Friday 2 June 2017

New hair and some love from Fiji

Another week has passed and I continue to see improvement or decrease in some things I've been experiencing but an increase or no change in some others.  Fatigue, headaches and nausea continue to be the main culprits, but I'm able to manage all with patience, sleep, Tylenol and Gravol.  The good news is my balance has improved and I just stopped using my cane a couple days ago.  The "Dex" effect on my mind continues to drop off, which has allowed me recently to actually "sleep" when I sleep, not "hover" as I was doing until this past week.  People don't realize how lucky they are to actually sleep and dream.

I've had several medical appointments over the past week and no new issues coming out of those to deal with out of those. The next one is with Dr. Kelley, my brain surgeon, this Wednesday, so we'll see what he has to say. My head is looking really good given what it's been through, with the 30 staples and stitches almost totally healed. I also got a new wig - the brunette version of the blonde one I had that will be lighter for summer.

So physically I'd say on a net basis I'm improving - certainly being able to walk without a cane makes me feel a lot more normal.  Mentally it's been probably net flat for the week - the upsides of sleep and walking have been countered by my mind filling in some of the gaps or memories I have of Unit 11 post-surgery.  I'm writing about it - as some know a year ago I started on a body of written work and visuals (paintings/drawings) about life that I plan to share next June - 21/18 which will be 21 years on June 21 since diagnosis.  So I've just added to those files in the past week or so to add my recent experiences.  Because of both the impact of the Dex and the craniotomy, the 8 days post-surgery until discharge was the scariest time of my life (and as you know I have ICU and the butter experience to compare to) and I continue to work through all of it these days.  As a friend who has survived head trauma recently said to me, "we really are our brains".

On a lighter note, I thought I'd share something crazy cool that happened in the last month and a half. Many of you know one of my passions is the Survivor series on TV and I've been in a "pool" with 3 friends for the past 28 seasons where we draft contestants etc.  A few years ago my awesome cousin Brant got me and the three friends of mine tickets to the LIVE finale in Los Angeles and we had an incredible weekend in Hollywood to see it.  About 2 days before I was discharged, when my mind was still challenging the reality of many things, my mom and dad showed me a video that Brant had sent, from Jeff Probst (yes, THAT Jeff), hoping to put a smile on my face.  Check it out.  Needless to say it was hard to imagine that it was real!  A few weeks later when I sent Brant an email thanking him, he told me Jeff was following my blog and if could send some "vid" back he would pass it on to Jeff. Given my mental state, it's amazing that with mom's assistance I was able to create the "vid" in one take and get it into Dropbox to share back!  Check it out.  I still shake my head at his video - thanks again Brant!

Tonight I'll see Jack and Davis and we'll celebrate their upcoming June 4th 11th birthdays (!).  I've had a couple visits with friends this week too, so starting slowly towards another new normal every day.  My gratitude for everyone's energy and prayers becomes deeper and deeper as I understand or become aware of what has transpired over the past month and a half.  Thank you just doesn't express how I feel.

Suck in the energy from the sun and enjoy the short summer us Canadians get.  Cheers, Tricia