Complexity

A quick hello everyone and thanks for all of your messages and support.  Things have been extremely challenging over the past couple of months, including reading messages and watching TV.  I have been spending most of my days sleeping a lot, when I can.  It's been difficult to find enough energy to leave my condo to go to medical appointments.   It's also difficult to have many visits from anyone outside of my caregivers or send messages through my phone (Tasha is typing this for me right now).  So please don't take offense if I haven't responded to your messages or request for a visit. 

These challenges have led me to question whether continuing treatment is giving me the quality of life that I'd hoped for.  In the last week, I was given the results of an MRI and CT Scan that were positive in a remarkable way.  This has left me confused based on how I've been feeling.  I've decided to take a 3 week treatment vacation to see what happens and decide my plan from there.  Life is unbelievably complicated. 

I graciously ask for you to continue sending me strength so that I can try to get through this time. 

Little Pieces of Sunshine

I just wanted to make a quick post, it's been a while since I last reported anything.  I've been doing radiation and chemo for the last number of weeks and have done a better job with it than I had before I went into the hospital back in July.  Overall nothing really has changed too much, I've been starting to do a small amount of items with a limited number of friends & family, which I will continue to do as long as possible.  So if you don't hear from me, you'll know I'm just trying to make life work as long as it's possible.  And with my eyes and my head continuing to give me trouble, some of the responses to people are going to be a little bit limited. 

Earlier in the week, the second Tricia Antonini Award was provided to Dr. Ashan Chaudhry, which I personally had been involved with his application and he's been one of my amazing doctors since day one.  So it was extraordinary to see his name be identified and see his wife & three kids see what his dad has spent so much time doing for other people.  He's one of the angels that I have been so lucky to have known.  Kind of like a lot of you.  I really don't know what is coming and I will do with it whatever does come, but wanted to let you know that I'm still around and I'm still enjoying from time to time, a little piece of sunshine.  Thank you for what you're sending me, it continues to work.  If you can, do as much of it for your own self as possible.  Remember what 21 said and if you can't remember, here's the link  https://www.youtube.com/watch?v=kE7IKGpKuOs&feature=youtu.be .

Cheers, Tricia

Incredible Life

I'm ecstatic to make a quick posting of my own again. Since last week when I had Tasha post for me, the week was both amazing and horrific all at the same time. I experienced one of the worst days of my life about a week ago (and that is not something I say often) and was very much prepared to let go of my life. The complexity of what has gone on over the past week is impossible to explain properly. 

All I wanted to share with my amazing bubble of people that continued to support me is that I am still here, back from the hospital and I am at my condo again with mom staying with me. On top of everything from a week ago, I started radiation 4 days ago and have 4 more booked.  Life is truly incredible and you never know.  

So I continue to ask you with such thanks for your support and energy but also wanted to let you know that I have very limited energy to reply.

An Update

Tricia asked me to post a quick update (it's Tasha) to let you know that last weekend she was hospitalized due to some unexpected complications from her treatments.  She remains in hospital and is spending the limited energy she has focusing on improving.  Due to this, she is not able to have any visitors nor does she need anything sent to her there.  If you wish to send her some wishes, feel free to post them here and her parents, Brandon and I will read them to her.  What she's asked for, is for you all to send her any positive and healing energy you can.  Thank you.

Another Change

Since the wonderful 21 night, I have had some changes to my health that I wanted to share.  The recent MRI showed that things continued to get a bit worse in my brain and treatment options are changing and potentially even becoming more limited.  I started a new chemotherapy combination this week which is different and I am figuring it all out right now.  I may or may not end up doing radiation as well and will likely not know until next week.  So lots of unknowns right now.  If you don't hear from me, I am just navigating remarkably a new set of issues.

What I ask from you is to be patient with me and if possible, please continue to explore 21, as that will give me strength and I would really appreciate it.

https://youtu.be/kE7IKGpKuOs

21 Update

https://youtu.be/kE7IKGpKuOs

Extraordinary 21

The evening of June 21, 2018 - 21 years since the start - was an extraordinary one for me.  I shared 21 visuals, 18 writings and recordings with over 150 fantastic friends, family, doctors, colleagues and neighbours at Crescent Point Bistro with some funds raised for Leukemia & Lymphoma Society.  My hope for the night was filled with people sharing and receiving life.  It's been taking me a while to return to the world again.

Check out the photos that were so generously donated on my facebook profile.

Here's a link to the evening my uncle pulled together.  For those who were there and those who couldn't make it.

https://youtu.be/kE7IKGpKuOs

Tricia_21_Tour_v2 youtu.be This video is about Tricia_21_Tour_v2

The ride continues

Remarkably I am sitting on my balcony typing this post.  I know it's been a while since I last posted but at least I waited long enough for the heat to finally kick the snow and cold out.  It's going to be 29 today...29? Seriously. Anything can happen.  In weather, in life.

Over the past couple months I had been feeling the weight in my head increase and saw a bit more double vision to the right side.  Not massive, but enough to throw my balance off more than usual - maybe like a step up from the Tilt a Whirl to the Polar Express at the amusement park rides.  So I guess I wasn't shocked but just disappointed when my MRI results I got last week confirmed there has been progression of the disease in the brain. I didn't have the spine scanned this time so not sure what's going on in there but the brain changes were enough to change treatment up.  I'm moving from my current 2 drugs every three weeks to one "combination" antibody/chemo given IV every three weeks and they got me in to start it the next day, Thursday afternoon. A new but relatively familiar set of side effects to watch for on this one. Nothing too serious so far from what I can feel - perhaps a bit more fatigue and numbness in my feet and legs. Hopefully the next MRI will show more holding on disease progression. On a positive note my CT of abdomen, pelvis and chest showed no issues so things are calm on that front.  Blood work is all good too.

Life has been so full in past weeks.  Some awesome visits from out of Calgary family.  Time with my family and friends in Calgary including my beautiful brother.  Painting, drawing and writing for my upcoming 21 event in June.  That event is actually happening, with some amazing support from Crescent Point Energy and Leukemia & Lymphoma Society (and Tasha!).  A short article published in Leap Magazine by Alberta Cancer Foundation took a refreshing creative angle on my usually long (Lord of the Rings long) story - take a look .  So much positive energy.

The good stuff kept rolling this past weekend when I rode up to Edmonton with mom (Happy Mother's Day!) and dad and was awarded my Fellow at the CPA Alberta Elevate awards.  Friends and former colleagues Jill and Yvette had put together the massive nomination forms and support letters and were there to see me wobble the stage to accept my new certificate. It was an overwhelming night - such an amazing event and shower of recognition amongst hundreds of accomplished people. If you're on LinkedIn there's a few shots of the evening - try the link.  I'm so grateful.  There are just so many incredible people and moments out there to offset the challenges.

So the roller coaster ride continues.  A little warmer.  A little more unsteady. Just like at the amusement park, I've laughed more in the past weeks, but vomited more as well.  Hoping I can keep riding longer.  Thanks for your energy providing me an air bag for the sharp corners and upside-down loops.

Thrilled to attend with my Dad - 43 years as a CPA, CA

They hung our pics in the entry to the event

Our pics and thank you quotes scrolled through the night

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

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