Thursday 1 February 2018

Despite the circumstances

Time evaporated during the frigid days of the holidays - thanks to dominoes and cards with Jack and Davis.  It was exactly how we like it - uneventful, restful and chill.  Lots of laughs, good food and good rest.

Since the new year, I've had 2 treatments (they are IV every three weeks) and things continue to be stable on the disease front and improving on the issues front.  2 scans I had during the holidays which were focused on the "non-brain/spine" areas of the body were clear.  A small lung issue showed up but we're just going to monitor it at this point.  I saw Dr. Nixon early January to review these scans and she was happy with our success against the key symptoms related to vision and balance.  The plan forward is to continue the infusions of antibodies until the benefits are no longer better than the risks.

To clarify on the infusions - as many of you have asked, and it can be confusing.  Basically, the "chemo" I started doing in August was initially 3 drugs - 1 "chemo" drug and 2 "antibodies".  The objective of all 3 is to reduce or reduce or limit the advancement of the disease.  The chemo drug does that more broadly - blowing apart cancer cells but of course damaging healthy cells while doing so.  Hence it is more toxic to the body,  Antibodies are more focused as they target a certain type of cell that exists due to the type of breast cancer tumour (primary or metastatic) has.  In my case, the tumour was HER-2 positive, so the two antibodies look for those cells to "attach" themselves to and block the reproduction of disease cells.  The antibodies don't kick the healthy white cells like the chemo one does, so positively impacts some side effects - i.e. my mouth doesn't get all infected and make eating difficult.  We did 3 rounds of "chemo" with all 3 drugs infused, and then dropped the 1 chemo drug after that. So, since November, my IV infusions have only been the antibodies and therefore some of the side effects I had earlier have subsided.  On the downside, the antibodies are hard on the heart, which had already taken several beatings over the years of treatments, so I had an Echo test earlier this month just to keep an eye on that as well.  It's all a market of risks - choose one instead of another - but right now it seems like the choices are striking a pretty good balance.

What is remarkable is that in early January, Dr. Nixon indicated I didn't need to see her (pending any changes of course) until March 7.  MARCH - 9 weeks from the day I saw her.  It was surreal to insert a calendar entry for so far away.  Back in August, I wasn't sure if I'd make Christmas, let alone MARCH.  It doesn't change the story ending, but it is sure nice to have a few weeks with just the infusions and minor appointments.  I am still rather exhausted most days, but I've been able to enjoy more visits with friends and family and even go to a few movies (prep for the Oscars).  Wheelchair seating or sometimes using just my cane (!). I just had my oldest friend (friendship age not hers) fly in from Vancouver for a night and it was such a refreshing shade of normal for 40 hours.  February is looking full of more visits like those, and more time with family and friends, as well as hopefully progress on my 2121 project.  Normal life stuff.  Miraculous and marvellous.

Later this month I'll get another MRI of my spine and head (last one was in November) and then March 7 we'll see where things are at.  I've still got my "guys" working on my spine (a visualization I started back in August when we knew there was no treatment for the spine) so you never know.  Regardless of what the scan shows I'll continue enjoying what I can for as long as I can. My doctors agree that symptoms rule the action - even if the pictures aren't pretty, what really matters is what symptoms/function I have or don't have.  I recall my doctors telling me years ago after ICU and the pulmonary embolism that my lungs "look like someone took a crow bar to them" but because my pulmonary functions tests were almost normal, I didn't need to use puffers or medication.  It's kind of like life.  Life circumstances can seem pretty horrific but if you can create and sustain happiness regardless, what does it matter?

I realize this post has been a bit technical and medical but I know a lot of you have asked such questions.  How are you doing? just isn't easy to give a simple answer to.  Overall, I'm feeling better than I have felt in the past months. Thanks for your continued support, prayers, love, energy or whatever you prefer to call it. 💙

Tricia


14 comments:

Christine said...

Dear Tricia, Thank you so much for the update. I greatly appreciate the technical and medical information. Your writing and communication skills amaze me! Your entries always provide me with inspiration to "create and sustain happiness regardless of the circumstances of life". I just can't tell you how much I believe that you inspire so many people with strength and courage and appreciation for each present moment in our lives. I am so grateful for you! I continue to send you support, prayers, love, energy, and white light, healing, and peace.

Rock on!
Love,
Christine

Mary Ellen said...

Dear Tricia,
Thanks so much for your latest blog entry. You continue to amaze and inspire me. Your wisdom & courage in dealing with your "circumstances of life" teach me so much about acceptance and staying in the moment. I love how you refer to "normal life stuff" as "miraculous and marvellous". It's so true that our moments are made up of normal life stuff. May you continue to have lots & lots of those moments.
Sending love and prayers your way.
Hugs,
Mary Ellen and Bob
xoxoxoxo

Amanda Kanuka said...

Yes! Your superpowers continue to amaze! Thanks for the details, and the spine healing army direction... now I have a specific spot to send my troops. Your perspective always warms my heart and feels very familiar. Enjoying the Oscars season binge as well... Caillie has become a fan of the luxurious wheelchair seats. So funny.

xoAlways,
Amanda & crew

PS- new season of survivor soon! Woot, woot.

BJ said...


Dear Tricia,
Thank you for the update and latest info on your treatment. We are always happy to hear that you are enjoying life in spite of the restrictions. My many friends often ask about you and are amazed and inspired by your spirit--as are we. We send our love, good vibes and best wishes to you and your family. Hugs to all!
BJ and Bob

ed said...

Hi Tricia,

We are thinking of you and your supporters with love and prayers.

Uncle Ed and Deanie

Louise and David said...


👍Thank you for this, Tricia. Just as we felt we were losing touch with events in your life, you posted this update and answered all our unspoken questions📃✒.

🙌What amazes us most is how you are still leading the way in every arena of your life.🎭 Your medical team is clearly taking its direction from you.💉 Through tests, scans, infusions and watchfulness,👀 they are addressing your symptoms, responding to your key issues and striking a delicate risk/reward balance.🔑 They are listening to you👂 and learning from you👣.

Then, beyond the reach of their therapies,💊 you are going inside yourself and visualizing a unique healing action taking place up and down your spine.🔥 And why? Because "you never know"!🔮 Every day, we light your candle of hope with that same openness to new possibilities.🗽

💂Today your growing team of supporters also feels boosted by your leadership.📣 Once again, you encourage us to stand behind you in ways that may seem small to us but which are somehow big for you.🙏💓🔥✏

Despite the odds, you continue to make so many delightful personal choices that include rest🙇, entertainment🎦 and good times with family and friends🎲. We especially enjoyed reading about how you were able to experience a 'refreshing shade of normal' for several hours in the presence of a good friend.🎨

We love the way you speak of the marvelous moments of everyday life🌅 and how you are choosing to create and sustain happiness in your own circle for as long as possible.💞 Though you remind us that the ending will not change,📘 we want you to know that your story itself is one of vision💡, balance🍃 and determination💪. In fact, it is already being told and is inspiring so many others to celebrate life, too.🎢

Here's to more moments for you, Tricia, with our love🍷🍷,
Louise and David 💕

Louise and David said...

👋Hi again, Tricia,
I am back with a question for you. It's about the 2121 project you say you are still working on.🎁 Does it have to do with the body of paintings🎨 and writings📗 that you mentioned last April when you posted the passage called "The Black"?🎭

🙋Hugs from a too curious Louise👵

Bonnie Antonini said...

Hi Miss Tricia!

Just sitting here thinking about you! Sending you strength and Love❤️️
I hope that you are having a good day!
We miss you and love you tons!
Love Bonnie❤️️💐

Manpreet said...

Thinking of you and admiring your courage and strength. One of your sentences was so profound and stuck out to me:
Life circumstances can seem pretty horrific but if you can create and sustain happiness regardless, what does it matter?

So proud of you and your passion to enjoy all those happy moments in life. Some big, some small, but all of those happy moments make life beautiful.

Hope to see you soon for a catch-up. :)

Manpreet

Marcia said...

Hi Tricia, You've been on my mind so much lately. Just wanted to say hello and let you know that you are in my thoughts and prayers. I see the new season of Survivor is starting on Feb 28. Always think of you! The ultimate survivor! Thank you for the update and the way you embrace life 'despite the circumstances'.

Much love, Marcia xo

Unknown said...

Hi Tricia! I've been thinking of you lots these past couple of months and really appreciated your blog post from Feb 1st (the technical detail is excellent!). So wonderful to hear you've been enjoying some visiting with old friends and some "normal" time. And really wonderful that you were able to schedule an appointment into March :-). You definitely help put things in perspective for some of the day to day challenges that come up in life. You continue to amaze and inspire! Thank you for that.

Carol said...

Hi Tricia,
Tony and I enjoyed our visit with you and your mom and dad in Jan. The gathering hosted by Marty and Karen was so memorable. We started watching Survivor again this week and thought of you and your loving family. You are amazing.
Love Tony & Carol

Bonnie Antonini said...

Hi Tricia,
Just sitting here thinking of you! We are getting a big dump of snow, I am sure it's more than we had all winter.
Sending you some prayers and tons of Love ❤️️
Love Robert and Bonnie

Unknown said...

Thinking of you �� love the detail with which you describe things