Blogging in B Minor

I’ve been a bit out of touch but for good reason.  I’ve been extremely busy, both for pleasure and tending to medical responsibilities. 

It was a very busy week last week.  On Wednesday, I had lab work to complete in prep for Avastin on Thursday but have had vision issues due to meds.  I had a co-worker take me.  I have to lower a dose of one med I believe.  Today isn’t so bad.  I’ll be discussing that today and likely lower this dose starting tonight.  I continued with physical therapy in the afternoon.  My left side (primarily my left leg) is weak so I’m continuing to work on this.  I was far too tired to work out so I opted to receive functional electrical stiumaltion which sends electrical charges into the muscle in my lower leg and down into the arch of foot – an area I cannot move at this point. 

Also on Wedneday, Aidan and I had a 7pm event at the church.  Aidan spent the previous week called Breakaway at the church.  Waterslides, arts and crafts, etc.  This was an opportunity for the kids to show parents what they did for the week.  It was great!

On Thursday, I had an Avastin infusion in the afternoon preceeded by an appointment with my oncologist.  I had another appointment after that at 4pm.  Talk about being whipped!  It doesn’t sound like much to most people but those of you who deal with living life with a GBM can relate.  I’m still working and managing all of this plus of course trying to just lead a normal life but it’s at times.  By the end of most days, I’m pretty tired.

I hope all of you in the States had a great holiday.  We had a great time although I still struggle with seizures from time to time.  I had several this weekend but hadn’t had any for a week or so which is still much better than the every other day roadblocks I ran into in the past.  I’m still on the upward climb to the 6 month peak of the post-gamma knife bell curve related to seizure activity.  It is not unexpected for the seizure activity to increase in frequency and severity so keeping them at bay the way we have is a victory in my book.

So what is next?

• Avastin Infusion on July 16th
• MRI to be scheduled prior to July 22nd
• DCVax on July 22nd

However, as I’ve mentioned so many times – the key for me is to stay in today as much as possible.  It’s not always easy but is something that I strive to do.  It’s all we have and is the only way to be present.  If I live in yesterday or tomorrow I’m no use to myself or anyone else.  Sure, I have be strategic with regard to my direction but I don’t have to stay there.  Likewise, the past is the past.  I can’t dwell on any past decisions.  The outcome of those decisions are done and they are exactly as they should’ve been.  I feel comfort in knowing this.  God knows where this is going and He is in control, not me – the doctors – no one.  This fact alone helps me each and every day.  I pray for His will for me and my family and although I may not understand it, I know that there is a higher purpose here.  Perhaps it is simply my testimony and it will help others.

I have told this story before but it’s worth repeating.  When I went through the “why me / why us” stage in the beginning of my diagnosis, there was a day that changed everything for me.  I was in the cancer center one day waiting for the elevator.  There was a little boy standing next to me with his mother waiting too.  The boy was about the same age as my son, Aidan.  I looked down at him and smiled – he smiled back with a big smile – joy in his eyes.  The absence of eye brows, eye lashes and hair made it clear that he had undergone significant chemotherapy and was battling cancer at the age of 5 or 6.  But how could a boy this age still be happy?  And how could life shuffle the deck and deal this card to him?  He hasn’t experienced anything in his life yet.  I thought to myself, “how many seasons this boy has in front of him that he may never live to see.  This is fair.  Why him?”  Well, needless to say, when applying this to my own, selfish thoughts of “why me” it changed my perspective.  “Why not me?” I thought.  What makes me immune to this?  Nothing.  Why are entire families taken out in car accidents?  Why do bad things happen to good people?  It’s hard to understand but there is a higher purpose.  It’s hard to wrap your head around and it still is for me, however, it’s easier for me to just turn it all over to God – He is in control, not me.  And, I do as much as I can to keep myself in TODAY.

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