June 13, 2013
6 years. It's been six years since I was told my body was trying to kill me. 6 years since I tasted the poison that saved my life and stole a bit of my innocence. 6 years since I saw my husband's fists ball up and knuckles turn white as he said the words, "honey, you have cancer". 6 years. It's a long time. A very long time. And yet, "objects in the rearview mirror" and all that.
Like any "thing you go through" you don't really understand it until you walk the path. You assume. You suppose. You empathize. But you dont know. Not really. And i can say that. I can own it because having watched my father endure chemo I guess I figured I knew.
I didn't know.
There was a time, post treatment, post celebration, post-it-all, when I thought I would never be okay. When I touched my lymph nodes ritualistically. When I googled "blood cancer recurrence" daily. There was a time when I wondered if the collateral damage was too great. When I believed surviving cancer was easier than surviving surviving. And that time wasn't that long ago.
The following is parts of an email I sent to a friend while my treatment was going on. I post it here, now, not because it is uplifting - it isn't. It's horrid. And painful to read. I post it not because it glorifies surviving because it doesn't. It scrubs naked the awareness ribbons and celebrations. I post it now because of the wonderful simple beautiful fact that I forgot.
I forgot how bad. How hard. How ugly and fetid. And you, you who are going through it...who have gone...who are at the start...who are at the finish...who are cheering...who are angry...who are broken and empty and broken, you need to hear this.
Do you hear this? I forgot.
And That. Is. Beautiful.
And evidence of the awful grace of God.
These treatments are getting more difficult. I take much longer to even begin to recover.
What’s it like? It’s awful. it’s awful on so many different levels. Right now one of the most troubling things is my breathing. It is more and more labored and painful with each treatment. To compensate, I find I’m taking little shallow breaths which apparently isn’t good and can lead to pneumonia. I try to take deep full breaths but it hurts so much … like when you breathe in really, really cold air – sort of like that. Every now and then I spontaneously gasp and my chest spasms. I’m wondering if I’m holding my breath … I don’t know. The doctor has given me an inhaler but I don’t really think it works. I wondered if maybe it has nothing to do with my lungs and maybe it is like a reflux inflammation thing. I’m taking boatloads of prilosec to try to fix that. It’s just hard because it is every breath. Every breath is painful.
And I have so little wind! I can’t climb stairs without resting immediately after. I can’t walk too far without sitting down. Even up and down the stairs to the basement I have to sit for a minute. I feel like I used to after a really hard workout. But all the time. It’s nuts. I’m so weak.
The nausea is getting worse with each treatment. In the beginning, I had none. Now I struggle keeping food down. Thanksgiving is coming and I have treatment the day before. That should be interesting. I’m probably the only girl in America that is going to lose weight over Thanksgiving.
The fatigue is unexplainable. Now it lasts so long that I don’t even get a boost of energy before my counts start to drop and I feel it again. I thought I’d been tired before in my life but man oh man, this fatigue … the only thing I can think it is like is when depressed people say they “can’t even get out of bed” … that’s how I feel. Sometimes I lay there for hours trying to convince myself that I don’t have to go to the bathroom because I cannot summon the energy to get up.
I can’t sleep. That started a handful of treatments ago – possibly a side effect of the chemo-induced menopause. I don’t know but I sleep HORRIBLY … even worse than I used to. I take ambien to help and it does … sort of. I fall asleep but I don’t stay asleep. I usually wake up around midnight and am up for a good long while. My sleep is fitful and I spend half the night throwing the covers off and half of it pulling them back on. Hot cold hot cold hot HOT! cold. Frustrating.
I think what’s most frustrating is that each treatment really has been different. This time, for example, I really didn’t get the sore mouth I have almost every other time. But my bones ache and I feel brittle. It’s just hard to plan when you don’t know if you’re going to get kicked in the crotch or punched in the tits. Figuratively, I mean.
Everything about me is ugly. My skin color, my toenails, I think I’m losing my fingernails too now, my nose runs all the time, my hair keeps falling out, I have no muscles left in my whole body .. no tone and definition, my teeth look horrible and I smell bad. Well, I think I smell bad. People have told me they can’t smell me but I think I smell like chemo. I can smell it on me. I look ugly, I feel ugly, I smell ugly. I have a constant HORRIBLE taste in my mouth and there is nothing that can be done about it. I try everything but you can only eat so many mints or cinnamon tic tacs before your tummy puts an end to that. My doc suggested eating with plastic utensils and maybe that will help so I’m trying that but it makes me feel so ....disposable. Water tastes like chemo. I have to put the juice of at least half a lemon in each glass just to choke it down. I have a hard time swallowing and I don’t know why. Also I have terrible gas – I belch and belch and they aren’t the cool, loud kind either … they hurt SO BAD …
I actually miss my periods. At least if I had them I would still feel female in some way. I don't feel female anymore. I don't feel like a person. I feel like a thing. I'm a thing.
At the same time of all this awfulness, I really am grateful for it. I feel like I’m being prepared for something, like I’m being refined. You know when gold is refined they put a big hot something under it and all the impurities float to the top where they are scraped away. Maybe that’s what’s happening to me … maybe all the junk is being boiled up and soon someone or something will come along and scrap it all away.
Or not. Maybe it just is what it is. Maybe there is nothing to learn.
How does it happen? How does a girl who literally couldn't run more than a block without feeling like her head was going to explode off her shoulders run TWENTY - SIX POINT TWO miles? Insert all the funny and clichéd lines here. Such as.... One mile at a time! and.... Slowly! and... With a great deal of Body Glide! Yuk to the Yuk!
I was in Seattle this year for the 3 Day for the Cure when I decided to sign up for the Walt Disney World Marathon. I was also feverish and delirious from some sort of bug at the time and I don't know that I was thinking too terribly well. I remember talking to my coach soon after and asking him if he thought I could and should do a marathon. I remember listening to him tell me all the reasons I could. I remember him going through the typical, "It's going to be a lot of work" speech and kicking around the idea of me doing another ½ marathon or continuing to do Half-Ironman triathlons. I remember him landing squarely toward the end of the conversation on "Yes, I think you can do a marathon." To which I said, "Good. Because I already signed up."
Which is typical. All my life I've made decisions first based on what I want to do -- then later figuring out the road blocks and ways around them. I know that's not how everyone makes decisions (reference: The Hub) and I know my method of making decisions that way can be somewhat unnerving to others (reference: The Hub, still). But it usually works for me. Usually .
Here are some of the things I learned:
LESSON ONE -26.2 miles is REALLY far.
Now, I know this may seem obvious but it sort of surprised me how far 26.2 miles really is. A few weeks prior to the marathon, I went to mapmyrun.com and created a starting point at my house and drew a line out 26 miles in many different directions. It amazed me. I know most of my readers aren't from around here but, as the crow flies, from my house to the Kansas City International Airport is only 20.1 miles ... and that drive takes me about 40 minutes. Forty minutes! And, since I'm not a car, nor a crow, it takes me a really long time to run 26.2 miles. Hours. And hours. And of course I knew it would take a long time but I didn't realize it would FEEL like such a long time. I dunno, maybe since I made the jump from a sprint triathlon - which has a 3.1 mile run, to a half-ironman distance triathlon - which has a 13.1 mile run, maybe I thought the jump to a 26.2 mile run wouldn't be that big a deal. Which just goes to show you can't underestimate the power of a little forethought (cue The Hub silently cheering this realization). Because even though I worked really hard at not thinking negatively during the race, I admit to having a moment at mile 17 when I said out loud "Wow. This is dumb." And the man next to me huffed out, "You can say that again." Unfortunately, I actually couldn't say that again - because it took too much oxygen.
At the same time, I have to be honest and tell you when it was over, it didn't really seem to take all that long. I finished and thought. Huh. I'm done! And this is pretty much like my life. There was a time when I couldn't imagine being over 40 and now that I'm here I'm all like : Huh, that didn't take long at all. So maybe the lesson here is - Don't make decisions about what you are going to do based on what it feels like the day you sign up. Instead, trust the finish line will show up sooner than you think. Don't wanna go back to school because you'll be 45 when you're finished? Guess what? You'll be 45 anyway - and sooner than you think. Don't want to start losing weight because it's going to take you 6 months to reach your goal? Guess what? Summer is coming anyway. Don't want to start reading this blog post because it runs way down past the screen? Guess what? I hear ya.
LESSON TWO - You don't have to run the race before you have to run the race.
one that may seem obvious. The running lesson here is simple - do your workout today and race day will take care of itself. Back in November, I had a 14 mile run I needed to get in one Wednesday morning. Thankfully, I was in Florida and I could run outside. My sister decided to be route support (what can I say? I get used to those fully-stocked pit stops every 3 miles on the 3 Day) and ride alongside on her bike with water and nutrition for me. All seemed good but there was nothing in me that day that wanted to run 14 miles. What's worse, I started off and felt super-duper awful. I was running about a minute per mile slower than my usual pace and the miles were dragging by mercilessly. When that happens, the negativity starts to creep in ...not just about that run and that day but more sinister, about race day. Thoughts bounce around in my head like bumpercars, slam into my psyche and throw me off my game. Thoughts like "How the hell are you going to run 26.2 miles on race day?" And "Even if you do finish, you'll be the last one" and "How the hell are you going to run 26.2 miles on race day?" and "Wow, You are miserable at this!" and "HOW THE HELL ARE YOU GOING TO RUN 26.2 MILES ON RACE DAY??" And on and on it goes.
And on that day, I just knew I had to put a stop to it. I had my support team there and by golly, I was going to use it/her. So I yelled out to my sister peddling along behind me, "Beek! Your job today is to make sure I run 14 miles ...not 13 or 13.5 but 14 ... 14 is the number. Got it?" "YOU KNOW IT!" she called back. And then, because she's a perceptive one, I hear ... "You okay up there?" And I told her I was hurting. Told her I wanted to quit. Told her that I just didn't see how I was going to be able to run 26.2 miles. "Beek," I said, "How am I going to run 26.2 miles on race day?" And you know what she said?
"By running 14 today."
The life lesson follows. Seeing the end is good - necessary even - but don't get all caught up in it. Today just do what you need to do today. You know how you grow your business in the next 5 years? You return that phone call today. You know how you move from this lousy job to a great one in 6 months? You write your resume today. You know how you repair the broken relationship with your family? You be nice today. Do the baby steps. The rest will fall into place.
On a side note, before each long run for the rest of my training I would call my sister and say "Beek, how am I going to run 26.2 miles on race day?" And she'd say "You're going to run X miles today!" Of course, being her, on race day last week as we loaded into the car at 2:30 a.m. I turned to her and said, "Hey Beek! How am I going to run 26.2 miles today???" and she said "Hell if I know - that's really far." Then again, she hadn't had her coffee yet.
LESSON THREE - Everyone starts and finishes at the same place.
There were a reported 15,000 of us that started that race. 13,400 finished. We all crossed the same start line. We all crossed the same finish line. We all ran the same course. For some, it wasn't easy. Some stopped at every photo op. Some chose to run the tangents and probably ran a little less. Some needed medical help. Some walked the majority of the race and some ran so fast you'd swear they cheated. But we all crossed the same finish line.
It's like life. We're all born. We all die. We all travel through life together. Some have a harder time and some have an easier time but there is a beauty to knowing we are all in this together. And it is your choice whether you see your fellow participants as competition or comrades. It is your choice to be inspired or frustrated. It's your choice to groan or cheer, wave or sigh, pump your fist or pump your legs. Your choice.
LESSON FOUR - Everyone has gas.
Self-explanatory. Both for marathons and for life. Deal with it.
LESSON FIVE - Nothing takes the place of patience.
The week prior to the race I was flitting all over Orlando looking for all the things that I needed - gels, new compression socks, the right top, etc. Every running store The Hub and I went into asked if we were doing the marathon. With 15,000 signed up for the full (or the "whole" as my mom calls it) and 24,000 signed up for the half, chances were pretty good that people entering their store were running. In one store the shop owner gave a little advice as we left loaded with gels and recovery brew. "Just be patient," he said. "It's a long way." Good advice. Great advice actually. Because (contrary to what my sister said) it's actually very simple how you run 26.2 miles on race day - you run 1 mile ... 26.2 times. There's no shortcut (although I do think it was cruel to run us right past the monorail station) and there's no way around it: 26.2 miles is 26.2 miles and if you are going to finish, you have to run every one of them. And sometimes, it's a grind.
Disney does an amazing job of providing entertainment along the way. From characters to karaoke, music to magicians, cheerleaders AND marching bands - they had it all. And still, that race can be a drag. Once or twice I tried to break the monotony by cracking a joke or two. Only to find out that not many people share my same sense of humor. (I still can see the dismayed and confused look on the face of the supporter who was holding up a giant sign "GO SALLY!" when I ran by and said "Hey, my name's not Sally but thanks anyway!!"). And there were a few times when I heard that shopkeepers words in my head ... "just be patient" and I would downshift my thoughts and do just that.
Such is life. It's fabulous and entertaining and hard and challenging and awe-inspiring and breath-taking and hysterical and heart-breaking ... most of the time. But sometimes, it's just a grind. Sometimes we just have to keep moving forward. Sometimes things don't happen as fast as we want, take longer than we want, bore us to tears ... and that's okay. One my favorite sayings and one that floats repeatedly through my head during long miles is "Keep moving, time takes care of the rest." And now, thanks to that Orlando shop owner and my experience at Disney I've added: Just be patient. Mickey may be around the next corner.
LESSON SIX - and maybe the most important lesson of all
Nothing beats the power of a good support team.
And yes, I made the shirts.
I feel a little bit like Miss America after her reign, moving slowly down the runway one last time prior to giving up her crown. Except, of course, it wouldn't be a crown but a pink boa, coconut bra and crazy knee socks.
4 years. It's been an amazing 4 years. In those 4 years, I've said my share of words. I've held the mic and the attention of the room probably more than I should have, I've yammered and told stories and repeated jokes and talked and talked and talked. But I'm hoping you'll indulge me one last time to simply say,
Rewind the clock back to December 2006 … I was bald and broken and unable to breathe on my own. I'd been hospitalized due to complications from my lymphoma treatments. I was unable to walk across a room and my skin was a strange ashy color. Anyone who entered that hospital room could plainly see something was very wrong. Every visitor I had -friends, family, doctors, - all had the same look wash over their faces the moment they laid eyes on me. A look of sad compassion. Of realization. Of pity. In those moments, it was so obvious what cancer had taken from me. My health, my hair, my fully-functioning lungs, my strength, my rosy cheeks, my appetite, and my future. But for all those recognizable things chemo and cancer had taken from me, the most precious were the things no one saw.
Years and years ago, when I was in high-school, we had an old push mower with a pull cord. I had a date with that lawnmower every week. And every week, it gave me fits. One particular week, I stood in the barn and pulled and pulled and pulled on that old ratty cord but the mower just wouldn't start. I checked the gas, put in oil, adjusted the choke and kicked the blasted thing repeatedly. Bupkis. No matter how hard I tried, or how many times I pulled, the vurrump, vurrump, vrumump never turned into a varooooom!. Eventually I called my dad at work to break the news. "It's completely dead." I said. "It won't work. It's broken."
"Totally broken?" my dad asked.
"Totally broken." I said, hung up the phone and returned to watching The Young and the Restless.
When my dad came home he went immediately to the barn. I followed. Convinced the lawnmower was a goner, I rattled on beside him as he yanked the cord, checked the gas and adjusted the choke. "Yep," I said, "It's broken. Guess we'll have to get rid of it. Guess we need a brand new one. Probably should get one of those power ones. This one is definitely broken. Definitely useless. Definitely." On and on I went while my dad messed with the mower. And, what do you know, it wasn't too long before that bastard machine sprung to life.
"Spark plug," my dad yelled over the noise of the mower. "She's still good ... just needed the spark. Get to mowing, Kiddo." And I did. And it worked just fine. Of course it did. It wasn't broken. Everything was still there, but without the spark, it was useless.
I hate cancer for a lot of reasons. I hate it for what it does, I hate it for what it causes, I hate it for Jen, and Alison and Bridget and Becky and Daddy and Grandma and Linda and Jackie and Anna. I hate it because it's scary and frightening. I hate it because it's sneaky and ruthless. I hate it because it isn't fair.
And I hate it because it took my spark.
Just a few short months after my hospitalization and through the miracle of modern medicine and despite our fears, I was recovering. My scan was clear. My hair was growing. My lungs were breathing, my stamina was returning and my appetite - well, that homecoming was fast and furious. I was recovering. But I wasn't well. I may have looked okay on the outside but I wasn't okay. And as much as I tried to be okay, something was missing. Everything I once cherished and loved about the real me, the inside me, the me I enjoy the most was gone. Bupkis. I could varrump but I couldn't vroooom. And to be even more honest, I thought I was a goner for good.
Cancer took my spark. And you gave it back.
Thank you. Thank you for everything. For every opportunity. For every laugh. For every mile. For every high five and fist bump. To my partners at the event, thank you for listening to me. Thank you for playing "Greatest American Hero" again and again. Thank you for tolerating my calls to the 1-800 number when I couldn't find the command center. Thank you for shuttling me around the route and thank you for scheduling "emergency media calls" at exactly the right time. Thank you for being my official and unofficial writers and thank you for letting me steal all the good jokes and claim them as my own. Thank you for reminding me over and over again what city we are in and for more than my share of Executive stickers. Thank you for understanding the importance of colored index cards.
To the amazing walkers and crew members of the 3 Day for the Cure, thank you. Thank you for walking with me. Thank you for fixing my back so many times. Thank you for sharing your stories with me. Thank you for letting me cry with you when you told me about your fears and losses and worries about your next scan, next appointment, next test. Thank you for trusting me with your hopes. Thank you for trying to scan my credential again and again and for giving me about 100 route cards per event. Thank you for giving me extra potatoes when I asked and for laughing at the dumb jokes I tell again and again. Thank you for giving me a space to heal and to hope. Thank you for welcoming me to your event each weekend and making every city my favorite city. Thank you for inspiring me. And for truly living the cure, not just walking for it. Thank you for never giving up.
And to the amazing organization I've been honored to represent for the last 4 years. Thank you. Thank you for giving hope. And for providing a place for others to hope and shed the boat anchor of impotence and helplessness. Thank you for the sacrifice you all make to this cause. Thank you for not only doing what you can but for doing what others can't.
The 3 Day has been some of the best moments of my life.
Thank you. I will always be grateful for the spark.