Blogging in B Minor

Today was a long day – and a circus at times! 

I met with my Neuro-Oncologist at 1pm and everything went well.  MRI looks ok – some “worsening” noted but at this point there is NO way to understand whether it is because the area is irritated from the gamma knife procedure (more likely) or there is actual issues.  My doc isn’t concerned.  So, we talked about that, the protocol we’ll follow with the vaccine then went through the standard “can you see my fingers here, there, there, here, how ’bout over here” etc. 

My case manager asked if the press could be present during my vaccine appointment in the Infusion Center because this was kind of a big deal and they want coverage.  No one in Northern California has ever used this, let alone at Sutter.  It’s a very cutting edge treatment and I’m all for it – the more I can help create awareness about brain cancer, treatment options and this vaccine the better.  We headed down to the Infusion Center after I was aware of this.  When my case manager and I got there the Sacramento Bee (Sacramento’s largest newspaper) was already there waiting – a reporter and photographer. 

So, while a team of nurses went to retrieve my injections from a centrifuge (I hope to have pics to post here tomorrow – it looks like something from outer space), I sat in a private room with a bed and was interviewed by the Bee reporter.  She was a great reporter.  She really wanted to know my whole story – first surgery, second, gamma, the vaccine, what it does – everything that brought me here today.  She wanted to understand the “back story”, my family – how this was affecting my wife and kids but of course wrapping this all around the events of today.  She asked me how I felt today and I told her that God brought me here and this is a blessing from Him.  She asked if I’m a religious man and I simply responded that I’m a Christian, attend Bayside Church in Granite Bay and believe that God has this all mapped out for me.  I continued by saying that we may not understand why I’m on this journey but I am and it’s not my plan, it’s His so I’m onboard. 

Once the vaccine was in the room other people had gathered around – there were probably 10 or so and in a 5 minute flash, both injections were done and we all gave each other a high five (even the SacBee staff).

So this was a good day.  From here forward we can see what happens and how my system responds to the vaccine.  We are praying for the best here – but praying for His will, whatever that may be.

There may also be some TV coverage with this – such as a piece on KCRA (the NBC affiliate here in Sacramento).   I guess this is really a buzz at the hospital and the press is interested.  Personally, think it’s great.  All of this for me is about awareness and hope – letting people know that advances are being made and there are people battling the same condition but are finding treatments, not using the same standards of care.  People need to know they aren’t alone.  They need hope.  They need to know that there are others that are living under the same circumstances.  Having frayed nerves around MRI scans.  Undergoing surgeries.  Taking new drugs.  Feeling fatigued and sick.  There were others that came before me and people that have come after me.  We learn from each other but most of all, we learn that we are not unique and certainly not alone in this.  

I’ll post pictures of the “space-pod” looking vaccine transporter when I can.  It’s fascinating in a word!

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