Wednesday, January 27, 2016

Scan today, results tomorrow

Since Jessica did such an awesome job keeping everybody abreast of my situation while at the hospital, I felt that my input wasn't really needed so I didn't post.  There was a lot of scary stuff going on that week, but we made it through and other than this tricky little spot of cancer in my neck, I am in tip-top shape.  If only my ONE problem wasn't such a killer!
In the hospital with my boys and some EEG hookups
A quick recap: infusion #2 went as planned, but I didn't feel well all morning and it culminated in a fantastic trip to never-neverland after my infusion was completed and I was walking back out into the waiting area.  I don''t know how many out there have experienced a good vasovagal syncope, but it is quite an interesting event.  I have had one before, after my very first surgery when they removed one of my neck drains in the doctors office.  I could handle one every four years or so, but what I have now is a bit excessive.  From the oncology office, they whisked me by ambulance over to Seton Hospital to the emergency room.  I felt good there, but then I could feel the beginnings of another episode, so I told them what was about to happen.  And happen it did, although this time a young ER doctor must have know the perfect way to abort and impending vasovagal episode when he yanked my pants down and stuck his finger up my butt.  WHO KNEW??  In his defense, he claimed to be checking for internal bleeding, but that twinkle in his eye told another story.  They admitted me into the hospital for observation and I stayed there until Friday.  They ran all kinds of fun tests, but in the end I am basically stuck with a situation where my tumor is growing in an area right next to the vagus nerve and tends to illicit these responses from time to time.  I am taking crazy amounts of calcium and muscle relaxers and anti-anxiety pills to try to keep it "under control".  Thus far I put myself into two categories...'zombie' and 'about to pass out'.  Zombie class essentially means I am on the couch or in my bed asleep.  The other one is as it sounds, I am up and about but feel like I could pass out at any given moment.  Such is my life right now.
Me, the day before surgery #1
The scan today is my first scan while on treatment.  I have had two infusions now and this is the first check to see what is happening.  Unfortunately I have the displeasure of watching this cancer grow from the front of my neck, so I know that overall there is progression.  I feel like it has slowed down, stopped in some areas and changed appearances over the last few weeks.  When this scan shows progression, that will put me in a protocol where I have another scan in about 4 weeks.  If that one they also shows progression, they will move me into the other arm of the trial where I will be getting 2 drugs instead of just the one.  To be fair with this first course of treatment, it takes time for the drug to begin to "train" my body to fight the infection.  It can take 8-16 weeks or even longer for the drug to begin to show signs of effectiveness.  That covers the immediate future.  Right now we are living one day at a time and just trying to make it to the next and get those infusions every 21 days.  My next one will be February 1st, that is next Monday.
Me, just before the latest crap-fest
Many thanks to all those who are assisting in this journey.  It was great to see all the friendly faces while I was in the hospital.  The meal support has been great at the house, so humbled by the place that we live and the love and support we receive out here.  Jessica has me on lock down, so I am basically confined to my house with a sentry standing guard over me all day long.  Thank you so much for all your continued thoughts and prayers and good juju and unicorn farts, cookies, stuffed animals and tears.  It's a long tough battle and the support and strength I get from those around me keep me going as best I can.  Much love to all.

Wednesday, January 13, 2016

Bryce's Hospital Stay

Hello to everyone that follows his blog.  This is Jessica and I am sending a message out through his blog for those that follow him here, but don't to the Facebook thing.  I have been updating on my blog, so you can all read along.

The latest one is:
ChannelJess.Blogspot.com/2016/01/hospital-stayday-3

And you can always be up to date by clicking here:
ChannelJess.Blogspot.com