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
15 thoughts on “Blessing or Curse, The Dorothy Syndrome and it’s ok to be Bronze!”
You’re pretty amazing Shane… Sending you & Felice hugs – we think of you often. Thanks for sharing straight from your heart.
I am at my desk reading your blog. Your blogs are eagerly anticipated as we hear about your journey from the sidelines. As you said, so far, so good! Mike, may I have the privilege of sharing this blog with some of our aspiring writers here at DECA? Just reading these with a small group of sensitive young people would be motivating for them to write this well. It would also result in some interesting discussions about life and what we do with our time here. Let me know how you feel about that? Judy
Judy, honored that you read my blog. Absolutely want to do what I am able to do to find silver linings from my situation. Feel free to use however you’d like and to call on me if I can be a resource.
I am constantly inspired by you Mike and your positive fighting spirt. Eagerly awaiting your next posting and the treatment progress.
You write so eloquently I am so inspired by your words alan and I are always thinking of you ! Shane strong!
Sent from my iPhone
Your writing is beautiful. Don’t ever stop. Thinking about you all.
So enjoy reading your blog. It is full of a lot of wisdom and thought.
I worked for you during the fun years, the years you were all about the Benjamin’s, and into the lean years….but barely! Had you not laid me off during those hard times I would have stayed with you till the end. I know, I know, but I’m loyal like that…Thank you, by the way, I have a fantastic position now!
Anyway I digress; this makes my heart sing that you truly, and deeply appreciate the value of life, love, and family.
Having had my baby brother, who at 12 years of age die in my arms from illness and disability. When he was born we were told he would never survive a day, then a week, a month, six months, a year. He defied the odds, because he didn’t know any better. He fought the hard fight! He survived burns over 90% of his body at three years of age. This when no-one had that outcome, he survived 100’s if heart attacks daily, he survived a heart that never grew, and a liver that never stopped. But the fact is, he survived and had a good life, it wasn’t a normal life by most people’s standards, but it was a good one for him and with 12 years against all odds for sure.
Anyway, what I’m trying to say, maybe clumsily, is your normal has changed, and maybe your circle of friends is a bit different, and certainly you room has a different view, but just because someone says you have a certain defined outcome doesn’t make it so. Fight the hard fight and kick cancers ass. Being mad doesn’t help, being angry or sad at someone elses predetermined outcome doesn’t do much for you either. Stay happy, smile, be thankful for all you have, be grateful for every sunrise, and push on! No regrets! No best by date, no expiration!!
Loved this entry Mike. Your coping strategies and thoughts about what is truly living are spot on to me. So thankful you are tolerating the trial. May your labs and scans continue to reveal positive results. Continue to send strength and love your way.❤️💪
Love the quote Jordan shared with you…… and obviously goes without saying, we LOVE you too ❤️
Reading your blog is truly inspiring as it shows what we all know that quite simply you are just a good guy who has been dealt a bad hand with this diagnosis of this fucking awful disease. You’ll have to excuse my profanity but it just angers and frustrates me to no end. As you know I’ve dealt with this situation with my beloved Shelly whom I lost 22 years ago. In her case the prognosis was 5% one year survival rate no trials no hope. In your case it is so encouraging that the advance of modern-day medicine and great clinical trials do offer hope. In 2001 my father-in-law was diagnosed with stage4 kidney cancer and given one year to live. He participated in a trial at the Cleveland clinic and is still alive after 17 years. I realize that this is probably the exception to the rule but I just want you to know that it does happen.
Stay strong! Thinking about your guys!
Your writing is very inspirational!
It makes us reflect on what is truly important in life and to be grateful for each and every day. The quote that Jordan used is so appropriate.
You’ve been an inspiration to all of us.
You continue to be in our thoughts and prayers!
Stay strong and win this fight!
I have read and re-read this entry multiple times; each time, I find a new gem that I love, or then another line that strikes a bit too close to home, one that brings a catch to my throat. That said, your writing is simply beautiful. What a gift. it has touched me so, as well as so many others.
Having been through a very, very long cancer journey with my oldest, dearest friend in the world, I feel every single word that you share. What you describe in such articulate detail, the conversations you’ve had and those which you’ve shared with others, the inevitable fears and uncertainties, well…yep. We never talked less than 5-6 times a day; texting was constant. At some points when I was the one feeling scared and rather weak, I asked Debbie, “How do you do it? How do you do it?” Like you, with each MRI, each trial, each treatment change, each tumor marker test, she had to look beyond the crap, focus on the next party she was throwing, the next celebration, the next milestone, the next trip, etc.. She always said, “I just do what I have to do; there isn’t much choice is there?”. Ah, but, I’d say, there is a choice. And it’s people like you, Mike, and my dear friend, Debbie, and millions of others, who find the way to do that. You show us how, even just through sharing your most deeply and intimate fears and hopes in this blog. That is the gift you’ve been given, despite the crap you face and fear every day.
Many years ago, there was a magnificent cover on the Sunday NYTimes Magazine, an aerial photo featuring hundreds- maybe thousands- of people in Central Park, all living with cancer. At that time, the concept of living with cancer was pretty new and (to most lay people like me), fairly unknown. I immediately called Debbie, and we both were crying; it was such a bonding photo. I almost wish I’d framed it. Just knowing that every day there are thousands of people out there fighting the same battle, but living with cancer. And like Debbie, you are blessed to have access to the most brilliant physicians and researchers in the world. Another gift that I know you and your family cherish.
One little tip… Debbie had terrible cracking sores on her hands, too, from the meds, and ofter wore dainty little gloves for protection. I found a product here at Olympia Health Foods called “Healing Symphony”; it was one of the best things she ever used, better than most other balms or creams. Try to look for that— it may be at DLM Wash Square, too. I hope it helps.
Enjoy the gorgeous sunshine— be well. Best to Felice; she shamed me badly in our first Words with Friends game, yowza.
Take care, Renee
Mike – what a powerful post! Your cancer is a blessing as far as I can tell; and something to pray away as well. I thank God for your life and what he wants to teach all of us through your life. I thank him for the common grace of modern medicine and ask that he heal you of this cancer…COMPLETELY! All of us are dying and as Tim McGraw sings we should “live like we are dying”. This post has blessed me today and I intend to use your insights to bless someone I love today. Thank you!