|Kristi and Aaron live in Nanaimo, BC; this is their story
I have been in love with Aaron since I was 14 years old. Our lives took different paths after highschool though and it wasn’t until 2007 that we reconnected on Facebook and soon after fell deeply in love. In Oct ’09, one month after our fairytale wedding, I noticed things began to change.
Aaron had started to put on weight, was tired all the time, stopped working out with me or going for walks. I had to take over all the finances as he stopped paying the bills. By April ’10 he began complaining of headaches and thought his vision had changed. I brought him into the eye doctor who thought something was strange and suggested he see a specialist…that appointment was made however, for September, almost 6 months away.
I brought him into our family doctor as I thought perhaps it was a thyroid problem. All his bloodwork was fine. Our doctor believed Aaron was simply depressed, all our complaints spelt classic depression.
Aaron began to forget absolutely everything, our conversations, arguments, plans he had made etc. He wasn’t ablt to play simple board games, I actually had to ask him if he was on any drugs (knowing full well he wasn’t) but I could not figure out what was wrong. Again I took him into the doctors. Aaron thought he was fine and the doctor still believed it was depression, more blood work, they even tested for lyme disease, our doctor was grasping at anything to satisfy us but truly believed it was simply depression.
I begged for a CT scan more than once which my doctor scoffed at. Finally by August Aaron had worsened so badly that everyone finally began to notice something wasn’t right. I had us in marriage counselling now and was at the end of my whits. One afternoon Aaron woke up at 3pm and had no recollection of any of his morning at work, he finally admitted fearfully that something was wrong.
Back to the Doctors (6th week in a row) we went, this time I told my Doctor I thought it was a brain tumour and I needed a CT scan or would go to the ER myself. He told me it was definetly NOT a brain tumor and to NOT go to the ER as they are too backed up, after another week passed he organized a CT scan for November 1. This was August. I was terrified that I’d get into trouble with my doctor who had ordered me not to got to the ER but finally my gut overshadowed my fears and I brought Aaron into the ER in Prince George BC September 3rd.
The doctor listened patiently to our story, delivered us 2 CT scans along with the news that Aaron had a Craniopharyngioma tumour. It was over 5cm large, right near his pituitary gland and we would be on our way to Vanouver General Hospital right away to have it removed. 10 days later, Aaron had a 9 hour craniotomy to remove it.
Our lives were forever changed. Aaron woke up a new man. He no longer produces any hormones naturally and is on heaps of medication trying desperatly to regulate his body as best he can and figure out how to live with all their nasty side effects. He is ridiculously strong. Insanely positive. I have often said that is why God must have picked him for this path as no one I know could get through such a tragedy like this and come out all smiles like he has (He says that it’s because he could never have watched me go through all of this).
As I have slowly begun to accept that the man I fell in love with is gone forever, I have also begun to fall deeply in love with the new man that he has become. It has taken us time and huge ammounts of effort to break the “mother” “son” /caregiver relationship which can’t help but form between spouses after an ordeal like this. Every day gets better and better, and I never give up believing his life will still improve. His positive attitude has kept us both going through this.
I often ask myself where we would be if only we had found out about the tumour sooner. My goal is to gain awareness for this terrifying disease. To make the public aware of these symptoms, for people to not give up when they know in your hearts that something is not right! People need to know that you HAVE to be your own advocate, no one will do it for you, you must fight for what you believe and not give up until you have the answers that you need!
My goal is to get our GP Doctors to trust their patients and their own guts, to order tests that are needed no matter what the consequences might be! To our Optometrists, to fight harder for quicker answers when they see something out of the ordinary!! To our government and BC medical field, to help those needed get in to see our specialists sooner!!
Aaron had 7 weeks of radiation this May/June. He had an MRI on Sept 30th. We did not receive any phone calls so believed over this Thanksgiving that no news was good news and this “shadow” that had been left after surgery was now a distant memory.
Unfortunately last night I got home for work to a letter and a MRI CD that discusses 3 additional lesions have been discovered…spreading. Worsening. I am devasted with this letter and not knowing exactly what it means. Realizing that I am still in a fight with our medical system and once again Aaron has “fallen through the cracks” as our Radiologist is on a 6 month leave. No one thought to call us with these horrific results. To explain to us what’s happening and what we do now, what it all means. I am still not able to get ahold of any doctors.
Our fight will continue but we will never give up. My husband is way to strong, hopeful, determined and positive. He is my everything and I know in my heart we will both be holding hands on the bench as that “cute old couple” 40 years from now!! This fairytale is going to come true for us:) Be strong everyone in your fights with this disease!!