Sunday, April 27, 2014

Holding Hands

Below is the conversation I got to have with the Livestrong leaders today (in video form)

I don’t remember what it was like to be born… but it can’t be much different than the day being told I had cancer felt. A world that I lived in which felt relatively safe and quiet and it changed very very quickly with unfamiliar noises and lights. Something shocking comes into life, leaves you crying, confused and looking for a hand to hold… And when the birth process goes right, when it’s a good day, you find that hand quickly and hold on for dear life.

I was a kid who’d never called in sick to work in his entire career. I’d missed 5 days of school from kindergarten to college because of the chicken pox. Then while in the middle of a work birthday lunch  I woke up in an ambulance where medical staff and my coworkers were standing over me telling me I’d had a grand mal seizure and we were headed to the emergency room… (I’ve apologized a few times for ruining her birthday).

CAT scan, MRI, this doctor, that doctor, admission… it was all just a blur but enough to where the very first thing when I was told I had something going on my brain, possibly a tumor, I ripped the IV out, put on my jacket and started walking out. Coincidentally, the ambulance guy was walking in as I walked out and stated “well you look better than the last time I saw you”. I was walking through the parking lot when my friend Troy who was showing up was walking in and said “what are you doing?,” and I said I was leaving, he redirected me back in when he found out my checking out was less than valid.

This was just a couple of months after I turned 30… and I couldn’t help but think “man life goes down hill fast after you turn 30.” There was no holiday attached to that weekend but because it started on a Friday afternoon the biopsy wouldn’t be till Monday morning… and I learned a whole new definition to “long weekend.” I am a guy who jokes around a lot so when the doctor when he showed me on the MRI that it was possibly  a brain tumor, I told him to rub some dirt in it. He looked at me, looked back at the screen, looked back at me, looked back at the screen and said, “and if you look here…”  The last thing I’d say to him before he would do the biopsy was “I’m going to give you a piece of my mind.” My friends following my queue of dealing with stress with humor would take some good shots about how this was “rust from lack of use,” “that I’d proved them all wrong, I did have a brain” and perhaps my favorite in response to the fact that I’d been moaning about being officially old since I was 30, someone saying, “only the good die young, you’re going to live forever.” Whether the hospital staff was impressed or depressed by my anxiety coming from sitting in a hospital room, they gave me permission to run on the hospital grounds with a friend the night before the biopsy. This time the IV was still in there and the simple truth is I snuck off and got an 8 mile run in because I had to get out there before the biopsy the next morning.

 The biopsy that was supposed to take a couple of days took almost 3 weeks… and I’d say the suspense was killing me but if something was killing me, it probably wasn’t the suspense.  The jokes kept coming as I read the pamphlet from the neurosurgeon about functions of the left temporal lobe… it could affect memory and language skills and a few people requested that we put in a mute button. It could affect sexuality and so I thought it was a good incentive for people of both genders to be excited… but be warned I’m not any good at being big spoon.

But the simple truth is that while those jokes made me smile then and make me smile now and they were probably a better coping mechanism than hitting the bottle would have been… they hid the fact I was denial. An old friend Nicole who is a doctor was coming to check out Austin coincidentally around the time this all started. I had a driving restriction so she took me to the appointment where they’d remove the biopsy staples… and where we’d do follow up seizure scans.  There I would hear that I had diffuse astrocytoma, a rare brain cancer that  has no known dietary, lifestyle, genetic or environmental components. As I made one more joke about how this prove I  a total headcase she pointed out something that most people had missed since they were laughing at the jokes, “she said, you don’t have a positive attitude, you have a casual attitude.”

By the kindness of the universe, the very next day, someone from my running group, Andy Stewart, a friend of this funny looking guy named Doug Ulman told me about Livestrong. I would make the call while he was there. There would be some questions, some suggestions and I was both grateful and annoyed with the navigator on the phone. They were talking about psychosocial things and emotional things and family and caretakers and blah blah blah. Boy were these guys missing the obvious, how had they missed the memo that the only thing that mattered about cancer was dealing with the medical stuff and the bills?

This was shortly before Thanksgiving but the day before the holiday, something arrived that I will always be grateful for, the Livestrong guide book. I would spend a lot of that holiday weekend reading that book for tips, for clues and obviously for the cure to cancer because that had to be in there somewhere. But somewhere out of all the things that were in there, the simple, elegant and beautiful livestrong mantra shouted at me, unity is strength, knowledge is power and attitude is everything. Perhaps because it was an echo of the casual/positive attitude remark… perhaps because it was finally time to wake up and realize oh yeah I have fucking brain cancer and we’ve gotta figure out a way to kick it’s ass.

I was already training for the Livestrong marathon and while I had originally asked for a refund, I said no, I’m running this thing. With guidance from the navigation center and friends, every single one of my doctors changed. This had started in the ER and it was just random draw and while to each his own, I wanted a team that was about action and the calls started and I would find a neuropsychologist who realized I cared just as much about preserving brain function as I did about the ability to keep breathing, I found an oncologist, a neurologist, a physical therapist, a neuro surgeon who were all athletes, all runners who knew that continuing to train was probably  just as good for my brain, my heart, my soul as anything they could possibly do. One of the assistants finally relaxed enough to joke, “well maybe what’s least stable about your brain is how much you’re running.” There was times they had to make me take a few days off running because of the risks like after my wada test where they put parts of my brain to sleep to see how risky the surgery might be. They went in through my groin wound it all the way up to my brain, proving what we’ve always known, that men’s groins are connected to their brains, it takes less than seconds for them to communicate and we know which one puts the other one to sleep. I had to stop running for a few days and when I got back they wanted me running next to someone and not so hard so I ran next to a football guy we call Big from the workouts and I told him that if I suddenly collapsed, he’d have to call 911 and put pressure on my groin. With a smile on his face, he said you know if to save your life, I have to put pressure on your groin, you’re probably going to die right?

I put off the brain cancer surgery for a few weeks after all the tests were done and ran the Livestrong marathon in Boston Qualifying time, still my fastest one cause I’ve ever done if they are going to slice your brain open you don’t slack off and it helped that there were many good friends including one of my doctors cheering along the course. And while if life ended on athletic victories alone, we could say that’s a happy story… let’s just say that I got some things horribly wrong. The person I was married to at the time, the Livestrong navigation center had suggested that I do some things, most of which I did not do. They suggested I go to counseling, that Kiana attend counseling since obviously my scar is fairly visible, that I talk to someone else who had been thorough the same diagnosis. Stacey Conley of the Austin marathon thought I should join the Livestrong survivor team which I blew off very quickly because this was all before the cancer surgery so how could anyone call me a survivor?

The surgery occurred as successfully as possible. But then my wife left… I fell apart… And somehow the navigator called as a check up and I signed up for Livestrong’s cancer and relationships class, cancer and parenting class, the survivor class. There would be simple things I’d missed like “don’t tell your child that cancer is a booboo” since they use that word for everyday things. The survival class was all men so I could still pretend to be manly while being a little more forthright about the emotions that come with it all. And perhaps, a basic truth of life that I’d somehow managed to miss until the cancer and relationship class, you have to work on the relationships you want to keep.

And that attitude I learned from Livestrong is my everything. I thought the mantra that attitude is everything was wishful thinking, a silly mantra of comfort in denial of reality. But 3 and a half years into this journey, I’m not sure anything in my life is more true. Because none of us like the idea of dying but there have been people who I’ve met through Livestrong who die from cancer with a better attitude than many people live with from day to day. There have been times where I woke up in an ambulance again, where the shocks were apparent and I was again just looking for a hand to hold. There have been times I was over eager and over read a report where I thought maybe cancer was gone. But it wasn’t and I was disappointed but friends from Livestrong reminded me that hey if it’s stable, the days above ground are great ones.  Statistically speaking, I’m not likely to make 40. But as my old math teacher used to say, statistics are like bikinis, what they reveal is interesting but what they conceal is vital. Statistics can’t show attitude and the friends I’ve made through Livestrong are even better than great bikinis. 

 So while I’m a long way from where I should be, I am much much further than where I could have been without the people Livestrong is made of. They pointed me in the right directions towards great doctors. But somewhere near as important they pointed me to daily cures. A friend from Livestrong Chris taught me how to ride a bicycle to prepare for the Livestrong ride… most of my time with cancer I haven’t been allowed to drive because of seizures and this bike became my car. I’ve done 3 Livestrong rides since then, each of them taking the 100 mile option since besides being a marathoner, I also wanted to be a centurion. Just as importantly, not long after I learned to ride, I taught my daughter how to do it and we still do it together.

And while keeping it age appropriate, my daughter has been with me for parts of my medical appointments from MRI’s to neuro oncological ones… she attended the counseling Livestrong pointed me to, Wonders and Worries, we even danced at their ball. And this summer she will be attending Camp Kesem.

And I’d say following in her father’s foot steps, except we did it side by side, this year Kiana did her first 5k with Team Livestrong. I’ve raised money for my marathons and centuries even doing things like shave my legs for these centuries as an incentive to distract from how bad I look with such fitted clothes.  And somehow in the Paramount 5k, in just over 36 minutes, she raised over a $1000 for our team which is more than I’ve raised for most of my marathons and centuries so thanks for making me look bad kid. 

I’ve continued to meet people through Livestrong like Steve who even from far away gives me some good parenting guidance while dealing with the disease, like Mary who they connected me through Imerman Angels and who I’m still in contact with because she was one of the few people who also shared the same diagnosis, like Matt who with lung cancer still works out with all his heart, people like Sean who ran the marathon course on his own since colon cancer treatment would not allow him to do it on the official race day. That’s how he dealt with as he called it the bug up his ass. I could tell you about Linda who says I should propose with a livestrong ring… I can keep going on and on and on but the simple truth is that it is the diversity of that unity and the depth of it that makes it so powerful, so strong.  The fundraising done here allows the work. Just as if not more importantly, what you do, who you are, creates both information and inspiration to deal with cancer in the here and the now. 

 This is why I’ve done many races since then including the Boston Marathon with team Livestrong. Even when I’m not officially on it, I think of it while doing things like winning a marathon behind a stroller in Beaumont Texas. This year I returned and won the half and jumped for joy. I got the privilege of being part of the Spartan Charity challenge where my team took home the top prize of $2500 to the charity of my choice and it came to Livestrong.  But whether it’s pushing the system with medical treatment or on the road, whether it’s dealing with the messes of obstacle races or the ones that you get from cancer, there is one thing that has been a constant.

I started by saying that getting cancer was like being born where you cry and need a hand to hold. But as we get older, sometimes the hand holding is just to cross the street, or to comfort you in a moment of weakness, a squeeze just to share a special moment, or to be held up together in a moment of triumph. But the constant has been that since I put it on, and it is still the original one, there is a band that sits on my wrist, a Livestrong band. And the powerful knowledge that has come from that reminder, the attitude that comes from uniting that strength, will always be there every time I get privilege of having my hand held. The first hand I held was the one that had given me birth. The band on my wrist represents what I hope you will all walk out here doing… holding hands while living strong. 

1 comment:

  1. Death Ride GrandmaApril 28, 2014 at 11:13 AM

    I read your blog pretty regularly. I had an oligodendroglioma in the left temporal lobe. It was removed 16 years ago and I am still fine. Please never forget that is entirely possible.

    You are doing great things with your life - your parenting, your raising awareness and money for this cause!

    I am older than you - was 46 at the time of diagnosis, and my kids are grown, but I suspect we all have some concerns and issues in common.

    Unlike you, I had never been particularly athletic before this. But I have discovered bicycling and have ridden lots and lots of century rides - even have ridden from coast to coast. I believe my diagnosis inspired me to use my time in a way that I never would have managed to do before, and I am delighted with that side effect!

    If you ever want one more person with some thoughts on this tough subject, feel free to contact me. I can be found at whsbike at g mail dot com.

    The name I sign this comment with refers to an event I am training for. Who'd have thought???