While it’s only been 3 weeks since we started this clinical trial, it feels like a long time. I’m sure that is due in part to all of the visits leading up to starting the trial, to our favorite new vacation getaway – MD Anderson – Houston. This marks 5 of the last 6 weeks that we’ve been to Houston. Sure, the allure of beautiful seaside get aways, lake homes, European vacations may be more preferred, but Houston has a special appeal to us right now. Houston is sort of our center of hope these days. I can’t say that it is my happy place, but maybe it’s my healthy place, or at least, the place that will give me the best shot at health.
Funny how perspective changes so quickly. I was talking with a cancer survivor the other night and we agreed that in a unique and obscure way, cancer has made us better. Searching for a silver lining when diagnosed with a stage 4, inoperable, incurable disease takes some work, but I believe that there are silver linings. Yes, I acknowledge that having cancer sucks, but once that is accepted as fact, now what? Start to find the best way possible to survive and thrive while accepting cancer as the new normal.
Last week, I went to the Bengals / Steelers game with Lindi, Adam and Jordan. We always tailgate with the same group of friends that we have been tailgating with for years. It was different this time. This is the first time that I showed up at the tailgate since my diagnosis. So shots of Tequila were replaced with shots of reality. I was talking with one of my friends and he was sharing how much my situation pissed him off, how frustrated he was about it, how bad it made him feel. I tried to respond, but got caught a little in the emotions of the moment. There really isn’t much to say to disagree either. He went on to say that he reads my blog and often reflects as to how he would cope with a similar situation. It was somewhat of an awakening thought to me. If there is a silver lining that I can hope for from my illness, the thought that I might help shape the way that people will handle a personal health crisis in a positive way, would be an awesome outcome.
As I was thinking later, I went back to a question I posed to somebody else at the tailgate – is knowing that I have a disease that will likely take my life a blessing or a curse? I think the answer that comes to the minds of healthy people is – it’s a curse dumb ass! I get it, but I am viewing this from the perspective that we all are going to die one day, my path may be outlined, but nobody gets out alive! Is it a curse to know, or is it a blessing?
There are definitely blessings. I see people that are constantly looking for things that will bring them happiness. They’re searching for material possessions, for different ways to find happiness, but escaping the moment. So busy in the search that they may be overlooking that what they’re looking for is right in front of them, if they slow down just long enough to see that it’s there. I think of it as the Dorothy syndrome. I’m referring to Dorothy from the Wizard or Oz and that magical moment when the good fairy princess tells her that she always had the power to go home, but that she needed to figure it out on her own.
When my situation unfolded, it became very clear to me that there are so many blessings that when I take the time to appreciate, greatly eclipse the curse. Of course this is so much easier to say (and write) than it is to live by. Every day I am mired in chasing a respite from the curse, trying to find my way to Oz, which puts the curse front and center. I work hard to overcome that. I work hard to engage in the daily activities that I love so much, whether it’s time with Felice, family, friends, golf, watching football, engaging with one of the various business interests or philanthropic causes I’m involved with or writing this blog. I work hard to seek normalcy, find the blessings and enjoy normal life. But like Dorothy, it’s hard to ignore the Wicked Witch.
On this particular football Sunday, the somewhat routine activity of going to a game with some of my kids was more than just going to a game. There was much more of a sense of how special these times are – just being together and doing something that we’ve been doing together for years. In the backdrop, my family all has a heightened appreciation of our times together. We don’t take those times for granted, we don’t assume that there will always be another moment to share, we realize that tomorrow is not guaranteed. On one day when I was feeling particularly blue, my son shared a quote from Alice Morse Earle ‘Yesterday is history, tomorrow a mystery, today is a gift, that’s why it’s called the ‘present’. While it’s pretty cliche, it’s the type of mindset that I believe one must adopt to get beyond whatever crap they’re dealing with in their day to day life. It’s not easy to maintain this view, but I think it’s one that all can benefit from.
So back to Houston :-). We’re here to check and see how I’m doing after the first cycle of this trial. As a reminder, a cycle is 21 days. I take two different oral drugs – the base drug Xeloda and the trial drug Varlitinib (or placebo). The Xeloda is 14 days on, 7 days off. Varlitinib (placebo) is continuous, daily. At this point, I am reasonably certain that I am on the trial drug, but there is no certainty. I have a small rash on my chest that is likely a unique side effect to this drug. The side effects have become a modest nuisance. My hands are starting to have some cracking sores. I have blisters on my lip. I have irritation in my nose. My GI tract is wrecking a little havoc with my bowels. I am nauseous regularly, more recently presenting itself a bit like morning sickness. I have some fatigue and best of all – my skin is a little bronze! All of these are nothing more than inconvenient nuisances, but the bronze thing definitely freaked me out a bit. People see me and comment on how healthy I look – ‘Hey Shane, you playing a lot of golf?’ ‘You look good, nice tan’. Guess what, I haven’t played golf in two weeks and haven’t been in any sunshine – it’s the drugs! I asked the Doc about it – we talked about what is causing my nice ‘bronze’ coloring as he describes it. No concerns, just an effect of the drugs.
My blood work and other labs look really good. My cancer marker has continued to drop, my liver enzymes and all other important numbers are solid. So far, so good. My body is managing the treatment and I continue on with the next round and come back to Houston in 3 weeks for scans. That’s a blessing!
It’s a blessing that I have the ability to pursue world class care, pursue treatment options and have such a caring and loving family to feed me strength. The prayers, support and care that so many of you offer me every day in so many different ways are such a difference maker. So, the answer to my question isn’t as straight forward as it might appear – blessings are found everywhere.
Mike #ShaneStrong #cancersucks #findtheblessings #noplacelikehome