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.

Tricia