Merry Moments Christmas

After weeks of mostly lovely brown but warm weather, the snow is falling outside now so all those people who need a white Christmas to be happy will be so ;) I personally don't need the snow.  Christmas in Maui 30 years ago taught me you can still have all the joy and beauty of the season (poinsettias and polynesian choirs easily outshine any frost).  Also my cane and wheelchair do a lot better without snow and ice!

It's taken me a while to get on here to post. Partly because it takes energy I am always a little shy on.  Mostly because it's impossible to capture in words all that has gone on.  So I'll just stay focused on one day for this posting.

There are days in your life you will never forget.  Good and bad.  You know - you can close your eyes and be there again.  Almost smell and taste the day.  Potent days and moments.

November 22 was a day like that.  In the morning, I had an appointment at the hospital with Dr. Nixon, which was preparation for my fifth treatment the next day as well as to hear what the MRI of my spine and head taken the previous Sunday showed.  Later that afternoon was the event for the Tricia Antonini award.  It was a bit daunting to get the MRI results so close to the celebration, as the MRI could really show nothing worth celebrating.  Remarkably, Dr. Nixon came in to the room with the report all smiles saying "I have good news", and it was marked with happy faces and words underlined.  Head scan showed improvement and no new areas of disease development.  Spine (which we were not able to directly treat) showed improvement in 2 areas and "resolved" in 1 area.  Quite amazing.  Bloodwork was fine so we were set to continue treatment the next day and hopefully continue what good was happening in my brain and spine.

That set the stage for the afternoon, which was rather remarkable.  People poured in to the auditorium, and it was standing room only for the event hosted by Alberta Cancer Foundation (ACF) and the Bone Marrow Transplant (BMT) clinic.  Dr. Brown did an awesome job at MC'ing and the people who spoke, including doctors and individuals I have deep respect for, sprinkled warm and glowing energy on me with their words.  The first award recipient, an incredible woman named Elaine Moses, included kind and generous words for me in her acceptance, and had also provided a limo for me and a few family members to arrive to the event in style.  Family and friends, some from out of town, doctors and nurses, some from 20 years ago, filled the room with the familiar "bubble" that has kept me going all these years.  The reception outside the room after included delicious ginger cookies and the wall of people who spoke to me made me feel as close to a bride as I'll ever feel.  Gratitude for all of this is impossible to appropriately articulate.

Many of you already viewed the amazing video created by Mike Lang through ACF but I've included the link here in case.  A Potent Life  There's also a longer story written by Diana Gaviria on their Tumblr blog here - Lessons Learned Outside the Bell Curve which does a great job of capturing a complex story in a very succinct manner.  We have some video of some of the incredible words spoken that afternoon as well - it's in the process of being complied so stay tuned.

Yes, the event was spectacular.  Talk about potent moments.  And the award plaque is already hung just outside the BMT clinic where it will continue to communicate significant contributions people make to making the road patients and their families travel smoother, and give them more moments. Forever.

Wishing you Merry Christmas moments.....Love Tricia

The first award! Congrats Elaine

Our sweet limo ride thanks to Elaine

Amy, Tasha and I boarding the limo

Holly and Heather for dinner after

Me and Dr B

The final product hanging just outside the BMT

Manhattan Moments (Yes!)

Someone asked me earlier this week "what does time feel like" while I navigate life after being told I'm likely going to be around for "months not years".  Time is rather irrelevant - some days are so jammed (with good and bad) that they seem you lived a month in 12 hours.  And some months just evaporate in a blink.

Since the last post, I got Round 3 chemo in, and a week ago today got a modified round 4.  Round 3 went better than 1 & 2 as I'd hoped - we've got the mouth sore pattern figured out so continued to win on that front.  Chemo grey fatigue was no fun but more predictable, so I just embraced when the "wall" hit me and slept as often as needed.

A couple of miraculous things happened towards the end of week 2 post-chemo.  Back in February Dr. Young (NYC doc) had sent me the annual Sloan Kettering transplant survivor celebration event dates. I've attended almost every year since I was first invited post transplant #3.  The fares were cheap so we booked our flights and hotel and Colleen did the same.  Of course, as the weeks and months evolved, it looked less than likely NYC would happen again.  Dr. Nixon however was supportive of making it happen, and the timing was decent as the MSK event was Oct 24 which was in week 3 post chemo, when I'm my best.  Of course, we still had to consider what it would be like navigating Manhattan in a wheelchair and how exhausting it would be.  I also had to get bloodwork a day before we left to ensure there was no major issue brewing.  It was a challenge to decide if all the effort and risk would be worth it.  We all do this every day as you know - make choices and wonder if they are the right ones.

Wonderous view from a bench

You'll see my boarding pass below - I had to take a picture as it was so surreal.  We made it.  And after a good sleep and delicious brunch the morning after the flight, with the wheelchair as my vehicle (thanks Mom for the awesome driving) we made it to Central Park.  A warm, sunny day.  We found a bench and sat watching the hundreds of people enjoying the park energy.  The other incredible thing was I was watching all of this with both eyes...and seeing just one of everything.  My double vision had all but disappeared just as I was exploring NYC. I can't articulate how lovely it was to see my NYC - it was like a reward for taking the risk to go.  It certainly was worth it.

MMMM Coconut shrimp

Totally crazy.

MSK Survivor event

Watching ping-pong in Bryant Park

Watching people in Central Park (one, not double of them!)

My Chrysler building 

Dr. Young and I 

The rest of the trip did evaporate quickly - with lots of rest - but the MSK event was fantastic and my visit with Dr. Young was better than I could have hoped for.  We did a couple of meals out - Tommy Bahamas on 5th included (thanks Tim & Judy!) and a fair bit of "wheeling".  As it always does, NYC gave me "my fix" of Manhattan moments.

Since NYC, I've been battling a bit of a cold, getting rest, and responding to some calls and emails in preparation for the Tricia Antonini award that will be presented to the first recipient in front of a small group of people on November 22. I met with Dr. Nixon in her Wednesday clinic.  Bloodwork was a bit off so I only received 2 of the 3 drugs the next day Thursday and on Friday received a couple units of blood.  Before the transfusion I also got to attend the groundbreaking (inside, thank goodness!) of the new Calgary Cancer Centre that I had been a patient advisor for the design phase.  Time again is rather surreal.

In the midst of these wacky weeks, 3 teams of Tricia's Trotters in Vancouver, Calgary and Regina made it out in the dusk with lit lanterns to walk, raise awareness and thousands of dollars for Leukemia & Lymphoma Society's Light the Night events.  I am always in awe at the dedication of the trotters and want to thank everyone involved in this year's events.

So November continues to be focused on Alberta Health and Alberta Cancer Foundation's event and getting to some of my "good list". My eye continues to hold on to seeing "one" almost all the time, although my ding-dong head still throws my balance off almost all the time.  Regardless, I plan to continue doing as much as I feel able, knowing that if I was able to get to NYC I can do almost anything. Cheers and love...Tricia