Thursday, July 17, 2014

If It Ain't Broke

There are some people who view my cancer appointments differently than I do. They are, at both some level logically and emotionally, more stable than I am. I've met cancer patients who just assume it's a regular check up but those are generally ones whose cancer treatment is about whether or not something has returned or metastasized, not whether or not something is stable. I've never been afraid of judgement so if me being stressed for a few days and working out extra hard or being atypically emotional is that bad... well, have at it. So in simple frankness, I do stress when they are coming up.

I went in to see the neurooncologist and just sat quietly in the lobby... well, I did a few things before that. I love photography and jokes but while all levels of them will make you smile or emotional, there are photographers who even when they look at their pictures the depth they have is what they try to capture, worth a lot more than a thousand words and that's often what looking at an MRI feels like. I let my imagination wonder to how much the "pictures" of my brain really capture my mind? I always take home a CD and look at it like I have some clue how to read it... I wonder since I've got them all if there is anyway to make a greatest hits album. For the first time ever during an MRI, I actually hit the panic button in between the contrast and no contrast session. I wasn't panicked but I felt like I was going to vomit after they injected the medal dye and figured they wouldn't be a fan of that in their machine. Different explanations were thrown out about my the medal contrast went in too fast or what have you... I didn't worry about the cause, just let it subside and we get the MRI done. There has been exactly one MRI I didn't vomit after and let's just say that the number did not double.

So, I'm not sure quite why things have gotten more and more stable for the last year and a half but in trying to keep with the pattern of previous medical appointments, I did the same thing I've done before the last few. I met with my counselor/minister and we had breakfast and prayed. Never before nor at this one have I prayed to beat cancer... I figured if there's a guy who runs the universe he can decide what he wants to do on that... I just asked that I do the best I could with whatever news came.

I also rode my bike to the doctors sinceI'm not superstitious but I am a little bit stitious. Actually, no I am not stitious at all but I do know that many of the ways we try to capture the universe are less than adequate. But there have been zero appointments that I've gone to on a bike that we've gotten bad news so I just kind of decided if it ain't broke, don't fix it and rode there in the Texas summer hoping that if the pattern of behavior got me here, well let's keep it going hoping for the same results. No such thing as false hope right?

The doctor has a new assistant (the old girl was a lot cuter and more clear spoken than than this new guy; guess which one of the two I'll remember better). A few friends lately have asked if I've lost weight (I think my spartan working out might be tricking them cause of my new massive biceps j/k) but the scale at the doctors office said I had not lost weight. In those type of circumstance, there are times you just have to trust your friends over a scale ;-).  At every doctor's appointments I read through whatever they print out or hand me. In previous ones with blood work, I'd noticed that I have no new std's (nor any old ones in case anyone was wondering). I asked why we were testing my blood for that and it turns out that a couple of STD's will break the brain/blood barrier and so if anything shows up in the MRI they want to know that it's cancer and not anything else. But it's kind of amusing to be tested for STD's. And while I certainly should be in no hurry to get engaged even if I've finally opened up my mind to being open to a relationship for the first time in years, I was rather amused that at this doctor's report the MRI report showed that I had no possibility of being pregnant. While that was obviously disappointing, I comforted myself by saying I've got a cute kid already anyway and maybe if I don't get pregnant eventually I'll just have to adopt.

Anyway, he showed me the MRI... On the side where the surgery occurred since it could only be "attacked from one side" without destroy language and memory functions, Dr. Vaillant said the tumor and scar tissue were no longer distinguishable which apparently is a good thing. I used to go to Duke before we had a neuro oncologist in town and one of the many remarkable things about Duke is that they had a brain MRI almost a decade before anyone else. I thought that was a bit of an exaggeration till this appointment where a secure log in for electronic records was being used since I first started this journey with them almost 4 years ago. Duke had it in place then and I don't know how long it had been true at that point but anyway, if this blog shows anything, whether records are kept electronically or in paper is only relevant in how you can access them. Maybe it's why some of those meaningful things in my life have to be emailed but others I decide are worthy of being hand written or pictures that should be printed out.

It was stable and I told him about the problems with pharmacy issues (for a drug I've been on since October) I am now on the 3rd pharmacy. Costco never had any problems with it but when I got new insurance, it wasn't covered by Costco. Out of the options, I switched to CVS because they had taken the stance they were no longer going to sell tobacco products at a pharmacy; a noble stance in my book. However, while there were never any serious issues customer service wise, they just stated they couldn't seem to find that drug and the pharmacist suggested that I move to another drug. I moved to HEB finally and the pharmacist there also acknowledged a new drug was easier to get. Still, there are many reasons I love my neuro oncologist. He's a runner, he wears bow ties, he's practical but as I talked to him about the suggestions from the pharmacists for moving to a new drug... he said that he thought there was a way to keep refilling it through the hospital itself and since we finally found a way that had stopped the seizures, it'd be better to continue with it because if it ain't broke... don't fix it. Unlike cancer, he keeps growing on me. And unlike any cancer growth, it's a good thing.

Then he said probably the most pleasantly surprising thing any doctor has ever said... we don't have any appointments, MRI's anything until 2015! In 2010 when this all started, I had a hospital stay and more appointments in 2 months than I had in my entire adult life combined and those were all for sports injuries. In 2011, it was 12 for 12. In 2012, it was 10 out of 12. In 2013, it was 7 out of 12. And in 2014, assuming, dreaming that there will be no more seizures or anything unexpected, there will be five appointments that all occurred in April and July. So for the first time since 2009, looking down the road starts to feel a little less crowded with doctors and I'll see them more at projects we're working on for cancer patients than I will for medical reasons... And that just feels crazy. I like the song "I want crazy" but it turns out this is the kind of crazy I want where normal feels like crazy.

Someone wanted me to go out and get a drink with them (I did not but they were nice enough to go out and have one for me; it's like my batchelor party once upon a time where a couple of friends were nice enough to go to a strip club for me without me). I let this medical news sink in for a while but I biked and took a nap. Then I went on a walk and sat under a bridge thinking, absorbing the thoughts and experiences of the greatest gifts of the universe (being under a bridge is safe from murderers right?). I certainly reflected on some of the mistakes I've made, some from rushing into things or not doing them properly, some from not being open to the possibilities, some from letting too much of the past or potential future conflict with the present. Who knows what's coming but the future but my dream for 2014 was that it would be more predictable then the last few years has been and I am waking up to that dream more and more. There are certainly things in my life that I've allowed to stay broken too long that I'm finally working on.There are parts of my heart that are broken but I think it's possible to love with all the pieces. There are parts of my brain that both the appointment in April and yesterday show haven't improved and are broken but holding.

 But afterwards I went and ran on the track... And I ran with conviction. Then I had a good meal and a good nights sleep with some good dreams. Because if it ain't broke, don't fix it.













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