With the one year anniversary come and gone of my most viewed post, No Mas, which you can go back and read here, and considering what I’ve been going through the last few months with chemo, I thought this would be a good time to look back and revisit my decision to stop treatment.
I’ve had a number of people ask me if I’ve regretted my decision to suspend my treatment for the last half of 2017. I’m sure that number would be much larger, but for the most part people are polite and respectful, and they don’t want to approach me and say what is really on their minds. I think most people realize I have enough shit going on right now, and asking me if I screwed up my treatment and possibly hastened my demise isn’t really helpful. So, I will take that on with this blog. I will even ask the question most people want to ask me.
“What the hell were you thinking??!!
The problem with writing about this right now is I have a bad case of chemo brain, and concentrating on on anything longer than a couple of minutes is difficult for me. I don’t consider myself to be the modern embodiment of Earnest Hemingway, but I have certain standards that I hold myself to when I write. So if this thing veers wildly out of control, all I can say is buckle up and hang on.
In my effort to write this, I’m going back to a formula that I have used previously, The Good, The Bad and The Ugly formula. Yeah, yeah, I know, it’s an old formula and it’s been done before, but it will help concentrate on the task at hand. I will look at my decision to suspend my treatment with the bad, the ugly, and the good of my choice.
Well, the bad is kind of obvious. When I went off treatment back in May of 2017, my PSA was undetectable. In January of 2018, my PSA jumped up to an all time high of 43. Obviously not good news. And for good measure, I picked up 4 very unwanted tumors in my prostate area and abdomen. So, yeah, pretty bad.
Chemotherapy is ugly. As my brother Paul would say, who likes to change first letters of words around, it’s REALLY UCKING FUGLY! Most people know the Hollywood version of chemo, which generally shows people throwing up a lot and losing their hair. My favorite is from “The Bucket List”, which shows a very sick Jack Nicholson looking in the mirror and uttering the immortal line,”Somewhere, there is some lucky son of a bitch having a heart attack.” I hear ya, Jack. But, that is not the only way chemo effects you. A few examples.
Right now you’re probably saying,”Really, Dan, we need to go there?” I hear ya. I will make this as polite as possible. When I get sick, my body send things out going south instead of north. Same thing happens with chemo. It ain’t pretty. Enough said. Let’s move on.
This one I had no idea about. The first 10 days or so after a chemo treatment, my taste buds completely change. I am a dark, rich, coffee guy, the darker and stronger the better. Not anymore. I can’t even drink the stuff without lots of creamer and and Coffeemate flavors, and even then it’s barely tolerable. I am also a craft beer guy, the higher the IBU the better. I love a good strong IPA. Nope. Can’t do it. Tastes awful. My friends who drink Miller Lite think I have finally come to my senses.
Heartburn is something I’ve never really dealt with before. After my first chemo treatment, I couldn’t get comfortable and I was very restless. My chest hurt. Finally after sitting around in pain for a couple of days, I figured out it was just heartburn, and that I wasn’t dying of some weird chemo induced malady. Tums are now my constant companion.
This one is probably a little more obvious. Most people know that being run down is a side effect of chemo, but it’s weird how it can effect me. I can go from feeling pretty normal on one day, to having to take a two hour nap and going to bed at 7:30 the next. The cliche with chemo is “one day at a time”, but in this case the cliche is very true. I honestly can’t answer the question, “How ya feeing?” without starting the answer with the words,”Well, today I feel…”. Every day is different.
After reading all that, you’re probably wondering what could possibly be good about discontinuing treatment. Higher numbers, tumors, chemo treatments, diarrhea, beer no longer tastes good, what the hell? How could there be any good? Okay, valid point, it looks pretty bleak right now. But all that, all the bad, all the ugly, all the pain, all the sickness, through it all, there is one word that makes it all worth it. And that word is this.
Thanks for reading.
Allow me to explain. When I’m on hormone therapy, my testosterone is completely cut off. I mean to the point of chemical castration. I’ve been in contact with guys who go through this, and for some it doesn’t change their lives much. A few hot flashes, a little weight gain, no biggie. It’s better than the alternative, right? Well, for me, it’s a huge change. My entire personality changes. Apparently I’m hopelessly addicted to my own testosterone. And when I don’t have testosterone, I lose my joy.
I’m an emotional person. I have big highs and big lows. I can be loud, opinionated, strong and pig headed. I can run a marathon. I can climb a mountain. When something is funny, I don’t chuckle, I laugh. As a father, I grabbed my boys and wrestled them on the floor. As a husband, I loved my wife with all that I had, in good times and bad, for better or worse. We fought, we laughed, we cried, we made love. And all the time, it was me. It was really me.
In May of 2017, laying in a hospital bed after a dizzy spell at work, I realized something. The person that I had become in that hospital bed was not who I really am. Taking pills to battle my advanced prostate cancer had turned me into a sick, enfeebled man with no joy in my life. I needed to find that joy again. And the only way to find it was going off the drugs.
And here’s what happened. Over the next 6 months, I lost 10 pounds. I started to walk with a purpose. I noticed the sunrise on the way to work. I cried over a sunset. I took a trip up north and took pictures of lighthouses. I got caught in a summer storm, got soaked and laughed the entire time. I cried at my niece Taylor’s wedding. Instead of avoiding people, I enjoyed the company of friends and family. A friend told me,”It’s so nice to see your smile again.” That same friend’s daughters were in town for the holidays, and said,”It’s so great that Dan is acting like Dan again.”
I made love to my wife.
And I was joyful.
Some of the pics from my trip up north. A nice dark beer from Frankfort, a sunset over Lake Michigan, and the Big Sable Point Lighthouse.
So, if your asking me if it was worth it to stop my treatments and to deal with the problems I’m having now, my answer is simple.
During that time, I wrote a blog that I called “An Ode to Joy.” It was a tongue in cheek tribute to Beethoven’s 9th symphony, and how listening to it brought me joy. I had so much fun writing it, because at the time I could literally feel the joy as the words flowed from me. I love watching the video of the people singing and playing and just being generally joyful. Beethoven wrote that symphony when he was deaf, and yet the music crashes through what had to be a dull world for him, and brings joy to humanity.
Now, imagine going through your life feeling muted, feeling numb, and never really feeling joy. Imagine going to a concert by your favorite artist, and right before the show starts, someone puts some industrial ear muffs on your ears and throws a blanket over your head. You can hear the music, sort of, you can see the lights, sort of, but it’s not the same. You want to throw off the blanket, rip off the ear muffs, stand and cheer and dance and sing at the top of your lungs. This is life, with all its glory and sadness and most of all, all it’s joy.
Because of my numbers and my tumors, my doc has told me that I need to be on hormone therapy for the rest of my life, however long that is. But, I know, when it comes right down to it, I can always walk away. I can stop the injections. I can stop the pills. I can stop the chemicals.
I can always say…no mas.
And I can find the joy.
Thanks for reading
(For real this time)