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

18 comments:

Sonia said...

Tricia ๐Ÿ˜ƒ such an amazing honor to have that award in your name!! It is so well deserved!! Sending a virtual hug your way ๐Ÿค—
Thank you for the update! I was thinking of you yesterday, as I often do, and realized that we should not save a day such as Thanksgiving Day to give thanks for everything that we have. Your post today reminds us again of that as you update us on your lists!
As round 3 begins, I pray for continued symptom control ๐Ÿ‘
Glad to hear you are able to get around a bit more and get out and enjoy this winter / fall / summery weather!
Sending energy your way and lots of love ๐Ÿ’Ÿ๐Ÿ’Ÿ

Sonia

Jenalee said...

Tricia, thanks for the update. Sonia is very right about being thankful for everything we have each and every day! I am sending my love and prayers and positive energy your way.

Mary Ellen said...

Dear Tricia,
Thanks for your new post. You always touch my heart with your honesty, strength and courage.I am amazed at everything you do.
It's totally awesome that the annual award, recognizing significant contributions, will be in your name. You have given so much and accomplished so much, and I cannot imagine anyone more deserving. It's an incredible honour. What a girl!
Bob and I keep you in our thoughts and prayers.

Lots of love,
Mary Ellen
xoxoxo

Bonnie Antonini said...

Dear Tricia,

Thank you for the continued update! I hope that you have more summery days and moments during your 3rd round. I love that there will be an award in your name. We love you and are continuing to send positive thoughts and prayers your way.
Our love to you and your family!๐Ÿ’•๐Ÿ’

Louise and David said...

๐Ÿ’ŒDear Tricia,

๐Ÿ’จSummer, fall and winter winds stir and rise in your writing as surely as they do on a shifting Calgary day. Your young eye doctor's dose of wintery reality✳ has generated a list of things we want to say to you today.๐Ÿ“ƒ

...First, thank you for putting this blog post on your list of 'normal life' things you want to do.๐Ÿ“ As you start Round 3 of Chemo, we appreciate hearing what you have learned from the first two cycles and how applying that knowledge might make things a bit better for you in the third round.⏳ We are encouraged by the subtle improvements you have already gained by going ahead with such tough treatments for symptom relief๐Ÿ’‰.

...And thank you for always being so honest with us.๐ŸŽจ You paint clear word-pictures of what daily life can be like for you with your 'ding-dong head', patched eye, 'almost-par' results and lightweight wheelchair. Even now, your personal experience gives rise to empathy for others; we get the feeling that, if you could, you would make a pitch for better public access for people with mobility issues.♿

...Thanks, too for your bold reference to a 'shit list' designed to put things in order for yourself๐Ÿ’† and for those who may have to go on in life without you๐Ÿ”ฎ.

...Thank you for sharing 20 years of front-line exposure.๐Ÿšถ Your determination to live a full and active life has kept you among us, has contributed much to cancer research and has touched the lives of countless cancer patients, survivors and their families.๐ŸŽˆTricia's Trotters will keep on lighting up the night for as long as it takes to find a cure.

...๐Ÿ™†Kudos to you for building a legacy that has resulted in the establishment, in your own lifetime, of an annual award to be given to others who push research forward as you have been doing for so many years. Congratulations!๐ŸŒŸ

...And finally, thank you for being our positive, funny and loving Tricia through it all.๐Ÿ‘ฉ We will never stop learning from you. ๐Ÿ’จYou are present in the winds of all four seasons and in the neon colours in the world around us.๐ŸŒ Every candle we light connects us to you๐Ÿ”ฅ and each glass we raise calls for a toast to the precious gift of life.๐Ÿท

Love and prayers on a North Sea breeze,
Louise and David๐Ÿ’•

BJ said...

Dear Tricia,
Thank you for keeping us so well informed. We appreciate hearing about all the aspects of your current condition. Its good to know that you are regaining a little independence--everything you are able to do is a big accomplishment.
Good for you for smiting the young eye doctor. You go girl!
Congratulations on the award that will be your tremendous legacy and help so many in the future. The thousands of people who know and admire you will be thrilled to know what you have done.
As always I keep you, your parents and Brandon in my daily thoughts and prayers. You have a wonderful family and I salute all of you.
Love, BJ

ed said...

Dear Tricia,

Thank you for the update, we really appreciate the Tides. Deanie and I keep you in our thoughts and prayers. Tomorrow, it's time to donate blood again,in your honor.

Love and prayers

Ed and Deanie

Unknown said...

Stay Strong and rest well.
You are on a strong team!

Sending more hugs & love, MM

Christa W said...

Hi Tricia, I am thinking of you all the time and I regularly check your blog, so I'm so thankful for your update. I so enjoyed seeing you in August and reminiscing. So many great childhood memories with you! I wish I lived closer to you so I could pop over for a chat and a hug. Your outlook on life continues to inspire me. You are close to my heart and in my thoughts and prayers everyday.
What a well deserved honor to be receiving the up and coming award!
Lots of love,
Christa

Jim & Donna Simpson said...

You are never far from our thoughts.

Natalie and Jamie Powell said...

Thank you for keeping us updated. I think of you often and send you love and prayers. Your story is truly remarkable.

Louise and David said...

๐ŸŒ…Good Morning, Tricia!

I have just lit the candle of hope that brings you close to us at the start of each new day.๐Ÿ”ฅ By our count, you have put the first week of a third cycle of chemo behind you now.๐Ÿ’‰ This morning we hope you are emerging from the initial dark side effects of that treatment and are beginning to experience further relief from the symptoms you have so vividly described for us.๐Ÿ’†

That is our prayer for you, just for today.๐Ÿ™

๐Ÿ’ŒLots of love across the miles,
Louise and David

Marcia said...

Tricia, you are very much in my thoughts today. Hoping that a summer breeze may find you. i am so grateful for your ability to communicate the journey you are on. In some way it allows us to be with you. Much love from Dennis and me.

Auntie Marcia xoxo

Fareeha Khan said...

Hey Tricia - sending lots of love and thoughts your way

Curtis Cutshaw said...

Hi Tricia, dropping by to give you our love and caring today. ������

Love,
Barb and Curtis

Louise and David said...

๐Ÿ’ŒDear Tricia,

๐Ÿ™‹Warm greetings from us in Scotland on this last day in October๐Ÿƒ๐ŸŒพ๐Ÿ‚!

๐Ÿ“…According to our calendar, you are starting a fourth round of chemo treatment today๐Ÿ’‰. As always you are in our thoughts and prayers as we send loads of energy๐Ÿ”ฅ and lots of love๐Ÿ’• your way๐Ÿ’จ.

Halloween hugs.
๐ŸŽƒLouise and ๐ŸŽƒDavid

Sonia said...

Hi Tricia! Just popping in to say hi ๐Ÿ˜ hugs and love ๐Ÿ’š๐Ÿ’›

Sonia

Mireille said...

Hi Tricia! Mike and I are sending you love from New Zealand ...we are at the southern most point today! Sending lots of energy vibes your way. ๐Ÿค—๐Ÿ’œ
M&M