Tuesday, November 29, 2011

Paper Anniversary

A year ago I got diagnosed with a grade 2 diffuse astrocytoma in my left temporal lobe and I barely blinked. Today, coincidentally, I have a follow up with my neurologist to go look at the results of last weeks EEG, MRI and neurological exams and to start talking about the next neuropsychological. The night before the biopsy and before the brain surgery, I slept just fine; in fact I kicked everyone out of the room who looked so worried to get some peace.

But here a year later, the night before just some basic follow up, I've been awake with nightmares all night and blogging here at 3 Am. I have no great theory of dreams other than that they reveal what's on your mind and that's fairly obvious. After the surgery when I had very interrupted sleep due to medication I kept waking up to these pleasant dreams of Kiana, Kiana's mom and I doing things together. Tonight, with no medications to blame, I keep waking up with nightmares of this tumor returning, of having to make the decision of when to tell Kiana's mom, of having to make the decision of what if I have to stop living with my daughter. Kiana's mom previously turned to an attorney who threatened to use my medical conditions to make sure that I would only have supervised visits. At the time and at this time, there are world class doctors who would state that was ridicoulous but it takes only an inkling of common sense to realize that if this returns, there will come a time where I won't be mentally capable and/or seizure prone. If that's my condition that's not who should be with a child. And there is no way to spin or play down the amount of anger I will have at my daughter's mother if I ever have to decide to stop living with my daughter quite a while before my death instead of getting to hold both their hands on my way out.

Still, if that day comes, I am working hard at making sure that these days count with Kiana. We spent a great Thanksgiving together, the one I've been most grateful ever, doing the Turkey Trot race which she finished without walking. Afterwards, we did the 5 mile adult race, and while I only started running races again 2 years ago, it's probably not to my credit that it was the first time I ever did a race pushing a stroller. We came in 2nd place in that division though with that little girl making sure to shout "Go faster daddy: the whole time to most everyone's amusement.

We spent Thanksgiving day at a couple of places where Kiana having a good time was highest priority since it was her friends from her daycare. The rest of the weekend was spent decorating for Christmas with some friends. She's sitting here laying next to me sleeping and I am glad to see that she's sleeping calmly, that her mind is at rest. I don't know the science of good parenting but part of it has to be reducing their nightmares. And there have been exactly zero days when I have medical appointment days when I am not ridicoulously thankful that this tumor has no known genetic ties.
Last Tuesday I did some neurological exams, some work, an EGG, a track workout and an 8:30 PM MRI. Today, I have some work, a meeting with a neurologist, back to work (I take as little time off as I can for sick time to this day in case this ever returns), a track workout and then dinner with some friends who are in from out of town. I am still grateful that while of course the buzz has died down that there are still those around who were very helpful during the process a year ago. Still at dinner tonight this will invariably be a topic of discussion. I always refer to November 4, 2010 as the last normal day of my life. I guess this is the new normal. It used to be that a headache, forgetting something was just whatever but these days I worry more with it. But there's a beautiful little girl asleep in my house and I probably won't get back to sleep so I should go pack a lunch for her. Here's hoping the results at today's exam show that the science of medicine and the Grace of the universe will let me keep doing that.

Friday, November 18, 2011

Known by the Scars

I had hoped that the last blog entry was the end, that somehow I could move on from cancer … Similar to the way I’ve been trying to move on from the divorce. But in the end, there are gigantic parts of life that define you that you have no control over, where and whom you’re born to, weather, and maybe getting brain cancer. And some of those end up being huge parts of your identity in both good and bad senses.

The Life Part II party was well attended with people from every part of my life from elementary school to the last few weeks, friends, family, and a couple of way out towners coming to support me. It was by far the biggest party of my life with about 100 people showing up to the house.

There are friends who have said that I’m brain cancer’s poster child. That’s definitely not a label I would have ever embraced. When I wrote the last entry, I thought it would be the end. I’d pay some penance or whatever the correct label I to the people who had helped and move on to what’s next but cancer, like the scar, may not be what’s next but it’s also not going away. It’s not like they took it all out, we’re just watching to see if it’s growing forever and permanently taking anti-seizure medication.

I keep meaning to watch Harry Potter since I’ve acquired the label the boy who lived, with the scar on his head to prove it. I still haven’t, life as a single dad is hard and busy I’m sure for anyone and I still want to believe I’m invincible so I have continued to do races and train for the marathon. I won that Brain Power 5k and was the lead fundraiser for the event. Meeting other people there who had gone through brain surgery made me realize that some of them who were also “survivors” had much worse scars in physical, mental and medical impairments. The fact that I sometimes forget a few things got to be whining much about very small scars. That Brain Power 5k was the second of 5 personal records, something I’d never achieved even when I was a more serious runner in high school and college. The next 5k I would break my time record at would be the Livestrong one.

I got a haircut which my coworkers disapproved of, a Mohawk at a brain cancer event, called Hawktober. The organizer lost much from his brain surgery including some issues with his speech, a rough thing for a guy who used to be an announcer and 4 years after the surgery, still blogs elegantly but has serious speech impediments. My work was really unhappy about the Mohawk in a professional court setting but let me keep it for a few days. My boss who had originally given me permission backtracked quickly when administration weighed in. It came off and at the end of the day, it was worth it to me.

I still miss my daughter's mother; I still love her. I always have, I always wil.l There were things I said about her that were probably less than appropriate because I was both in love, in shock and angry. The vows say for better or worse, for richer or poorer, in sickness and health; no matter what other things are out, there is no way to spin it she left me at the lowest point of my life on all of those. Still, I wish that both before and after the diagnosis, I had started to work on the things that I intended to work on after the surgery at making the house home and being a better husband and father. Perhaps, perhaps not but then maybe my little girl Kiana would still have both of her parents every day, something that as recently as last night as I was putting her to bed, she talked to me about how she’d recently had dinner with Dre and her mother’s family but that she was still going to “fix you and mommy.” I’ve gone on some dates and like anything else, some have gone well and some have gone poorly but at the end of the day, I need someone who can handle stress, a child, an ex, and a possible cancer return. With that much baggage, I often wonder if that’s not way too much to ask and if I should do this journey the way it is anyway, alone. I hope that maybe, just maybe there’s someone out there who could handle it but then I listen to songs like Ben Harper’s Forever: “Forever seems to be around when things began but forever’s not around when things end.” Of course Harper ended up divorcing the woman who he was married to when he wrote that… Realizing that relationship loss may have been my biggest lost or my biggest mistake, I even attended Livestrong’s Cancer and Relationships class. I was the youngest person in there and everyone else was a lesbian or married couple. It made for a tough evening at some level. I’ve met a girl or two that I think could handle it but I worry. Interestingly enough, the first dates were girls who were there from Part I of Life and I think if I end up with anyone, it will be someone I met after all this.

Perhaps because her mother's gone and I’m raising a child essentially, I am a lot more afraid at doctor’s appointments that are just follow ups than when “she was there.” I’ve even taken the George Clooney bet that I’ll never remarry or have more kids but that may just be the pain talking. My finances are horrible with half of the household income gone and the guy who grew up poor worries about returning there. I am still struggling with sharing that part out of pride but a friend thoroughly reprimanded me and let me know I needed to accept the free entry invite that the Austin Livestrong Marathon had offered. Interestingly, the Livestrong Invite to the Boston Marathon almost went away and then it came back as a paid entry but I signed up anyway because that’s a big chapter to me and in this story. Kiana is coming with me.

Kiana and I took a trip to San Diego where again friends I hadn’t seen in years came out to say hello and to meet her. It was her first flight not as an infant and we loved every minute of it. I had in wishful thinking booked it on our 10th anniversary for 3 but in the end, only two wanted to go. As overwhelming as it is someday, lots of divorced men, have told me how lucky and blessed I am to have the child most of the time, and there’s never been a moment I doubted that.

The Livestrong Bracelet has never come off and it’s almost been a year since I put it on. I still wear Duke, Livestrong Gear and the funny stuff that my friends gave me and on occasion touch the scar, a rough and gentle reminder that while there have been some losses, I got plenty left. I still help out when and how I can on that ultimate community that did so much for me and I am volunteering for things with the Livestrong Marathon because these have become the symbols that helped me stay alive.

But a little time has given me the perspective that I’m not paying penance; I’m paying things fowards. It was other people’s awareness and research which is why I have a chance to be alive and being one of the lucky ones that may beat this abnormal growth. I hope, pray and am trying to work at having it create some abnormal growth in character.