I alluded to the fact that I have not been as prolific a writer lately in my last post. It hasn't been there for me. I realize now that is because I am chewing on some new emotional aspects of my situation. Be careful don't read any farther if you are not ready for some negativity. I think part of it comes from passing the one month mark. Part of it comes from the intense feelings that the Minga brought up for me. Overall I think it is just a new phase in the journey that I am on. It has been a phase of intense, overwhelming sadness. I'll try to relate what it is like here.
I am 41. I have been married to my wife for 18 years and with her for 20. I have two beautiful girls who are 5 and almost 7. I have lived my life as much as I could as though each day were precious and something to be treasured. I have travelled all over running rivers and having adventures. I have sailed far away seas and climbed tall mountains. I have been to places that few other people have been to. I have embodied a commitment to live my life in a way that makes me happy. But I have also lived my life as though I was going to live to be an old man.
Cancer has put an end to that assumption. While none of us really know when we are going to go out, I have had to spend some time contemplating a drastically shortened life. I don't really want to get into the medical aspects of what the survivability of multiple myeloma are, that is not the point. This is about the emotional side of cancer. I've been sitting with the feeling of not having much time left. I am not one to ignore feelings. I know that I have to confront what is going on for me in order to move past it and that has been really hard.
Lets start with the worst case scenario. What if the treatment regimen doesn't work? While this is unlikely it is my biggest fear. So what will happen to me is that I will never get my beautiful athletic body back. Pain will continue to dominate my life my condition will continue to deteriorate until I am sick all the time and then I die. While I fear this, I think it is really unlikely. I don't think it is going to go that way. I don't spend a lot of psychic energy on this fear, but it is there.
Next scenario is different. In this one the treatment works. In a year or so after chemo, a bone marrow transplant, surgery on my hip, I am back on the bike, playing with my kids and post symptom free. The median time for post treatment MM survivors being symptom free according to some statistics is about 3-5 years. So after that sort of time frame I start having symptoms again. I go back into treatment and live in the hell of treatment for some unknown period of time until I die. This is the scenario that haunts me. It is only human nature to want answers to this but the nature of the disease that I have doesn't lend itself to being predictable. And I am a unusual multiple myeloma patient. I have heard stories of MM patients that have gone through the treatment 10 years ago and are still going strong. The part of this that is hard for me is not knowing how long I've got and assuming the worst.
I have been, in my mind, picturing only a year or so of life left and trying to come to terms with that. It has been really hard. The hardest part for me is thinking about not being able to spend much more time with my girls. They are so busy and active right now and I am so feeble that I struggle to connect with them as it is. The thought of not being with them as they grow into young women is really more than I can bear at times. Not being with them for all of those landmarks of growing is so sad for me. I am sad to think that I might not be there to celebrate all of the successes just kills me. To imagine not being there to hold them when they are sad drives me insane with sadness. I am not worried about me. I am worried about what will become of them.
I have spent too much time lately thinking about that. What I have come to realize (all over again) is that I have no control over what is going to happen. Just that act of thinking about all of that is self defeating. I am killing the opportunity to have a good day right now by spending time thinking about what might happen in the future. I thought that I knew better than to go down that road but I found myself yesterday paralyzed with overwhelming sadness. I am definitely snapping out of it now. I realize that the days that I spent stuck in despair are days that I am not going to get back. Yes, it is part of my process to feel all of the feelings. I still will. But I am going to have to be more careful about going down the depression road. It just isn't worth it.
The fact of the matter is that we are all living on a short deadline. At some point we are all going to keel over. That fact is certainly up in my face right now. I am most likely not going to be old and gray with the chickenhawk but I do have today. And I am pretty sure I have tomorrow. And I'll be dammed if I am going to waste any more time. I am going to try really hard to enjoy every moment for the gift that it is.
Subscribe to:
Post Comments (Atom)
12 comments:
spencer et al - sherri and i have been following your blog very closely since you started posting. i'm sure that many of your friends can relate to our frustration at living so far away that we can't just wrap you up under our wings and spend a little time connecting face to face. that said, your candor and honesty has proven invaluable to us as we are looking to turn the page on uor current chapter (i finish residency next year, and i have a fellowship lined up in norcal - adios ohio!). your most recent post finally brough out the urge for me to respond. normally what you say is so real and true and eloquent that i don't feel i have anything to contribute. but today you hit the nail of the human condition square on the head. we are all on the way out, so get busy living. i have friends from other cultures that laugh out loud when they here us talking about retirement. "you people are so arrogant to think that you'll live that long!". Survivors seem to get this - not all, but certainly you. the present moment is really all that any of us ever really have - and those that fully embrace it are the ones that truly live. i only hope to be so lucky.
there's one more thing i want to share with you. two years ago our dear friends here in ohio finally married each other. less than a month later she died suddenly in her sleep from a previously unknown brain tumor. the subsequent outporing from the community was amazing - much like it is for you now. her widowed husband spoke to a pastor about his overwhelming sense of gratitude, and the burden of not being able to properly thank everyone for what they had done for him. "let me tell you something that i tell folks with cancer when they are dependent on friends and loved ones - this is not about you. this is about giving your friends an opportunity to rise to the occasion. it's really a gift to them". He found such comfort, i wanted to share that with you as well.
with much much love and strength from far far away,
tyler and sherri smith
Tyler and Sherri's comment spoke volumes - I just wanted to add essentially the same - to take it one day at a time - don't waste your time trying to write an ending to your story -- spend it on writing chapters.
Spence,
I truly can't imagine all the emotions you must be going through; your family as well.
Personally the "c" word scares the hell out of me. The older I get, the more I hear it.
At your lowest of lows, please don't quit. I realize at times there must feelings of defeat, but you've gotta get back up and keep fighting.
Youre in my heart and prayers, always!!!!!
...facing your own mortality, in light of the circumstances, is nothing negative or unusual...the emotions that are raised are understandably human...& while you're bound to visit those thoughts time to time, it's obvious you're aware not to constantly dwell there...
...all your talk of the outdoors, the running of rivers, pedaling of long roads & climbing of tall mountains is a wonderful part of how you define yourself, but on a deeper level, you are a person who enriches the lives of those around you...
...you are an enabler, spencer, you bring out the good qualities in people so that they can reach their own potential & not everyone has developed that ability...
...so stay on that bike & pedal those circles, bud...sometimes you're strong, sometimes you're not, but just keep a simple focus & keep on going...
I once heard that life is like a restaurant: you place an order and the universe brings what you are asking for!Place your order and GO BIG, don't be reasonable!!!
Love, Pantani.
Yo-What time is it?
Love,
Adam
right now. And yes I did hear you saying that in my ear as I wrote that.
Nice post dude. Just a few random thoughts: When you were kayaking/rafting class IV or V were you thinking about buying the farm then? Or when you were styling that 5.10 pitch, were you wearing a helmet? How's about the back side of Monitor pass last year? Didn't you feign death once or twice but taking your fingers off the brake? You and I and most of our friends have tempted fate on more than one occasion, cheating death as if it were an uninvited player and we did it with arrogance. While I have thought of the horror of what you are facing, about the girls, the C/H, about what you "might" miss, it puts me in the abyss. But when I think of that time I missed the eddy, or experienced speed wobble at 42 (hwy 49), or got caught in a lightening storm one pitch up at Lover's Leap, I feel alive. Tyler and Sherri write well: Every Man dies, not all men truly live. So go ahead an open up a can o'whoop ass. And paddle into the eddy, not the abyss.
Lots of neighborly love,
T
Did I mention that we love you and we think you are kicking @$$ every day? I figure you know it but you haven't heard me say it lately so I just thought I would remind you. We're damn honored to live in your town.
Virtual Hugs,
TOTC
Dude,
Kind of came clear to me why I read and seldom write. "I" haven't got past the sadness. But your blog was kind of us sitting face to face, as dads, nailing the facts and looking in each other's eyes and knowing... hey! we got today and we most likely got tomorrow. Let's do this! No bullshit here that you are waking all of us up to live today fully. There is not a second that when I think of you I automatically think of Sarah and the girls. As dads we put our wife and kids first. Your wife is a mega star and your girls will continue to drive you to get thru this. After all of our adventures, I see you as an awesome dad and husband. Family is healing, kids' youth is healing.
Hug them lots, kiss them lots!
Your bro, ronaldo
Hey Spencer, you gotta stop that negative shit right now! Please try not to think like that. You gotta stay focused and positive! Hang tough guy....
Hey Judi, Dont freak... I have cancer. It is ok to have negative feelings about it. I share what happens with me because I think it is a valuable process, not because I need to be cheered up all the time. Dont get me wrong I love your positive feedback. All I am trying to say is that it is OK to be down or blue or depressed. It is part of the process. In the week that I was feeling that way (last week) I grew a bunch. I came to really realize that I have a choice, to sit around being sad or to get busy living the life I have. I couldnt have got there without the negative feelings. They are nothing to be afraid of. They are something to learn from.
Post a Comment