Sunday, March 3, 2013

What Do You Say?

On Thursday, February 21, I had the unequivocal words spoken to me that changed the course of my life spoken to me in stark terms that left no interpretation: “your pathology says you have acute myeloid leukemia.” The diagnosis of a blood cancer is not something I ever expected to get. It’s not something I was prepared to absorb and it certainly wasn’t something I wanted to be explaining to people over the phone. I just knew so little about it and my learning curve is still so high.  Going from a live-and-let-live mentality to fighting for my own life in such a short time has thrown me for a loop, to put it lightly!
Trying to explain the details to loved ones and family has proven a challenge as well. I don’t know what to say other than the obvious and from the receiving end, what do you say back?  I’ve struggled with it because as uncomfortable and downright frightening as it is for me, the discomfort on the other end of the phone or the stark look, often with tears, on a face is something that cannot betray the confusion and inner conflict of what to do or say next.
I’ve been pretty open about saying that I give a ‘pass’ to everyone in getting over the shock.  Shoot, I’m still finding myself wondering what’s going on. I’m finding myself crying out of gratitude for simply being alive, for the multitude of little kindnesses shown me, for no reason at all really, yet I haven’t fully taken this all in and thought about the stark fact that I have a life-threatening illness. I’m just plugging along as I still feel just fine.  It’s such a cognitive dissonance! So, what should you say when a ball like this gets dropped on you?
I’ve stewed about this over the past week or so after having communicated to so many people and the thing that comes back to me over and again is simply this: be honest. Everyone has their own way of dealing with shock and far be it for me to tell you how you should respond. Once the shock has sunk in, what I can tell you that I need is the same thing I wrote on day 1: just be there for me in whatever way you can. That doesn’t have to translate into anything other than what *you* feel comfortable with.  I have no judgment or expectations on what someone should or shouldn’t do. Just be there for me the same way you would want me to be for you if you were in my hospital-issued traction socks. A Starbuck’s extra hot peppermint mocha is great, but not everyone has the time, wherewithal, or is in town to stop by with one, so a smile, kind word, or a facebook post or photo with something that makes me smile can make all the difference.

I did a little surfing around to find out what is appropriate because let's face it, Emily Post doesn't exactly address this one head-on.  You can check out American Cancer Society - Ways to Respond for some good ideas as well as this list of do-nots!
I so very much appreciate the outpouring of kindness, sympathy, and real support from everyone that it has quite literally brought me to tears more than I care to admit. For those of you who are survivors yourself or caregivers of them, I can’t begin to tell you how much your very meaningful and substantial words of support have carried me and will continue to buoy me when things actually take a downturn, because we all know they will at some point.
Without belaboring the point, I hope that should you make a trip to the VA and see me sans-cheveux wearing the “Cancer Sucks” beaning my sister has ordered for me covering my impending bald pate, don’t be repulsed or join the pity party. I won’t be throwing one (and call me on the carpet if I do!).  I may not look good, I may not feel good, but the fact that you’re here for me will make all the difference in the world. Knowing that I have allies, people to hold my arms up when I can’t lift them will be what it takes. Be upset in your own way, but please help me be keep positive. If there were a single common thread I’ve heard from every cancer survivor I've spoken to since this ordeal has begun, it has been that keeping a positive outlook was what made all the difference. And while I do not consider myself a religious man, I do have faith – in you  my friends, family and extended circle of on-line acquaintances, in the medical team that is working diligently to bring healing back to me, and of course, I do believe in me.  An on-line friend of mine I've known for years sent this video to me and it encapsulated what I needed to hear at the time and they're what continue to need. The words jumped out of the screen and were just what the doctor ordered (although it wasn't on my chart!).

Thanks well...stay strong!