Many of you have asked about how to get a copy of Ryan's book - Stop, Drop and Smile. Now the books are ready and you can follow this link http://www.stopdropandsmile.com/ to get one. Ryan's hope was that as we went about our daily challenges , we would stop and take a moment to think about "a guy named Ryan" and that would give us the perspective we needed to get through whatever we were dealing with and maybe even with a smile.
25% of the net proceeds will be donated to Rosedale Hospice, who provided amazing care for Ryan, Tasha and Talyn during Ryan's last few months.
Friday, 28 May 2010
Sunday, 23 May 2010
Blowing out the candles and Lighting up the Night
While the past weeks have continued to be a little too busy, the past week has been filled with lots of birthday celebrations - from cake with my Survivor girls to several voice messages, gorgeouse flowers, calls with people singing on the other end, even Facebook friends wishes, ending in a wonderful dinner with my family (including Tasha and Talyn) on Friday. It was one of my most favourite birthdays ever, despite a very crazy day at work. I received many gifts, the most unique and precious of all - a morning call from my cousin (little sister) Amy, to say Happy Birthday and tell me that now I have a little girl named Mireya to share my birthday with me - she had just been born a few hours before the call!
I plan to just try to keep celebrating all the way through Grandma Gunn's birthday tomorrow, Jack & Davis' birthdays June 4th, to my 3rd transplant 2 year birthday June 9th to Amy's birthday June 13th and Tasha's birthday June 14th. And anyone else's in between! And by then, I'll be off prednisone and probably celebrate that too...
Speaking of celebrations (which often include balloons) - I mentioned in my last post I am the Honoured Hero for the 2010 Light the Night walk for Leukemia & Lymphoma Society. For those of you who have been part of "Tricia's Trotters" in the past, you know that the 5 KM walk is held at dusk and everyone walking gets a balloon that lights up. White balloons for survivors, red for supporters and gold for those walking in memory of cancer warriors. Kind of a cool picture, these lit balloons bobbing up and down along the river (or in the trees in Vancouver!) as the sun sets. A chance to celebrate life. And all funds raised go to research and patient services for blood-related cancers.
I will be at both the Calgary (September 25th) and Saskatoon (September 18th) walks as the Honoured Hero, and would love to walk with you if you are able to make it. You can register on the team by clicking here http://my.e2rm.com/TeamPage.aspx?Lang=en-CA&TSID=273541 and if you can't make it but want to make a donation you can view my fundraising page at
http://my.e2rm.com/personalPage.aspx?SID=2611188
So celebrate the extra day of the weekend tomorrow and I hope to see you in September! Cheers
I plan to just try to keep celebrating all the way through Grandma Gunn's birthday tomorrow, Jack & Davis' birthdays June 4th, to my 3rd transplant 2 year birthday June 9th to Amy's birthday June 13th and Tasha's birthday June 14th. And anyone else's in between! And by then, I'll be off prednisone and probably celebrate that too...
Speaking of celebrations (which often include balloons) - I mentioned in my last post I am the Honoured Hero for the 2010 Light the Night walk for Leukemia & Lymphoma Society. For those of you who have been part of "Tricia's Trotters" in the past, you know that the 5 KM walk is held at dusk and everyone walking gets a balloon that lights up. White balloons for survivors, red for supporters and gold for those walking in memory of cancer warriors. Kind of a cool picture, these lit balloons bobbing up and down along the river (or in the trees in Vancouver!) as the sun sets. A chance to celebrate life. And all funds raised go to research and patient services for blood-related cancers.
I will be at both the Calgary (September 25th) and Saskatoon (September 18th) walks as the Honoured Hero, and would love to walk with you if you are able to make it. You can register on the team by clicking here http://my.e2rm.com/TeamPage.aspx?Lang=en-CA&TSID=273541 and if you can't make it but want to make a donation you can view my fundraising page at
http://my.e2rm.com/personalPage.aspx?SID=2611188
So celebrate the extra day of the weekend tomorrow and I hope to see you in September! Cheers
Sunday, 9 May 2010
The Perfect Storm
In some ways the past weeks have been like a perfect storm - Ryan's final weeks, his passing, celebration of life and the world post-Ryan, coupled with my busiest weeks of the year at work, all laid on top of a growing number of medications to treat GVHD and corresponding side effects and medications to treat those side effects.
And like a storm, or a hurricane, there is nothing you can about it when you're in it but live through it and know that eventually it will pass.
I really didn't know how to comment on the past 6 weeks – anything I write will still understate the actual. I was almost too overwhelmed to write about it, and it has taken me days to finally get it done. Certainly the many indirect or direct “wondering how you are” messages people have sent as helped me finally hit “Publish Blog” ... and so thank you...while I still feel strange giving my health update in the shadow of Ryan’s struggle recently, I will start with my health first for you!
GVHD of the skin was actually progressing more than I realized- the skin "spots" I had first identified actually were thickening and hardening under the skin and reducing my range of motion. So the doctors continued to hit it hard. In mid-March, it seemed every day I was heading to Safeway pharmacy for a new medication. As I mentioned last post, there are really only 3 drugs I am on that are focused on countering the GVHD - prednisone, cyclosporine and PUVA. However, the side effects of each of these need to managed with other drugs, and of course a few more side effects from the secondary line of drugs! The # of pills adds up quickly (currently between 40-44/day) and then I have to go to the phototherapy lab 3 times a week as well as for blood work once or twice a week as the toxicity of the cyclosporine can wreak havoc with your organs so they monitor the level regularly.
People often asked “how are you feeling”? Honestly, it depended on the day, the amount of water I’d drank, how much consecutive sleep I was able to get the night before, and sometimes the timing of when I took the medications...on the outside only my face looks a bit swollen (“moon face” if you want to google it) from the prednisone and I have tremors in my hands. One of the drugs (we’ve yet to figure out which one) is making my arm and leg muscles seize up – to the point of getting up 24 times a night to release the muscle – so I’m on another medication for that. On the inside, it’s impossible to separate side effects of the drugs from the loss and grief I feel about Ryan’s passing and heartache for Tasha and Tayln. Prednisone patients often have difficulty coping and the “extra energy” I felt in 2003 didn’t seem to happen this time – maybe it was offset by the muscle medication, maybe it was offset by sadness. Sometimes I feel okay and happy, sometimes I burst into tears (and am thankful I have an office door) and sometimes I feel like what it must feel to be a little high (with all the drugs I’ve taken over the years I never bothered to try any recreational form so I can’t really confirm this!)
In any case, the "cocktail" seems to be working - I still have areas that it looks and feels like I have extra tendons and my range of motion when lifting my arms for example is reduced, but since the treatment started, no further thickening seems to have happened and there is some recovery of the areas affected. They’ve even started to taper the prednisone dose down (woo hoo!) – not a steroid they like you on high doses for long – while keeping the PUVA and cyclosporine going (no estimated date of concluding those). So as long as it’s working I am happy to manage the unpredictability every day brings for a while.
And I almost forgot...I had the biopsy on my neck graft (separate skin issue) the first week of April – and results a week later indicated no leukemic or other malignant cells or significant infection, so I continue to be on an anti-biotic (what’s a few more pills for the pile!) and the skin is continuing to improve (whew!)
Since last March 2009 when I started back to work a few hours each day, I had gradually been increasing my hours according to a mutually-agreeable plan that includes managing a handful of not-for-profit audit clients, as well as a few internal roles. The hours reached 4 days/week at the beginning of March. As it happens, March, April and May are the months that most of my clients’ engagements run. So work was at its busiest point when the GVHD surfaced and Ryan and Tasha faced Ryan’s last days. It is a challenge to keep all the “balls in the air”, but I continue to work with some amazing people at PwC - staff on my engagements stepping up, and I am very fortunate to have incredible support from the partners.
And while it sounds like all I’ve been doing is popping pills, bloodwork and working, there have been lots of wonderful moments mixed in to the madness, often all in the same day, and I certainly cannot complain. It’s impossible to describe but perhaps just a few words and highlights do it- words: Potent. Exhausting. Beautiful. Devastating. Unpredictable. Highlights:
3/26 Visiting my audit team at Heritage Park in the morning, after lunch - telling my story and observations on nursing at a hematology conference then stopping to visit Ryan at the pad to talk about “the butter” I had felt while in ICU. 4/4 4 AM Ryan Westerman, pilot, father, husband, eternal optimist and Bertuzzi (#44) fan passes through "the butter" into peace after an incredible fight. 5 PM Celebrating Easter Sunday with my mom, dad, my brother, Dana, Davis and Jack, laughing as the boys figure out how to play Wii bowling, golf and boxing "on their own" - high fives and "Jackie it's your turn!" 4/8 Crying and laughing hysterically in the same minute, watching videos Ryan had made in January for his close family and friends, as we gathered after an incredible Celebration of Life 4/14 Agreeing to be the 2010 Light the Night Honoured Hero for Leukemia & Lymphoma Society - Prairie Region (stay tuned!). 4/16 Hanging on the patio drinking cranberry & soda with coworkers at the PwC “end of busy season party” 4/17 Surprising a friend for her birthday, three of us donning wigs to look like her. 4/18 Soaking with Tasha and friends in an outdoor hot tub in a beautiful home in Kananaskis 4/24 Listening to The Eagles with Mom and Colleen one-night-only at MGM Grand in Vegas from incredible seats arranged last minute as a surprise by my resourceful brother (of course the rest of the Vegas weekend stays in Vegas) 4/30 AM Speaking to cancer survivors at Tom Baker Cancer Centre about my story and "the balance" of spending your energy on fighting to live and just living. PM Davis cheering me on as I played (while my forearms cramped!) against Papa in the horse roller ball carnival game on Wii saying "Faster! I love you Tricia!" 5/1 Drawing the "STAR WARS" logo in chalk on the sidewalk in preparation for Talyn's 5th birthday party 5/6 Looking at a picture of Jack in his airplane seat, smiling so wide it didn’t look like him, sent by his dad as he, Dana and the boys were waiting to take off to Disneyland 5/9 Having coffee, touring show homes, laughing and having lunch with my incredible mother, thinking how lucky I am to have her as a friend all my life.
...because that's what this life is - crazy wonderful and terrible moments all woven together side by side that up close seem to have no reason or logic – but in the end when you step back, the pattern or picture makes sense. But by then you are finished creating the masterpiece and are only able to look at it. So I guess while you are living the moments, beautiful one minute and devastating the next, you simply have to trust the bigger plan and live through the storm.
And like a storm, or a hurricane, there is nothing you can about it when you're in it but live through it and know that eventually it will pass.
I really didn't know how to comment on the past 6 weeks – anything I write will still understate the actual. I was almost too overwhelmed to write about it, and it has taken me days to finally get it done. Certainly the many indirect or direct “wondering how you are” messages people have sent as helped me finally hit “Publish Blog” ... and so thank you...while I still feel strange giving my health update in the shadow of Ryan’s struggle recently, I will start with my health first for you!
GVHD of the skin was actually progressing more than I realized- the skin "spots" I had first identified actually were thickening and hardening under the skin and reducing my range of motion. So the doctors continued to hit it hard. In mid-March, it seemed every day I was heading to Safeway pharmacy for a new medication. As I mentioned last post, there are really only 3 drugs I am on that are focused on countering the GVHD - prednisone, cyclosporine and PUVA. However, the side effects of each of these need to managed with other drugs, and of course a few more side effects from the secondary line of drugs! The # of pills adds up quickly (currently between 40-44/day) and then I have to go to the phototherapy lab 3 times a week as well as for blood work once or twice a week as the toxicity of the cyclosporine can wreak havoc with your organs so they monitor the level regularly.
People often asked “how are you feeling”? Honestly, it depended on the day, the amount of water I’d drank, how much consecutive sleep I was able to get the night before, and sometimes the timing of when I took the medications...on the outside only my face looks a bit swollen (“moon face” if you want to google it) from the prednisone and I have tremors in my hands. One of the drugs (we’ve yet to figure out which one) is making my arm and leg muscles seize up – to the point of getting up 24 times a night to release the muscle – so I’m on another medication for that. On the inside, it’s impossible to separate side effects of the drugs from the loss and grief I feel about Ryan’s passing and heartache for Tasha and Tayln. Prednisone patients often have difficulty coping and the “extra energy” I felt in 2003 didn’t seem to happen this time – maybe it was offset by the muscle medication, maybe it was offset by sadness. Sometimes I feel okay and happy, sometimes I burst into tears (and am thankful I have an office door) and sometimes I feel like what it must feel to be a little high (with all the drugs I’ve taken over the years I never bothered to try any recreational form so I can’t really confirm this!)
In any case, the "cocktail" seems to be working - I still have areas that it looks and feels like I have extra tendons and my range of motion when lifting my arms for example is reduced, but since the treatment started, no further thickening seems to have happened and there is some recovery of the areas affected. They’ve even started to taper the prednisone dose down (woo hoo!) – not a steroid they like you on high doses for long – while keeping the PUVA and cyclosporine going (no estimated date of concluding those). So as long as it’s working I am happy to manage the unpredictability every day brings for a while.
And I almost forgot...I had the biopsy on my neck graft (separate skin issue) the first week of April – and results a week later indicated no leukemic or other malignant cells or significant infection, so I continue to be on an anti-biotic (what’s a few more pills for the pile!) and the skin is continuing to improve (whew!)
Since last March 2009 when I started back to work a few hours each day, I had gradually been increasing my hours according to a mutually-agreeable plan that includes managing a handful of not-for-profit audit clients, as well as a few internal roles. The hours reached 4 days/week at the beginning of March. As it happens, March, April and May are the months that most of my clients’ engagements run. So work was at its busiest point when the GVHD surfaced and Ryan and Tasha faced Ryan’s last days. It is a challenge to keep all the “balls in the air”, but I continue to work with some amazing people at PwC - staff on my engagements stepping up, and I am very fortunate to have incredible support from the partners.
And while it sounds like all I’ve been doing is popping pills, bloodwork and working, there have been lots of wonderful moments mixed in to the madness, often all in the same day, and I certainly cannot complain. It’s impossible to describe but perhaps just a few words and highlights do it- words: Potent. Exhausting. Beautiful. Devastating. Unpredictable. Highlights:
3/26 Visiting my audit team at Heritage Park in the morning, after lunch - telling my story and observations on nursing at a hematology conference then stopping to visit Ryan at the pad to talk about “the butter” I had felt while in ICU. 4/4 4 AM Ryan Westerman, pilot, father, husband, eternal optimist and Bertuzzi (#44) fan passes through "the butter" into peace after an incredible fight. 5 PM Celebrating Easter Sunday with my mom, dad, my brother, Dana, Davis and Jack, laughing as the boys figure out how to play Wii bowling, golf and boxing "on their own" - high fives and "Jackie it's your turn!" 4/8 Crying and laughing hysterically in the same minute, watching videos Ryan had made in January for his close family and friends, as we gathered after an incredible Celebration of Life 4/14 Agreeing to be the 2010 Light the Night Honoured Hero for Leukemia & Lymphoma Society - Prairie Region (stay tuned!). 4/16 Hanging on the patio drinking cranberry & soda with coworkers at the PwC “end of busy season party” 4/17 Surprising a friend for her birthday, three of us donning wigs to look like her. 4/18 Soaking with Tasha and friends in an outdoor hot tub in a beautiful home in Kananaskis 4/24 Listening to The Eagles with Mom and Colleen one-night-only at MGM Grand in Vegas from incredible seats arranged last minute as a surprise by my resourceful brother (of course the rest of the Vegas weekend stays in Vegas) 4/30 AM Speaking to cancer survivors at Tom Baker Cancer Centre about my story and "the balance" of spending your energy on fighting to live and just living. PM Davis cheering me on as I played (while my forearms cramped!) against Papa in the horse roller ball carnival game on Wii saying "Faster! I love you Tricia!" 5/1 Drawing the "STAR WARS" logo in chalk on the sidewalk in preparation for Talyn's 5th birthday party 5/6 Looking at a picture of Jack in his airplane seat, smiling so wide it didn’t look like him, sent by his dad as he, Dana and the boys were waiting to take off to Disneyland 5/9 Having coffee, touring show homes, laughing and having lunch with my incredible mother, thinking how lucky I am to have her as a friend all my life.
...because that's what this life is - crazy wonderful and terrible moments all woven together side by side that up close seem to have no reason or logic – but in the end when you step back, the pattern or picture makes sense. But by then you are finished creating the masterpiece and are only able to look at it. So I guess while you are living the moments, beautiful one minute and devastating the next, you simply have to trust the bigger plan and live through the storm.
Sunday, 2 May 2010
For Ryan
Not sure where to begin. Ryan's last weeks, his passing and celebration now seem such a blur of incredibly terrible and wonderful moments. Just 4 weeks later, things seem a little blander now. I know he's still around - I still feel his energy in various places and moments and even yesterday at Talyn's 5th "Star Wars" birthday party, visiting with some of his close friends, we felt his smile on us. But I would have preferred one of his big hugs.
As most of you have made the trip over to Tasha and Ryan's blogs (links to the left) over the past while, you will know all about Ryan's passing April 4, 2010. You may even have come to feel like you knew him despite not having a live introduction. And quite possibly you will have been inspired by Ryan and his family, taking on immense challenge with smiles and gratitude. He might have left a little of his energy with you. That was certainly his hope - to leave the human world having simply but positively affected others. He no doubt succeeded.
His celebration of life on May 8th was a reflection of who he was. A guy who approached life with a smile, said what he meant and acted as he said. Colour was everywhere...Starbucks coffee served, laughter, smiles, stories shared of good memories from his close friends and family. Even a pink converse watermark behind the service program and Radiohead playing as you walked out. And of course, the remarks made by Talyn. I had just spoken and was to stay close in case Talyn couldn't speak after all. But he marched up to the front, pulled out the step stool, adjusted the microphone downward with a swift motion and began to talk - a little about the tumour and how his dad told funny jokes. Not a beat missed. Honest and funny, just like his dad. Ryan no doubt was grinning the whole time.
It's difficult to absorb everything that has occurred in the past few months but impossible to communicate. As many of you have heard me say, I feel like our lives are like canvases that receive splatters and drops of paint when we experience, engage and absorb life fully. I am thankful to Ryan for providing me with a whole new layer of texture, colour and shape. I am happy that he is at peace after such a long battle, but we all dearly miss and will continue to miss his spectacular paint. Love ya bro.
As most of you have made the trip over to Tasha and Ryan's blogs (links to the left) over the past while, you will know all about Ryan's passing April 4, 2010. You may even have come to feel like you knew him despite not having a live introduction. And quite possibly you will have been inspired by Ryan and his family, taking on immense challenge with smiles and gratitude. He might have left a little of his energy with you. That was certainly his hope - to leave the human world having simply but positively affected others. He no doubt succeeded.
His celebration of life on May 8th was a reflection of who he was. A guy who approached life with a smile, said what he meant and acted as he said. Colour was everywhere...Starbucks coffee served, laughter, smiles, stories shared of good memories from his close friends and family. Even a pink converse watermark behind the service program and Radiohead playing as you walked out. And of course, the remarks made by Talyn. I had just spoken and was to stay close in case Talyn couldn't speak after all. But he marched up to the front, pulled out the step stool, adjusted the microphone downward with a swift motion and began to talk - a little about the tumour and how his dad told funny jokes. Not a beat missed. Honest and funny, just like his dad. Ryan no doubt was grinning the whole time.
It's difficult to absorb everything that has occurred in the past few months but impossible to communicate. As many of you have heard me say, I feel like our lives are like canvases that receive splatters and drops of paint when we experience, engage and absorb life fully. I am thankful to Ryan for providing me with a whole new layer of texture, colour and shape. I am happy that he is at peace after such a long battle, but we all dearly miss and will continue to miss his spectacular paint. Love ya bro.
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