Still Kicking


It’s been a bit. Sorry about that. I’ve thought about and planned on writing many times, but it just hasn’t come to me. It’s been a busy month or so with several trips to Phoenix Mayo Clinic, work and family travel scattered throughout. While I’ve been busy quite a bit and happy to be engaged to work, other times I’ve also been recovering and taking the necessary time to do what my body requires of me. All the while, there just hasn’t seemed to come to mind anything that I felt needed to be written. Right now I’m sitting on a bench in Phoenix outside the Mayo Clinic after yet another seemingly ridiculously short set of appointments that shouldn’t require a flight and overnight stay to accomplish, but they do. So here I am with some time to spare and I figured it’s time for an update.

Now that’s not to say I haven’t had any streams of thoughts, questions and ideas. There are plenty always running through my crazy often sleep deprived brain. Just nothing has seemed all that interesting or worth putting to words. As it applies to health, this is a tough time to think of anything to talk about. We are in that limbo stage of taking the chemo drug and hoping it’s doing some good with really no idea if it is or isn’t. We won’t know until two weeks from now when they do the new CT scan and they make that determination.

Sarcoma is a tricky bugger. Being a soft tissue cancer it doesn’t show up on an ultrasound or easier scan. No blood work is going to tell me a number that says this drug is effective. It comes down to a heavy dose of radiation scanning it from various angles to see where it’s spread and to measure the sizes against the last scan. That’s pretty much it. So we take the meds and wait. Waiting sucks.

But we have hope. We hope that this third tier drug Regorafenib provides some benefit, and hopefully for more than just a short time. When I started this trial we lamented not getting right on the trial drug, which we thought/think may offer more probability of success. The reality is, but getting selected on the alternate first we have the opportunity to cross over to the trial drug later when/if this one fails. The reality is it will fail. They all do eventually. Sutent failed me in only 3 months. Failing means the tumors continue to grow and spread and a rapid rate despite the treatment because the drug isn’t matched to the mutations present in my tumors. Maybe it is hitting some of the tumor, but not the majority of it, so it grows unabated. Gleevec lasted me about a year. But the further reality is, there are only so many of these drug options available, and when I blow through them, that’s pretty much it. I can circle back and retry things, but all along the way if the drugs I try aren’t a match the tumors keep spreading and growing. Not a pretty sight to see on these scans.

That’s what we call scanxiety.

You get the anxiety of what the next scan is going to show. If you’re in remission you worry the tumors will come back. For me I only had a 3 month period of that hope after my surgery. The tumors were back right away. If you’re already showing growth you head into the next scan worried about how much more it will have gown and where. On a new drug, you want to see that the growth is at least slowed down. I used to hope to see shrinkage in my scans, but now I can’t let myself even hope for that. Just hold it at bay, even a little. I’d be happy with that.

We start to set our expectations lower in hopes of having a low bar that can be met or surpassed. Lately even our low expectations have been too high. Trying to break out of that mentality is tough, even though it’s been a tough reality.

So what do I expect to see in 2 weeks? I get asked often “do you think this drug is working?” Boy howdy I wish I could answer that with some authority. My typical answer is “Depends on the day.” Some days and even stretching into a week or more I feel fantastic. In those times the welling of hope can start to appear that maybe, just maybe this is going to tame the beast. Maybe I can stretch out the good living and enjoy much more time of relative good health to make memories with my family, enjoy each day and keep searching for the right answer for me to get even more. Then the pendulum swings brining back fatigue, pain, rashes, and more, bringing with it some despondency about my prospects

I hate that. I want to be positive no matter the current circumstances or how I’m feeling. But I’m human, and it does get me down. I get frustrated when I see my capabilities dip, even more so when I look at my numbers over time and recognize a fairly consistent decline. Crap. But then I pick up my negative butt and push to do something that reminds me I’m still alive and kicking and even if I’m slipping down the shale slope I can dig in my heals and slow the descent. I refuse to go down without at least making an effort to climb back up to points I know I can or at least believe I can still achieve.

So when you ask me how I’m doing lately, I often have a hard time not being blunt and honest. “I’m good” shouldn’t be hard to say, but it is. But really, I am good. I feel fortunate in so many ways. Loving family, still relatively healthy and capable of doing so much. I love being able to still work on some great projects and with fantastic clients that are patient when my delivery times may be a little slower when I need a day off here and there. I love being able to still travel and do event gigs that challenge me in my skills and keep me active. It’s at those times I often feel the most alert, alive and frankly normal. I can almost even forget for a time that I’ve got bigger concerns going on.

Usually asked I can muster a “pretty good” response. It’s honest. Some days take a little more powering through with a grimace for a smile, but even those days I feel a sense of accomplishment to say I can manage whatever is a pain, both literal and metaphorical. The weather is finally warming up on Utah so I’ve been able to get out and ride to some of my favorite destinations. It clears my head and gives me a huge sense of accomplishment to get out and ride. I can feel I’m slower, my strength and stamina obviously in decline to me. But I’m there and still turning those pedals. I push with a hope that I can force my body back and regain some of what I’ve lost in recent months. I push with a desire to just experience again, each time, that feeling of being outdoors and being exhausted because of physical effort rather than unfounded fatigue. I get outdoors to live, and love every minute of it.

I’ve had some wonderful experiences since my last update. A quick family road trip to Newport Beach was amazing. Our shoestring budget trip was just what we all wanted, enhanced with an amazing friend generously upgrading our budget hotel to a Newport Villas suite for a few days. Much better digs. Then off to Hawaii to work for the rest of the week followed immediately by a week traveling to and working in Chicago. Crazy different but so fun to work in both locations. Back home with some necessary recuperation and then some volunteer time with community photos and the my daughters play performances. Next up is Texas with my old company to photo products at oil field installations before coming back to Phoenix for that scan. How’s that for some variety? Oh how I love the crazy variety of locations, experiences and people photography has brought me.

Probably one of my favorite highlights was being able to visit with my old high school friend Marcus when in his heck of the woods in Hawaii. Catching up on so much and revisiting old memories. Then in Phoenix later seeing an old work friend I haven’t seen in over a decade. How cool is that to travel to distant places and crossing paths with friends.

Really I had planned to do so much better with storytelling on these trips and sharing my experiences with writing, photos and video. I just kinda lost my mojo for a bit. Things start to feel insignificant to tell, repetitive and just not all that worth sharing. But I do find myself missing the exercise of at least writing a few thoughts. Months ago I wanted to write more frequently and shorter updates (that people might actually make it through reading!) I need to get back to that.

So at this point I’m not sure I have any epiphany to share or wisdom that seems oh so wise in the moment. Thinking got a title for this post all that came to mind was a little Simple Minds, Alive and Kickin’. Seems fitting. Some days that’s just enough to know and feel, and that’s ok. Tomorrow I’ll get back in the saddle and crank out some times weather permitting and feeling maybe even a bit more alive and kicking.

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