Saturday, 17 March 2018

Treading water

I’m happy to say I’ve been busy with life lately and haven’t made enough time to write a post for the blog.  As usual it’s been a lot of amazing good moments, smashed in beside some pretty awful moments.  Such is life.  I’ll take it all if I can just keep on doing it a little longer.

On the health front, I had a couple more infusions since my last post and saw Dr. Nixon again to discuss the results of a MRI of my spine and brain.  Overall, things are mostly holding, with no major changes to suggest we need to change our current plan.  So I’ll continue getting the IV infusion of the 2 antibody drugs every three weeks, and we’ll check to see what things look like in another 2 months in the brain and spine.  I’ll also keep my visualization of the team in my spine (and a few helpers in the brain) doing their work as well.  Certainly can’t hurt ;)

I had some tremendous visits with a lot of family and friends, many from out of town, in February and early March, that were a wonderful offset to some awful realities over the past few weeks.  A few pics of those visits below.  The bubble of energy continues to keep me and my family above the water despite the fatigue that comes from treading water for too long and in some very stormy waves.  

I’ve also made more progress on my 2121 project, creating visual pieces with short writings representing some life learnings since diagnosis almost 21 years ago- which has been a source of great energy.  I decided in early February to go ahead with planning an event in June to showcase the body of work I’m creating, irregardless of whether I am physically there or not.  I had debated moving ahead with it without the certainty of my future, but then realized it doesn’t really matter. So in June the work will be shown, and I’ll be there either in person or in spirit. I hope to share some more details on that very soon.

Earlier this week I got a good call from a strange number - you can check out the details here https://dailydividends.cpaalberta.ca/announcing-the-2017-cpa-alberta-achievement-awards/.  I had no idea that I was nominated by a large number of fellow CPAs last Fall - it is certainly an honour and a huge surprise that I am very grateful for.

Grady my "little" cousin and godson
So for now, I’ll keep treading water, letting the bubble help me and my family float, and await the next wave in Tricia’s Tides.


Colleen's birthday

Tasha brought me some tulips to offset the snow



Yvette's pups Sadie and Monty sent me a Valentine

Shelley and I caught up

Amy, Ryland, Mireya and I competing with dominoes....Kinsley was teaching my mom games on her Ipad

Grady wanted to see if he could still balance Davis and Jack

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