we do live in Canada after all...we are all spoiled here in comparison.
Returning home I suddenly realized that I could take my kids, it would just take some saving and planning. I spoke with my family Dr about taking them as my daughter has an immune deficiency, he had no problem with it, made some suggestions and then I went into major planning mode.
I went to my bank and opened a savings account with the sad amount of $50.00 knowing that I only had three car payments left. My plan was to take the car payment money that I was use to paying and dump it into my savings account. I knew I needed 9 months of car payments to get the three of us to Cuba. I made cut backs in other areas, got rid of cable TV, watched what we bought at the grocery store, little things added up. Three problems presented themselves, there was no way I could afford Christmas and Cuba and 9 months took us to April 2013. That's when Cuba for Christmas was born, what an amazing gift of culture that would be. My plan was to give my kids new suitcases with sunny south things, like bathing suits, sunglasses and a note saying we were going to Cuba. I started collecting these items in the summer, with the closing out of Zellers, it was a God send on my budget.
I was busting at the seams with excitement when I booked the trip September 27th turning into an organizational freak, this was going to be such an amazing adventure for the four of us. I was feeling awesome about my life, I met the man of my dreams, together creating a Christmas my kids would never forget. Six days later I was diagnosed with my brain tumour and the wind blew out of my sails. Suddenly, my life was about MRI's and surgery dates not the sunny south. Why? Why do bad things always happen to good people? For the first time in my life my mental health was in question as I slipped into a depression. I went from the person who can do anything to the person who just couldn't.
Surgery booked, surgery cancelled, surgery maybe next week, maybe the week after, all the while I'm sinking both mentally and physically and I know it. My mind is spinning, do I go ahead and give them the trip, all I can think about is the "what ifs" I seek help, and with to many light bulb moments to count, I'm back mentally. Although I'm feeling the physical affects I push on realizing that if this trip is meant to happen, God will allow it and that's where I place my trust.
December 25 arrives, still no surgery and Cuba for Christmas is given. My kids are as excited as a 12 and 10 year old can be having to wait 4 months to get their present. We read the reviews, look at the pictures and get as excited as we can. As soon as the Christmas break was over the phone rings, my surgery was booked for January 11th. Hooray I think, plenty of time to get this done and be my old self again...wooo hoooo!!!
Well brain surgery ain't all it's cracked up to be, I can tell you that!!!! It's been a long recovery and 13 weeks later, I'm just started to feel myself again. As Cuba for Christmas is fast approaching I am blown away that not only was I able to organize it in all this chaos but timing IS everything. Although this trip might not be as adventurous as it would have been as a non brain tumour survivor it will be everything it is meant to be, time spent with family. I'm so blessed to be given this opportunity to have this experience with three people I love so dearly. One week with no Doctors, no physio, no appointments at all and NO thinking about the "what if's" It's a tumour free week that we all deserve. Merry Christmas to my family
Returning home I suddenly realized that I could take my kids, it would just take some saving and planning. I spoke with my family Dr about taking them as my daughter has an immune deficiency, he had no problem with it, made some suggestions and then I went into major planning mode.
I went to my bank and opened a savings account with the sad amount of $50.00 knowing that I only had three car payments left. My plan was to take the car payment money that I was use to paying and dump it into my savings account. I knew I needed 9 months of car payments to get the three of us to Cuba. I made cut backs in other areas, got rid of cable TV, watched what we bought at the grocery store, little things added up. Three problems presented themselves, there was no way I could afford Christmas and Cuba and 9 months took us to April 2013. That's when Cuba for Christmas was born, what an amazing gift of culture that would be. My plan was to give my kids new suitcases with sunny south things, like bathing suits, sunglasses and a note saying we were going to Cuba. I started collecting these items in the summer, with the closing out of Zellers, it was a God send on my budget.
I was busting at the seams with excitement when I booked the trip September 27th turning into an organizational freak, this was going to be such an amazing adventure for the four of us. I was feeling awesome about my life, I met the man of my dreams, together creating a Christmas my kids would never forget. Six days later I was diagnosed with my brain tumour and the wind blew out of my sails. Suddenly, my life was about MRI's and surgery dates not the sunny south. Why? Why do bad things always happen to good people? For the first time in my life my mental health was in question as I slipped into a depression. I went from the person who can do anything to the person who just couldn't.
Surgery booked, surgery cancelled, surgery maybe next week, maybe the week after, all the while I'm sinking both mentally and physically and I know it. My mind is spinning, do I go ahead and give them the trip, all I can think about is the "what ifs" I seek help, and with to many light bulb moments to count, I'm back mentally. Although I'm feeling the physical affects I push on realizing that if this trip is meant to happen, God will allow it and that's where I place my trust.
December 25 arrives, still no surgery and Cuba for Christmas is given. My kids are as excited as a 12 and 10 year old can be having to wait 4 months to get their present. We read the reviews, look at the pictures and get as excited as we can. As soon as the Christmas break was over the phone rings, my surgery was booked for January 11th. Hooray I think, plenty of time to get this done and be my old self again...wooo hoooo!!!
Well brain surgery ain't all it's cracked up to be, I can tell you that!!!! It's been a long recovery and 13 weeks later, I'm just started to feel myself again. As Cuba for Christmas is fast approaching I am blown away that not only was I able to organize it in all this chaos but timing IS everything. Although this trip might not be as adventurous as it would have been as a non brain tumour survivor it will be everything it is meant to be, time spent with family. I'm so blessed to be given this opportunity to have this experience with three people I love so dearly. One week with no Doctors, no physio, no appointments at all and NO thinking about the "what if's" It's a tumour free week that we all deserve. Merry Christmas to my family
Tuesday, March 19, 2013
10 Awesome things about having a brain tumor
I know what you're thinking...what in the heck could be awesome about having a brain tumor...well here's what I think:
1. I know that my better half T Jay is my life long partner. Now it really didn't take a brain tumor to bring that out but when you go through 7 month of hell and you have only been together 8, chances are good he's sticking around. I couldn't love someone more, I am blessed.
2. Speaking of blessed...you become just that, blessed. I have the most amazing friends in the world. I have created an unbreakable chain and bond with people who have become my family...brain tumors bring out the best in people.
3. I got to meet a Neurosurgeon...it's like meeting an astronaut..well kind of, but not really. Actually Neurosurgeons are at the top of the hospital food chain so to speak and I have the best one. (I actually work at the hospital that I had my surgery at so I've met a Neurosurgeon or two in my time, but I've never had one inside my head before...so it counts)
4. I have the best excuse for all the stupid things I do. "Oh I put the wrong pin number in...that's because I have a brain tumor" (I use that one a lot actually)...I mispronounce a word or used it completely wrong in a sentence...it's because I have a brain tumor. I ran into a wall, yup it's because I have a brain tumor...see how this works for me. I no longer have to use the "Well it's because I'm blond" anymore...mov'n on to bigger and better excuses!!!!!
5. I have a team of Doctors with all kinds of different specialties working to make me better. How cool is that?
6. I live in Canada, where my taxes and my fellow Canadian taxes paid for my surgery and subsequent Doctors appointments. We have each other's backs in this Country and that really IS awesome.
7. I can't feel the right side my head of face (more from the brain surgery then the brain tumor itself but it still counts, cause it's my blog and I say so......anyway I've bumped my head twice now, actually bumped in the wrong word...smacked really, and I didn't feel it, that's awesome in a weird way.
8. I have a lovely collection of wine in my wine rack, can't drink it due to the meds, so it looks pretty in my kitchen.
9. We get to participate in our first Brain Tumour Foundation of Canada Spring Sprint as a family. Love raising money for good causes, and this is one of them...27 Canadians are diagnosed EVERY DAY with a brain tumor, that's more then one an hour...think about it...crazy eh? So of course it would only be fitting to let you link to my fundraising page here ..Recovery Roadsters, how awesome are we!!!
10. The most awesome of all...my children have learned that even Moms break sometimes. That it's ok to see someone you love unwell, and as hard as that has been it's life. The lesson is to fight and fight hard, stay strong and positive, and always be yourself. If it's a bad day, it's ok to say that, cause the good days need to be cherished.
1. I know that my better half T Jay is my life long partner. Now it really didn't take a brain tumor to bring that out but when you go through 7 month of hell and you have only been together 8, chances are good he's sticking around. I couldn't love someone more, I am blessed.
2. Speaking of blessed...you become just that, blessed. I have the most amazing friends in the world. I have created an unbreakable chain and bond with people who have become my family...brain tumors bring out the best in people.
3. I got to meet a Neurosurgeon...it's like meeting an astronaut..well kind of, but not really. Actually Neurosurgeons are at the top of the hospital food chain so to speak and I have the best one. (I actually work at the hospital that I had my surgery at so I've met a Neurosurgeon or two in my time, but I've never had one inside my head before...so it counts)
4. I have the best excuse for all the stupid things I do. "Oh I put the wrong pin number in...that's because I have a brain tumor" (I use that one a lot actually)...I mispronounce a word or used it completely wrong in a sentence...it's because I have a brain tumor. I ran into a wall, yup it's because I have a brain tumor...see how this works for me. I no longer have to use the "Well it's because I'm blond" anymore...mov'n on to bigger and better excuses!!!!!
5. I have a team of Doctors with all kinds of different specialties working to make me better. How cool is that?
6. I live in Canada, where my taxes and my fellow Canadian taxes paid for my surgery and subsequent Doctors appointments. We have each other's backs in this Country and that really IS awesome.
7. I can't feel the right side my head of face (more from the brain surgery then the brain tumor itself but it still counts, cause it's my blog and I say so......anyway I've bumped my head twice now, actually bumped in the wrong word...smacked really, and I didn't feel it, that's awesome in a weird way.
8. I have a lovely collection of wine in my wine rack, can't drink it due to the meds, so it looks pretty in my kitchen.
9. We get to participate in our first Brain Tumour Foundation of Canada Spring Sprint as a family. Love raising money for good causes, and this is one of them...27 Canadians are diagnosed EVERY DAY with a brain tumor, that's more then one an hour...think about it...crazy eh? So of course it would only be fitting to let you link to my fundraising page here ..Recovery Roadsters, how awesome are we!!!
10. The most awesome of all...my children have learned that even Moms break sometimes. That it's ok to see someone you love unwell, and as hard as that has been it's life. The lesson is to fight and fight hard, stay strong and positive, and always be yourself. If it's a bad day, it's ok to say that, cause the good days need to be cherished.
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