Blogging in B Minor

One aspect of having a brain tumor that is equally devastating is how this diagnosis impacts family members.  My wife and I, of course, had some emotional times together but I will never forget when my wife came to me a few months into this journey and told me how emotionally bankrupt she was.  She felt like she was picking up pieces of our lives together that were just falling apart.  What complicates everything in looking back is that in the beginning, everyone is focused on the patient.  Of course family and friends are there for everyone but there is undeniable concern for the loved one afflicted with this disease.  Makes sense – it’s just human nature.  However, I think what happens in time, unless there is some deliberate focus is other people in the family – wives, children, etc. can be left in the dust to one degree or another.  And don’t get me wrong – this doesn’t mean they are ignored at all, it’s just the balance of focus.

I remember about a week after my surgery, laying on the bed having the most severe seizure I had through all of this and my wife looking down at me with a look of care and compassion on her face but I also saw fear in her eyes.  I was telling her not to allow that vision of me to shape her outlook – as I was in the middle of the seizure – because I knew this was impacting her just as much as it was me.  We were going through this together always will be. 

And what about my children?  Well, my youngest was born 2 weeks after my surgery – how was that for timing and if you’ve been reading for awhile you know the story!  But my oldest – he was affected doubly.  My wife was at the end of a high risk pregnancy and on bed rest and I was preparing for surgery.   I had surgery on June 29th 2007 and my son was born July 13 2007.  All of a sudden, my son went from having two very capable parents to having two parents incapacitated.  We had a nanny and a lot of family stepping up, but what about us?  As I gained strength I spent time with him but as you know, radiation, chemo followed by more – it’s a road and once again, it’s not all about me – this touched him and impacted him and I never lost sight of that.  We made it through. 

Today we spend time together going ice skating, the movies – we have him in soccer and he actually starts into a clinic tomorrow night for 6 weeks that I will be playing in with him.  I’m still on chemo but life doesn’t stop.  You have to keep going.  I get tired sometimes but my wife understands – one day a week or so I have to come home and just lay down.  I have to go to bed early some nights but I try to spend my time on focusing on what I need to.  Today, my son calls my disease my “scar”.  He sees the craniotomy scar and that’s the extent of it.  We told him I had surgery beforehand because of headaches and so forth.  We had a good short book about doctors, nurses, the hospital, where on my body they were operating, etc. so he was well aware.  Anyway….

It’s not all about me.  I can get wrapped up into my treatment – and often times I do when I need to research.  In the beginning prior to my surgery I did a ton of research and my family understood.  I also continue to schedule film reviews and independent research as appropriate.  But I also know it’s not all about me – this disease is about all of us – everyone in my family it touches.  There are plenty of resources out there that family members can avail themselves to but I think the best are other family members.  Stay close.  For us, we have a strong Christian foundation and that drove us through and is our foundation.  Whatever your foundation is, use it to your advantage.  The National Brain Tumor Foundation is another resource.  They can put you in touch with other family members (care givers) who have been through this.  Reach out – it will help you.  You aren’t alone.

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