Thursday, 9 November 2017

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

Tuesday, 10 October 2017

Summer, Fall and Winter winds

Today actually looks and feels like Fall - a rare thing as we have been thrust between summer and winter weather in past weeks.  Snow one day. +18 the next.  Such is life - the phrase "if you don't like the weather in Calgary, wait 5 minutes" really applies.

Round 3 chemo is set for this afternoon.  Learnings from round 2 improvements should help make this round a bit better again.  Mouth sore strategies that result in less discomfort and greater ability to eat more, which lead to more strength, predictability of the worst fatigue days etc.  My vision issues continued to slowly improve during the past few weeks - left eye opening almost fully and some of the double vision resolving.  However, it's a bit like golf - "almost a par" counts the same as a bogie;) Until it fully resolves, I continue to have to use eye patches (soft, light-blue variety not the pirate kind) over one eye so that one eye works to focus, otherwise walking and talking to people is too challenging.  My balance and mobility overall has improved since round 1 although far from my June/July levels - I'm able to get off the sofa or toilet myself with my cane...a jump in independence only those who have lost themselves can really appreciate.  

I have also been benefiting from the use of a light weight travel wheelchair which can be folded up and placed into the car - my mom's cousin Ellen sent it to help manage the distances from the car to various appointment locations.  It has been tremendously helpful and allowed me to get to appointments less tired.  We have noticed how poor the "access" is for many places in Calgary - whether a lack of access or that the automated doors open into the wheelchair not away from them!

The biggest physical challenge these days is what I call "ding-dong head".  It's as though someone put a heavy metal cap on me - so when I walk and my head tilts slightly, I feel like I might tip over and even fall.  I've felt this sensation for a while and there are multiple possibilities of why I could feel it, with no real way of knowing ultimately the cause and if there is a potential solution or action that could reduce/eliminate it or what it might be  If I could get rid of the ding-dong head my balance issues would be so much more manageable.

Up until mid-round, I continued to accumulate a list of things I would do once the vision, balance  and other issues had resolved.  A list of people I would respond to (being a one-eyed jack, as I call it to my nephews makes typing slower), logistical things I need to address, writings and paintings I would like to do, has accumulated during August and September.  After an eye appointment, where a very efficient young eye doctor with limited empathy and communication skills asked my mom (I was in the room but I guess he assumed from my swollen eye-patched face and wheelchair seat that mom was a better bet) point blank "what's the prognosis" (I quickly responded to him by the way) and also noted blindness was a possible side effect of radiation to the brain, I realized that this may be as good as it gets. So I decided as much as my limited energy would allow, I'd start chipping away at my lists....whether it be the "shit list" (stuff like decisions of care and logistical details for my family if I'm not around anymore) or the good normal life things I'd like to do but are challenging with vision and ding-dong head.  So I'm slowly working on that list - this blogpost included.

The same day the young eye doc "snapped" me with (wintery) reality, I had a text from Dr. Brown, followed by a call and then a visit the next night by he and Naree, a nurse I have known since 1997 days at the bone marrow clinic.  They let me know some amazing (summery) news...an annual award is being crafted between the bone marrow program and Alberta Cancer Foundation in my name, that will recognize significant contributions by people similar to what I have done in the past 20 years.  It's already moving forward since they told me and my family in person, and is an incredibly overwhelming burst of energy for me during this time. Stay tuned.

Such full days - summery and winery.  While my limited energy, ding-dong head and vision issues limit me, I have tried to move on the lists, end did enjoy a few more visits, calls and shared messages with my close friends and family, including some from out of town and a birthday dinner for by brother.  With help from mom and a close friend (an naps pre and post!), I even managed to use the wheelchair to get to a move at the Calgary International Film Festival (one-eyed viewing still gave me something)  - I'm on CIFFs audit committee and would otherwise have done dozens of shows like last year.  It was a great film but more so a small victory in maintaining a fraction of my pre-April life that I so miss.

Of course this past weekend in the few Fall weather moments we had, how thankful I am for all the summery energy everyone continues to blow my way, how it helps me get through the wintry winds that whip up out of no where and what Thanksgiving really represents.  Whether a winter freeze comes tomorrow or much later, this could be as it gets, and we need to be grateful for things as they are today.  Thanks to all of you, and enjoy whatever season is blowing your way today.  Much love.

Tricia