Monday, February 4, 2013

World Cancer Day-Dispelling Myths


Two weeks before this all started for me, my friend and I were out having dinner. We had both donated to a friend who was raising “money for cancer.” He’s an improviser and I’m a smart ass but in the course of that dinner we joked shouldn’t this be money against cancer. Today is world cancer day even if I think it’s misnamed, it’s probably a good day to check some realities (check some of the more scientific ones at http://www.worldcancerday.org/) .  Another friend today joked are you celebrating it because cancer has taken of your world? (with that said, please consider making a donation to the brain cancer event at Duke http://dccc.convio.net/site/TR/Angels/AngelsAmongUs?px=1118121&pg=personal&fr_id=1150)
The beauty of that website and point of the day is that it dispels some facts, ideas, myths about cancer in general and makes them more whole. Let’s do some of that that today with my own story. Someone who is a good kisser and came to my medical appointment, reads this blog and has watched the livestrong videos asked me “why do you say your cancer is rare. I looked it up and it’s the most common type of brain cancer.” That is correct but when I say rare, I am referring to the fact that less than 2% of cancers are brain cancers, diffuse astrocytomas occur 7 per 100k people, 3 in a million in the left temporal lobe and roughly 1 in a million where I have it.               

To this day, someone who left in the middle of the cancer, two weeks after a surgery, when I wasn’t cleared to drive and someone was at home supervising me and whose email signature to me is now this: Liestrong (v):win at all costs; act innocent; crush whistle blowers' credibility; give crumbs to charity as a coverup; admit culpability only when caught red handed; and always act like a victim, or remorseful criminal on Oprah's! says that cancer had nothing to do with her leaving me. I don’t know how to respond to that other than that every relationship has issues but cancer made me aware of many and I guess her too. I chose to try to correct them. It tells you something that I bought a house a month before my daughter was born but had put very little effort into any room but Kiana’s until after I came out of brain surgery. One of the jokes that was made in that original ER was her saying, everything I’ve put up with and now you’re dying (how much truth is told in humor…?). Both doctors and other survivors have seen this equation far too often. It tells you something that there were ZERO other people with this diagnosis in a national network and LOTS with a similar situation of getting left in the middle of the crisis. I’ve met some who were drawn closer together, others who were pushed apart and those who like us apparently one was trying to draw while the other one had turned and walked away. I don’t know anyone who has an ideal marriage but at the time of the diagnosis, to me it had been a great year but perhaps cancer was the magnifying glass that finally inspired both her and I to change, we just changed in different directions. . I was committed for better or worse, richer or poorer, in sickness and health till death do us part. Someone else apparently signed up for just the upper half of that equation.

There’s been many many comments to me about this blog, some publicly here, most on facebook, and some private ones. My favorite one came recently in regards to the last blog… cancer changed you and I like the new you better. I do too, even if it means I don’t live as many years because in some ways, perhaps all the significant ones, I’m living better. There are few phrases I hate as much as illegitimate birth since all births are legitimate to me and origin doesn’t matter so much as what you’re doing with it now and where you’ll take it from here.
That complement of me not knowing to quit, I hope it’s right and not a myth. But when I’d watched my life fall apart back to back, cancer diagnosis plus getting left literally in the middle of the night. I stopped running, the guy who hadn’t blinked when he was told he was dying and slept fine the night before the biopsy and the surgery, couldn’t sleep at night. On the nights Kiana was here I’d just keep working out and it never put me back to sleep but it usually exhausted me enough to where I slept well the next night. On the nights Kiana wasn’t here, I was lazier and drank some tequila, not to feel good (my drink is rum and coke) but because it somehow managed to put me to sleep. There are times I’ve said out loud and thought it even louder that if a court really does rule that I should only have supervised visits that I’m done following up with these doctors and I’ll die when I die but those are moments where I feel cornered by cancer and between fight and flight, I am usually a fighter. I just don’t know how to fight there. I’ll be training for that Duke 5k as soon as this marathon is done but the simple truth is that for the nice compliments I’ve gotten from running, I don’t even know what I’m doing. I follow the coaches training plan and look down at the watch to see if I’m going the speed they told me. I’ve been fortunate enough to where fight and flight one can’t tell the difference which one of the two I’m doing while I’m running. Most of the time, I’m not even sure.

Last Friday, I volunteered for the 3rd time at Kiana’s school mystery reader. We read a couple of Dr. Seuss books and a Valentine’s Day one. The teacher usually gives some hint and the kindergarteners try to figure out the parent who is outside the door. It was more than a little disappointing about my gender to realize that they guessed me immediately because the first hint was someone’s dad and, in that classroom, it’s only been moms who have been the volunteers. Saturday I Volunteered at the special Olympics and I am proud to be a good dad and have a great mother but what some of those parents are doing for those children to be able to compete in those make my 30k trophy seem like a myth vs their accomplishments.

Then on the bike ride home… I watched a motorcycle flip over a median and was the first responder, mostly because I was on a bike and it’s easier to throw it down than to park a car. I was trained for this both having a probation officer and head lifeguard in previous lifetimes and stopped traffic. I did what you would expect, stopped traffic, checks his pulse, called 911 (fortunately an actual off duty EMT stopped by a few seconds after) and started giving me more technical terms to tell the 911 operator. A crowd started to gather and I ignored it until in what was immensely bizarre to me a man with a little boy came and stood the closest. In certainly a less than pleasant voice, I told the crowd to all get back to the sidewalk and they all did. The man’s phone would then ring , it was a few feet away and “dad” was calling but I didn’t answer it. It was a locked I phone but there was a text that said, “did you fall asleep?” The guys eyes were open but it seemed like our eye contact didn’t seem real. Within a few minutes, EMT’s were there and handled the situation but when the guy came to he was so disoriented that he was screaming and telling them to get off him and it appeared they sedated him. As I headed back to my bike, a woman yelled out at me. She had been behind the bike and during the events had watched the off duty EMT’s kids in his car while he and I (by that I mean mostly him) handled it while the ambulance came. She complimented me and said “you handled that perfectly, I am a cyclist too and so I stopped because that could be me or you anyday.” And that’s when it hit me… and I started shaking and crying those last few miles home. Nicole, a doctor friend whose been mentioned a couple of times has pointed out to me that both of the times I’ve woken up in an ambulance I’ve been lucky that 1 time I was at a meal and the other time I was in a run and that both times I was near friends, that both times I’ve woken up to a familiar face. I obviously don’t get any follow up on what happened to that stranger but I felt both bad for him and for his family who would have to wait a while before hearing anything? That bracelet with emergency contact info on my wrist will stay as long as the Livestrong one does.

I was supposed to go to a party Saturday night but I was too shaken up to do it. For those of you who think some of these entries are all over the place, you should have seen the stuff I wrote down Saturday night. Kiana knows how to call 911 and we’ve practiced me collapsing and her getting my phone out of my pocket or her using an inactive one she uses to play with but knows that she can use for that. But I certainly wondered after seeing that if maybe that request that I only have supervised visits is so unreasonable. It’s not in anyway because I don’t think she can’t handle it but then an adult could walk her out and she wouldn’t have to. I sat and cried and wondered and that day may come but I still believe that it’s not anytime soon. How can anyone not believe that when I ran 30 kilometers while literally pushing her?

I had a Superbowl Party Sunday night. There were friends both old and new there. I went and volunteered at Kiana’s library today and a volunteer there and I traded some stories. She was there because she has Parkinson’s and got bored just being at home (doesn’t have a child at the school). I have enough hobbies to where I would never get bored but I go because I want to still contribute and try to learn some new things (turns out getting books into their proper places is more complicated than I ever realized). Kiana and I started the valentine’s cards today, all hand made. She has to make one for every classmate but she put extra effort into some because those are extra special friends (she even made one for a boy in which the two of them were in a heart and got a stern talking to about it… j/k)


I’ve lost some friends in this journey. Some because life sometimes just happens, others because I can be a pain the ass, others because they disagree with how I’ve handled some of this stuff ie so publicly, others because they (as perhaps intelligent people should) avoid drama like the plague. Some have been constant. But I’ve also gotten closer to some people, both old and new. One of those cancer friends I’ve made, two weeks away from his first marathon where he overcame physical deficits to be able to do so, he above most people has helped me realize that cancer helps you realize which parts of your life are myths and which are facts. Some of that like this damn tumor is impossible to tell apart, some healthy parts of me and unhealthy parts are intertwined and some of those friends, counselor, ministers have been the doctors in helping me fight off some of the garbage.  I am sorry for the deficits of mine that made some of those relationships into myths but I am grateful for the relationships that this continue showing they are in their own way the facts that matter the most in my life. 

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