Three and a half years I’ve been dealing with cancer… and I like to think that the days that I’ve been missing my drive are rare. They have occurred but they are the exception. But a harsh truth is that the vast majority of the time that one of the symptoms, side effects and how I found out I had cancer was from seizures… which mean that the vast majority of the days while I’ve had cancer, I have not been able to drive behind the wheel of a car.
Even though I know I don’t handle pre medical appointment days at my emotional personal best… I try to be aware of it. While there has been progress on how I handle it (it probably helps there are less these days and as I’ve shared with my doctors, the less I see them, the more I like them). Those nights are usually filled with bad dreams, nightmares of appointments and various past issues from waking up in an ambulance or the life changes that have come with it. When I was in Minnesota during the Q&A, someone asked what the most stressful point was… and I responded with one of the two, the fact that both times I’ve woken up in an ambulance it was not too long after a good run. The first one was literally the day after I was in the lead of a training run for the first time since college. The second was a few days after I’d taken home a trophy for the cancer survivor division while I was in the lead in the middle of a 10 mile training run. Both times I felt fine a few minutes later and both times we were then having to try to figure out why, do tests, do blood work etc. Dealing with various cancer patients, many of us struggle with the fact that we’re fighting a disease that for way too many of us comes with no “tangible” symptoms of warning. For me, it’s literally knocked me out cold. The second, which also knocked me cold, was my marriage ending shortly after… Still, answering that in a crowd full of strangers some of which were just kids didn’t seem appropriate.
Still, the day of the medical stuff, where I try to face it as well as I can… I was below average at my parenting approach. There was nothing horrible but that morning Kiana was getting redirected a lot in a snapping fashion about getting up, getting ready, finishing breakfast. I am sad to admit that it wasn’t until my roommate pointed it out that I noticed it and sat Kiana on my lap and with a hug and a kiss and no excuses, I simply said “Look, I’m sorry I’ve been rushing you too much. I have to see my doctors today but that doesn’t make me being rude okay.” The guilt would sit there through the morning adding to the anxiety… but while cancer may have be the case, I take full responsibility for how I handle it, trying to remember an adage from a high school assembly that emotions are horrible masters but we have to figure out how to make them good servants.
Then it was finally time to head out. We all have different ways of handling our demons… but I decided to take a slightly circuitous route on my bike the way to the hospital where I’d see the restaurant I first collapsed at, the hospital, the place I used to work, the MRI location. I couldn’t settle the emotions of whether the right move was to give them a middle finger or a nod of thanks of sorts… neither occurred.
Still, there were various reasons for the appointment with the neuro oncologist. The primary ones were of course medical but in April my doctor also has to fill out a summary to send to Kiana’s mother for the custody arrangement so that was part of the discussion. Since the increase of medication in December the seizures have held, he talked to me about some law change in legislature regarding seizures and while I didn’t catch all the details, I thought the appointment was going to end with him telling me I could drive in May and he said I could start driving now. Even as I had hoped that he’d allow me to do so in May, the way I would say it to anyone I loved hearing that I was in shock but I am not even sure if it was a good or bad one. There are zero appointments that I assume will go well but as I was getting ready for this one, I saw my bow tie hanging in the closet I realized this is the only one of my doctors I don’t have a picture with. His signature is that he wears bow ties because being Dr. Valiant, he is brave enough to realize that bow ties are cool. I grabbed mine and said, okay, if the appointment goes well we’re taking a picture together… you can decide whether we look more like Chippendales or Donald duck.
After the medical stuff and after the picture was taken, we took those human moments where I shared with him the Minnesota speech (https://www.facebook.com/notes/iram-j-leon/minnesota-speech/10153993565360554) and Minnesota Article (http://www.postbulletin.com/sports/localsports/runner-confronts-toughest-obstacle-brain-cancer/article_57668089-d130-5f9a-bd5c-fcb16e6472e7.html ). He told me about a new brain tumor support group the hospital is starting and invited me to it’s opening event (I’ll be there). He asked about my next race and I told him the next one was my first triathlon and turns out as I knew, we’re both runners and we’re both horrible at swimming.
Still, when I left there, the shock factor hadn’t set in and I didn’t have anywhere to be for a couple of hours so I got on the bike and just rode and rode and rode. I rode past the physical therapist I was seeing a few years back, the old doctor’s offices that I had to go to, and in the only place I actually said thank you to was past the hospital where Kiana was born. Then I stopped and the next conversation was with my neuropsychologist… where we discussed what I will always call cheating and what he will always call compensating. I talked about some of the games I do which didn’t seem to be translating into real life… he said that the issues I was describing were still consistent with temporal lobe and hippocampal damage. He shared the story about rats who get lost and how they tried to show them new things in a maze and thought they had actually gave them back a sense of direction but then realized they were just using the light shadows… (this is similar to what I do where when I get lost, I listen for the sound of one of the major highways in town as a way to reorient). We talked about the listening to books thing and the adding distractions etc etc etc but the grand conclusion was that while nothing had gotten worse, nothing had gotten better and it likely would never do so though I always try to find the glimmers of hope because the conversation ended with (if I hear of any new research on this, I’ll pass it on). In perhaps a completely hypocritical stance (when friends tell me that nothing’s improved on their cancer/other medical issues), I try to remind them to be grateful that at least things are stable. But I work harder on the mental issues than anything else… so it was disappointing.
Still, sad about one thing in shock about another, but ultimately grateful for it all, I went to my track workout and did 4 mile repeats. Then in what can really only be called an extended apology Kiana got to stay up 15 minutes later than usual to play uno and go fish.
And the next day, on my first day cleared to drive, I did not do so. Part of that is I’m not 16 anymore and didn’t feel the urgency to tear up the road the first day I got it. Part of that was insurance, batteries etc had to get into place. But most of it was just nervousness that maybe driving stick was harder than I remember. But because I do have a triathlon in 3 and half weeks, for the first time in my life, I swam, biked and ran all in one day (this is going to be a tough event).
It is my hope that I will continue to drive as little as possible but that I’ll keep the drive that was partly a reaction to that big medical restriction. But it may well say something, that the first place I drove to was a running party at a bar though I did not drink (where I still paralleled park successfully on the first try, but still almost got a ticket for not placing something correctly). And call it being cautious or cowardly, but I'm going to mostly stick to parking lots and streets rather than highways for a bit. And when Kiana found out I could drive, she didn't care that much when I said we were still going to walk most places like we've gotten used to... I think the first place she'll get driven to
The question is often asked, what drives you? And for me for most of the last 3.5 years, in cars, it’s literally been someone else most of the time. The joke someone made that my pick up line of “can you pick me up” is no longer valid and someone reminded me of something I said that if all went well I’d start thinking about getting a girlfriend (I didn’t get one that day nor do I currently have one but I am more open to the idea and there will be no one I ever call a George Clooney girl again).
But the most important thing was that the day after the medical appointment, Kiana and I played pick up sticks, go fish, uno, and did art. After she’d beat me enough times, she eventually said that was fun but could she read extra. She talked about her next race, the school carnival, these onions she’s picking at school. And as we laughed with less stress and no need to apologize… even if they ever take the right to drive away again, I hope we both keep the drive about life going.