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.
