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

10 comments:

Mary Ellen said...

Dear Tricia,
Your post today certainly lets us know how serious your illness is. It's hard to imagine all that you have gone through and all the upcoming consultations and treatments you are still facing. Thank you for sharing all of this with us with so much calm and grace.
You're incredible. Yes, you must spend what energy you have on what you know is best for you. We all respect your wisdom in that. Our minds are hearts are with you each day.

Sending love and healing thoughts,
Mary Ellen & Bob
xoxo

Amanda Kanuka said...

Gawd, I hate the word metastatic! Really, superhero movie should be made about people like you. A true wonder woman if ever there was one. You don't stop fighting but most importantly, you don't stop living!

With warm hugs & hope,
XO
Amanda & her minions

BJ said...

Dear Tricia,
Thank you for the update. The last two months have been difficult and uncertain, but you have weathered them with grace and fortitude. We will keep posted to hear the results of your upcoming tests and will keep you always in our minds, hearts and prayers.
Love, Bob and BJ

Louise and David said...

❤Dear Tricia,
Even as you write about spending your limited energy on only what is good for you, you gift us again with your presence on Tricia's Tides📜✒. Obviously, writing is one of the tools you use for shining the spotlight on your darkest moments, examining how you've managed to survive, learning about yourself and preparing for what is yet to come.🔮 In doing so, you honour us and enrich our lives.🎁

🎢We know that you regard your army of supporters as a major force in your various battles against cancer and in your past victories.🔔 Because you write with such precision and clarity, we understand exactly what you mean when you tell us today that "the fight is far from over".

We are with you now, as always, Tricia.🎢 Though you face a terrifying uncertainty, we trust you to choose what is best for yourself, decide what you really want to do and do it.🏫 Just know that your army is constantly surrounding you with light, prayers, energy and love.💞

🍷🍷to LIFE then, with love,
💌Louise and David

Marcia said...

Dear Tricia,

Thank you again for updating us. It is hard to think of how much more you still have ahead of you. But I appreciate your commitment to stay in the present and to do what you want to do as much as possible.
You continue to inspire and amaze me!
Sending much love and as always, prayers.

Marcia

Bonnie Antonini said...

Dear Tricia
Thank you for the update, we sincerely appreciate it! We are with thinking of you as you maneuver your way through your ongoing appointments and tests! You are class my dear! We will be praying for you and sending a positivity!������

Michele Kimmett said...

Sending relentless, crashing waves of support! Hugs, love and prayers,
💕Michele

Louise and David said...

💌Hi again, Tricia!

💡We just want you to know that we are thinking of you on this day of your appointment with Dr. Stewart📅. Your candle of hope is already lit here in our St. Andrews home🏠. It's a strong, bright and enduring flame that reminds us of you.🔥

🌏Big, gentle hugs across the miles,
Louise and David

Ellen said...

Sending you some good thoughts and extra strength. I would love to see some of your art sometime. I've found the making to be the most therapeutic myself.

xoox

Laura Roberts said...

HI Tricia, We haven't checked in for a while but rest assured we are thinking of you often. We hope you do find energy to do a little something you love each day. Sending big hugs your way.

Laura, Jamie, and James