Sunday, 11 June 2017

Beyond the Brain

June 11. Tomorrow marks 9 years since my third transplant. (A shout out to Louise for the incredible June 12 customized congrats card!) Seems longer ago and yet like it was yesterday. And still it's not been 2 months since the latest book in my roller coaster series started. Time is so strange. Surreal.

Once again, the week has included progress and challenge of different forms.  Continued improvement in my walking.  No increase in intensity of headaches. Dr. Kelly was quite pleased with how my head has healed since surgery and my overall recovery from the surgery and radiosurgery.  I got a copy of the pathology report - a bit daunting to read explicitly the nature of what was removed from my brain.  Beyond the size, confirmation that the tumours are rather aggressive metastatic breast cancer,  Until we see the MRI in late August, there is no certainty as to whether there are further metastases or if there are any more. For now, the plan for the brain is in wait mode.

Which means now the focus shifts to the "beyond the brain" reality.  Metastatic means the breast cancer travelled outside of the breast, and while it screamed loud enough in the brain in April, it could have travelled anywhere else the blood runs.  So a week tomorrow I have an appointment with my original breast oncologist Dr. Stewart, who led my post-mastectomy chemo treatment plan two years ago.  I'll find out what will be done to assess the rest of my body for metastases and further related steps will be needed to treat and/or monitor.

In the interim, days evaporate. I am not challenged with what to do with my time - boredom is not a feeling that I am even close to enjoying yet.  Between medical appointments, I perhaps have enough energy to schedule an occasional visit with a friend.  A nap is required before and/or after. Getting dressed and assembling all my parts for the visit is also exhausting. Mom is still living with me 100% of the time - we rotate between my condo and mom and dad's house, and deal with related logistics like groceries and laundry for the 2 locations.

I want to again thank everyone for the continued waves of amazing support.  It is incredible I am doing as well as I am coming out of this first phase of the fight. As my physical "brain" phase pauses, I now enter the uncertain "beyond the brain" phase.  The reality is there is a lot of uncertainty. I also now have the capacity and challenge to try to process what has actually happened in the past 2 months.  I really haven't had the chance to digest all of this.  I've been in fight mode as things went so rapidly since April 15.

As my writing "The Black" (which I wrote at the end of March, BEFORE this diagnosis) suggests, I will reflect on how I managed to survive the past 2 months of quicksand, learn from it, and be ready for the next hit.  I also need to figure out anything I really want to do and do it. Everything I spend my limited energy on will have to be only what is good for me and no one else.  I have to respect that while I am holding my own, this fight is far from over.


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