Challenges and Changes Pt 1

Big changes happening very fast.

I thought that I was adaptable, that change didn’t scare me so very much, but apparently I wasn’t being honest with myself.  The last two months have been the most challenging months that I have ever had to face and the journey isn’t over.  It might never be fully over.  Here is what is happening with the Adams Family.

On August 20, 2019 I received one of the most frightening phone calls I could have received.  It was a call from the company coordinator that my husband, Dave, had been working for.  He wasn’t out on a site so at first I was just curious as to why I was being contacted.  He was at a course, what could happen at a course that required little physical activity?

The words Grand Mal Seizure were spoken and my heart practically stopped.

Never has there been any indication in the 15 years I have known this man that he would have any kind of seizure.  Small, big or anything.  While slightly overweight we were both generally healthy.

I know what is associated with this type of seizure.  I know that it is the most serious kind that exist, and was an indication of something being terribly wrong.

I was asked to get in contact with one of the people at the course asking for medical information.  Medical history, and any other symptoms that could have predicted this event.  There are and were none.  However, in the search for medical history we did find out that Epilepsy is in his family, but why would this hit now if that’s what it was.

Fast forward a day…It was not Epilepsy.  A CT Scan and two MRI’s later we are consulting with Neurologists and being told that there is a mass in the brain that needs to be biopsied and very likely removed. That this mass is in the left frontal lobe connected to where speech control and movement of the right side of the body are controlled.  That the seizures need to be controlled with medication and that we were being referred back to Calgary medical practitioners.

We were not told what precisely the mass was in his brain.  We were told that it would require more consultation and tests, lots of tests.  Blood was drawn to rule out other causes or connections.  Drugs were changed, rash reactions suck, and we were sent back to Calgary to continue the path to figuring out what this was.

The first phone call from our Family Doctor happened even before he was discharged from hospital.  The call from the Neurosurgeon came on the way home.

Big changes happening very fast.

Within the next week we knew a few things:

1. That the mass was a tumor.
2. That the mass would require some sort of treatment.
3. That Dave could no longer drive.
4. That he would continue to have symptoms of seizure until the tumor was removed
5. That our options were limited
6. Life was going to change

With so much unknown it was hard to really deal with this challenge.  Keeping our lives as normal as possible seemed the right way of working through it.  The word Cancer had been spoken, along with surgery to remove the tumor.  Our options were limited.

Option 1: do nothing and the tumor would grow and eventually Dave would die.

Option 2: have a blind biopsy completed to determine what the tumor was to inform treatment.

Option 3: aggressive surgery to remove as much of the tumor as possible, gain a sample for pathology to inform further treatment.

We chose option 3 as the seizures were getting worse and we were noticing other affects of those seizures.  The surgery comprised of the removal of a portion of Dave’s skull and testing of the areas around and within the tumor to find the best path, with least negative impact to function, to remove as much or little of the tumor as possible.  Our Surgeon was optimistic that they could make significant impact on the tumor removal, but was not so optimistic that Dave would be able to communicate normally or at all after surgery.

Why?  Well a number of more MRI’s indicated that much of his speaking function overlaid the tumor, they termed this language.  We noticed this during seizure episodes.  No more Grand Mal ones, but ones that locked up Dave’s ability to speak and communicate much of anything while they were ongoing.  It would also take a few minutes for those abilities to return after the seizure ceased.

Language can be very broad in what it encompasses and was really hard for us to wrap our heads around.  As small as, speech stutters to as large as not being able to communicate at all in a functional way.  Very scary and so unknown that we couldn’t even really plan for what was going to happen, but we tried and had some things in place for worst case scenarios.   Apps that could speak for him, hand gestures, and playing 20 questions with yes, or no questions were some of our strategies.

We saw a medical professional every week, if not multiple professionals.

Through all of this we stayed grounded in what we knew and stayed away from GOOGLE and the what if train.  We played with the children and prepared them to go back to school.  We played our own video games and settled back into our normal. Preparing the children for the next scary step of surgery.

We acknowledged the fear of the unknown and even that this could change our family dynamic completely by losing one of the participants.  Or at least I did.  What I didn’t do was acknowledge how the surgery might change how one of the adults functioned within the family.  I’ll come back to this in a bit.  Biggest thing was that we were still functioning well even with all of the scary going on.