A year ago, this possibility felt far, far away, with uncertainty and worry.
Today, looking back over the fears, the ups and downs, the fundamental question of whether I would make it or not, equally seem a lifetime away. Part of our survival mechanism as humans to put bad memories behind us as much as possible.
Revising the edits for my upcoming book reminded me of just how rough the journey has been, along with the recognition that I have been one of the lucky ones, with no major long-lasting side effects, and no major impairment to my quality of life. The dark days have to be appreciated in that context.
I remain in awe and wonder about this second chance I have been given. The same sense I had walking out of the hospital one year ago.
Without the stem cell transplant, I would likely not be here today. But I did and I am.
A strong sense of gratitude that I am living in a place and a time when such treatment is possible, such a second chance is given. Reading the horror stories of patients dealing with health insurance in the US, I have a renewed appreciation for Canadian medicare and universal coverage. Last, but not least, the support of family and friends.
So where am I one year out?
- Doing fine on the 4 general measures (no signs of lymphoma, blood marrow working with good blood counts, no significant GvHD, and looking and feeling well)
- Energy levels that allow me to be physically and mentally active, although with the need for more rest than before
- Emotional state that keeps me active and engaged
- Some neuropathy in my feet that impairs my balance but not my preferred activities of walking and biking
- Reasonably strong immune system that allows me to be with people, in small and larger settings, although with some caution
All-in-all, life is good, and for that I am truly thankful.
I continue to reflect further on what this all means to me, to my family and to others, as I work on the conclusion to my book. My story, and the meaning to me and those closest to me, is fairly clear. At the broader level, the meaning is less clear, but does revolve around how we live our lives with others. Some further reflection and hard writing ahead.
Overall, I am more reflective and appreciative, and try to reflect this in my day-to-day life. I always come back to the words of Leonard Cohen, whose words in Anthem have helped guide me through this journey:
Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That’s how the light gets in.
To celebrate my one year anniversary, our son came up to visit so we could all be together to savour the moment – and the relief that all of us feel, as well as the hope that the worst is behind us. We all know what we don’t know – what the future will bring – but avoid dwelling on that, and live and enjoy the here and now.
In terms of the smaller stuff, last week I was worried that the Prednisone phase down had impacted my energy levels, with my biking times being the measure. This week, I had the best times in over a year. Tangible progress.
We have been watching again some films together with our daughter. The Dead Poet’s Society, which captures the private school milieu and pressures to conform all too well, and The Adventures of Tintin, where seeing it again reminded me just how visually beautiful this film is, with some amazing scenes (e.g., the desert into ocean transformation). We also saw The Ladykillers, a 1955 film with a creepy Alec Guinness, as the ringleader of a bunch of robbers who pretend to be musicians as they use an old woman’s house as their base. Some very good moments, a very young Peter Sellers in a straight role, and a nice throwback to more intelligent thrillers than the more action-packed ones of today. Lastly with my son, Waiting for Guffman, an ensemble piece (same group that did Best in Show and A Mighty Wind), a nice offbeat comedy about a small town theatre production to mark the town’s 150th anniversary and the town personalities that come together to put it on.
Not much more to say this week, except to thank all of you for your support and encouragement over the past year and longer.
Now, I can look forward to my next milestones, revolving around family events, with the next unique ones being a planned trip with daughter next spring, and my son’s university graduation early next summer.