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Meet Amanda

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I would like to introduce the community to another one of our amazing members, Amanda! She is better known on our community as Amanda26. Please read more about her family's journey of love and life below. All the best to Kyle as he continues to surpass those milestones. 

I am the caregiver/partner in crime to my wonderful husband Kyle, who is going on almost 2 years stable post-treatment for a brain tumor – Glioblastoma.  We are currently living out our dreams, one at a time, while the going is still good!  We live in south-east Ontario with our 7 year old son.  Life is so normal right now it’s hard to believe what was, and what is eventually to come.  We are so thankful for this time of peace and happiness!  Here’s how we got to where we are:
 
One spring day in April 2014 I wandered inside to find my husband Kyle so we could head to the grocery store.  I knew he was in the bathroom and didn’t want to disturb him but it had been awhile, so I called for him.  As I approached the washroom I heard a funny banging noise so I opened the door and he was having a grand mal seizure.  He had bitten his tongue and cheek and there was blood sprayed everywhere from his convulsions.  I ran outside and called my neighbor, a PSW – her and her husband sprinted from their back garden and she rushed to his side while I called an ambulance.  I was so panicked I couldn’t even tell the operator my address and had to pass the phone off.  Kyle had no health problems to this point and while I recognized the seizure, I wasn’t’ so sure about all the blood – it was terrifying.  I rode with Kyle in the ambulance and left our 3 year old with the same neighbors who rushed over.   

Preliminary tests showed all was fine.  It took a few hours for him to emerge from the post-ichtal state, but after a few hours he was discharged with a new prescription for anti-seizure drugs and an MRI appointment in 2 days’ time.  We also left with the news that Kyle had now lost his license for an indefinite period of time due to the seizure.   This was particularly devastating to Kyle, as it was an instant loss of independence and in his eyes, his worth, as he could no longer help the household by running errands and driving our son to daycare, etc.  He was completely devastated by this and it would be 18 months before it was re-instated (2 days before Christmas at that!  Talk about a happy man! ).    
 
After the MRI we were asked to hang around.  When we asked why, the tech said with emergent cases like Kyle this is standard and we really thought nothing of it, just anxious to get the “all-clear” and move on living to learn with possible epilepsy.   I still remember the exact tone and inflection in the doctor’s voice as he said “I have some bad news about your MRI…”.  He paused to let it sink in.  I have never felt so out-of-body as I did in that moment.  I immediately asked if it was cancer and all he could say was he didn’t know, but he has already spoken to a surgeon, and they will call with an appointment for the next week.  They let us go home.  I thought, if it was truly serious they wouldn’t let us leave, he would need immediate treatment… right?
 
A 4 hour surgery followed in 4 weeks’ time.  He had rehearsed a joke for the OR nurses while they prepared him and they laughed, saying most people are so terrified they sometimes can’t even look around the room!   We had a code word from a rather inappropriately funny inside joke that was to be his first word to me when he woke up. As I approached him afterwards – all 6’3 of him sprawled in bed with his head wrapped up and lines and tubes everywhere, he opened one eye and said the joke word and I laughed and cried tears of relief – he was in there!  The nurse probably thought we were nuts!
 
They advised us recovery takes 3-5 days and he was determined to make it in 3.  He was up and walking on day 2, and all the pain was under control and he was doing great by day 3 so home we went.  He did really well until day 5 when he started to have stroke like symptoms in the evening – his arm started to tingle, he began drooling and slurring his speech, and then acting really strange.  I called my father in law to come and stay with our sleeping son and drove him to the hospital.  He was seen right away and a CT was done which ruled out a bleed, but his symptoms were worsening, and he also began to get targeted and full body convulsions.  We eventually ended up transferred to another hospital where it was confirmed he was having a prolonged focal seizure and he was started on new medication to stop it, as the old meds obviously weren’t working.  He seized for 18-20 hours total and spent 5 days in the ICU watching to make sure they were under control.    

It was while he was recovering from the seizure that his surgeon popped in to see us and informed us his tumor would need “extra treatment” and the “C” word was official.  He said before we left oncology would come and see us, and that preliminary results showed it was a grade 3 astrocytoma.  When oncology finally made their way up they asked us if we knew the pathology and we said yes and explained.  He looked confused, left the room, and returned with the printed official pathology report upgrading our terror and his tumor to a grade 4 – the worst of the worst.  It was a dark day.
He got the standard treatment for Glioblastoma – 30 radiation treatments with concurrent low dose temozolomide.  A break, and then 12 months of high dose temozolomide.  He was stable after 12 months and they said the drug had reached its maximum efficacy after 12 months so now we enter the watch and wait phase.  That was July of 2015.

In early 2015, we decided to take the plunge and buy a cottage, which had been our lifelong dream.  We found our lovely spot listed on a Monday, went to see it the following Saturday and had an offer in that afternoon.  It was all hashed out by the following week.  It was bittersweet – we had fast-tracked our dream for crappy reasons but the cottage gives us that place to just be together as a family and enjoy life.  We spend all our available time there from spring until fall.

The cottage was priority #1 in terms of things to fufill.  Since then, we have taken 3 Caribbean vacations – 2 alone and one just this past Christmas with our son.  We have another planned for October for the 3 of us, we are so excited that our son is finally old enough to enjoy those kinds of vacations!  Kyle had always wanted a diesel truck and thought that would never happen when he lost his license, so he bought one a few months back and smiles like a goofy kid every time he drives it.  He joined the Canadian Ski Patrol (which is voluntary) and after completing their intense first aid course, patrolled at our local hill at least once a week all winter.
 
We have a crazy and sometimes twisted sense of humor which can sometimes come off as blunt or even crass to some people – but it gets us by. In early August of 2015, we had a “you-should-have-been-dead-by-now” party at our cottage.  It was the 3 of us, and a couple family members.  Our son set the table with Paw Patrol plates and napkins left over from his birthday and we ate and drank and surpassed milestone #1 - the median survival of 14.8 months from diagnosis.  He has continued to surpass milestones since.

From a wife and care-giver’s point of view, this has been the most bizarre and difficult way to learn about myself as a person.  I hadn’t experienced any loss or trauma aside from losing a family pet, so I had no prior coping skills.  I learned that I retreat into a shell when I am anxious and stressed out, I don’t ask for help easily, and I wasn’t nearly as nice to myself as I could have been for the first while.  I also developed a tougher skin than I thought I was capable of, worked on self-soothing techniques for when the stress gets high, and developed a deeper level of gratitude for the small stuff. 

Self-care is so, so important.  I was becoming so overwhelmed that I was not “there” for Kyle – physically yes, but mentally I was checking out, I was full.  I was of the mind that he didn’t get a break from having cancer so why should I get a break from caring for him – not a healthy way to think.   I spoke to a social worker at the cancer center where Kyle was treated and though I only went once, it helped tremendously.  There are dark, unpleasant things in your mind when the life of someone you love so much is going to be drastically shorter than yours and it just felt good to say those things to someone completely impartial.  We saw a social worker together and he wrote some insightful sayings on a chart which we took home and framed.  One was “Don’t look back in anger nor ahead in fear, but around, in awareness.”  This helps to ground us when looking into the unknown future is too much to bear.  I made time once a week or so to have lunch with a work friend while I was on short term disability driving Kyle to his radiation appointments.  I made the time 4-5 times a week to go to the gym for an hour – something I had already been doing for years but was such a necessary therapy!  Once I took the time to sort myself out mentally, I had so much more to give to both Kyle and our son.  
 
We live in 6 month chunks of time – the time between MRI’s.  Those times are stressful and tough as we know things won’t continue like this indefinitely.  There have been a handful of long term survivors of this disease so we are realistic, but that doesn’t mean we aren’t still hopeful and optimistic!
 
Thanks for reading our story :)
Amanda  
 
Thank you for taking the time to share your inspiring story with us Amanda. If others are interested in being featured in our Meet your Neighbour post please contact Lacey_adminCCS.




Comments

Amanda, you and your family have certainly decided to live life to the fullest even through difficult times. I applaud you both for your courage and tenacity of going full steam ahead, we can all learn from you. You are an amazing woman and as tough as it is you have the strength to continue on and have the life you planned on. Good luck with each MRI and may all the outcomes be better than you ever expected. You will probably never know how many lives you have touched with your story and strength so thank you for sharing your journey with us all. Best of luck again..
  • Posted Fri 21 Apr 2017 09:31 AM EDT
Hi Amanda . Your courage and outlook should be a great help to others going through this (nightmare) we call cancer. Thank you for joining our community. 
  • Posted Wed 19 Apr 2017 01:08 PM EDT
Thank you both for the kind words!  It's great to share with peers who can relate to you!
Take care :)
  • Posted Sun 16 Apr 2017 02:04 PM EDT
Hi Amanda, What an amazing story of taking hold of the life you have and moving forward. It has clearly been a tough road for you guys and you are obviously strong together. I agree completely with Chevy‍ 's comment that you story will bring peace and strength to others. As we head into spring I hope you guys enjoys many more times at the cottage making memories. I can relate to your husband joy in his toy to drive.... We all need those little things.
Stay Strong and thanks for sharing.
Roll On....
  • Posted Sat 15 Apr 2017 05:31 PM EDT
Hi Amanda
​Im so sorry to see the trials and tribulations you have endured. You are a amazing woman, wife and mother. It takes a lot out of you to go through what you have. We dont know what the future holds but there is so much advancement eveyday I wish you and your husband all the Best. Thank you for sharing your story, there are so many of us going through the cruel banter of cancer. This site is great for as I say release and recieve information and story's. May your story bring peace to someone else going through the same situation.
Very Best to you's
  • Posted Thu 13 Apr 2017 12:30 PM EDT

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