Thursday, January 25, 2018

My 5th Re-Birthday... A Milestone Reached!

Hello everyone!  It has been a while since my last posting, but honestly there has not been a lot to report. At least when it comes to the esophageal cancer. It is true that in October of 2016 I had a thyroidectomy due to thyroid cancer that took my entire thyroid gland, and in October of 2017 I had cryo-ablation of clear cell renal carcinoma. Basic meaning, I had cancerous cells on my kidney frozen to kill them. In fact, the follow-up scans for that cancer were just done this week and I get results in early February.

Having said that, why am I posting then if there is little else to report?  Because today is a special day. Five years is generally the milestone you want to be able to achieve after a diagnosis like this. For a long time that was the mark that told you that when you reached it you were "cured" of cancer. At this moment five years ago today (11:45am on January 25th, 2013), I was in surgery for esophageal cancer. They removed a majority of my esophagus, the upper portion of my stomach and 31 lymph nodes. About 13 hours in surgery, incisions on the chest and on the back, 16 days in ICU, 3 more days in a "regular" hospital room, 6 weeks of post-operative radiation every day (well Monday through Friday, weekends off), 6 weeks of post-operative weekly chemo therapy, physical therapy, 3 months of home recuperation... Numerous doctor visits and follow-ups. The list goes on and on. But here is the bottom line... Five years ago I was reborn, so to speak. Given a new chance. Today is my 5th re-birthday! I would sing at this point, but I enjoy having windows and dogs that can hear more than I enjoy singing. 😊  Does that mean I am cured? Maybe. Wait? What? Why just maybe? Basically because no one knows for sure. Is the esophageal cancer gone from my body right now? Absolutely! Will it come back? No one knows... So "maybe" is the perfect answer here. It’s one I am happy to report too! Let me try to explain a little more...

Back in 2013, the survival rate for the type and stage of cancer I had was 8%. That was stage 3 with lymph nodes involved, but nothing more. That is what they call "regional" cancer, meaning it has spread into lymph nodes or other nearby tissues in the body, but the affected area was basically still in only one place and near the tumor. That's also one of the reasons I didn't need chemo and radiation before surgery. Now, only five years later, that same type and stage now has around a 23% survival rate. For people who have caught it earlier (Stage 1 or 2) that shows no spread to any other areas, the rate goes up to around 43%. They call that "localized" cancer. And finally, if it is diagnosed as "distant" it means the cancer has spread to other organs and/or lymph nodes that are away from the main tumor site (stage 4). That survival rate is around 5%. Yes, that is a low percentage, but it is very close to the survival rate I had just five years ago and I'm still here! This is beatable. Trust me.

Now... a few other things to keep in mind. Survival rates are, plain and simple, just rough estimates. Period. They are based on the outcomes of many people who had esophageal cancer before us, but they can’t predict what will happen with any specific person. Knowing the type and the stage of a person’s cancer is important in estimating their outlook, but everyone and every diagnosis is different. A lot other things are important and factor into that too. Things like the treatment the patient gets, how the cancer responds to that treatment, how the patient responds to that treatment, not to mention a person’s health in general. There are SO many variables we could never list them all. When your take all these things into account, still no one knows for sure.

Now, having said all that, does that mean I don't believe I am cured? Hell no! At this moment in time I am NED and cured! For those that don't know what NED is, it stands for "No Evidence of Disease." A younger gentleman I know, who was diagnosed and operated on a while back, and his wife recently had their first child. A boy they named Ned in celebration of his having no evidence of the disease. That was the coolest reason for a name I had ever heard! That's being positive! I do my best to keep a positive attitude. After the way I started all this, as you may know from previous blog entries, I wasn't always so positive. I want and need to stay positive now! Positivity and humor are huge weapons against this, at least in my mind. I have no cancer. I have a life, and one that I take a lot less for granted now. I am "me" again, but an enhanced version... Brian version 2.0. I see more, notice more, enjoy more, listen more, cry more, feel more, love deeper, hold on to hugs longer, say I love you more often and to more people. Some would say I have turned soft or something like that. I'm sorry they feel that way. They have no idea how this feels, this "second chance." I've gotten a second chance at living and it has opened my eyes and mind and heart wider than they were before. It is absolutely amazing what you can see and hear and feel and just experience if you allow yourself to. The problem is that people are just "too busy" or too into what is bad around them to see anything positive or to live most of the time. John Lennon said it the best way I have heard in his song "Beautiful Boy." The first time I heard it was when I was watching a movie called "Mr. Holland's Opus." Lennon's line in the song was, "Life is what happens to you while you are busy making other plans." There was another good line that speaks volumes too, this one from "Ferris Bueller's Day Off." That line says, "Life moves pretty fast. If you don't stop and look around once in a while, you could miss it." The sad thing is that it took a life-threatening situation for me to see that. I was like so many other people, too busy and into my own life to actually live it. One more movie line here, an introverted, nerdy-type character is talking about just living through the night based on the weirdness and antics that had happened up to that point in his night. His friend, who has been experiencing the same night and antics, tells him, "You're not alive unless you're living." That comes from a movie called "I Love You, Beth Cooper." As you can see I am a little bit of a movie guy, but a lot of times I get things out of them, and in these three cases, the lines struck home very deeply for me. They all say, basically, stop. Look around. Enjoy all you have. Be ALIVE, don't just live. Take time to enjoy the sound of children playing on a playground, or watching a bird flying in a clear blue sky, or just marveling at a night sky with the moon and all the stars and planets, or the sound of a loved one as they are deeply breathing while asleep (maybe not full on snoring, but you get the idea 😊)... or the beauty of a baby smiling at you as they see things for the first time ever. Listening to people. I mean REALLY listening. Not just to the words but to the feelings beneath them. Offering advice when asked, otherwise just offering an ear and a shoulder to lean or cry on. Hugging longer, kissing more often, saying I love you more... All these things I have learned in the last five years.

I would love to say that I came to this realization within my own little skull full of gray matter, but that would not be true. Well, not completely anyway. It took a few other things too. First, it took a life-threatening disease. Second, it took my love, my wife, to talk me off the ledge a few times more than I care to admit. That woman is the living embodiment of wedding vows... for richer or poorer, in sickness and in health, until death do us part. She literally saved my life and I will love her until the end of ever, then forever after that. And third, it took our family and friends to help me to see that I was wanted and needed and important in all their lives. To see that we were all stronger with me around. It took all these things to get my brain to look at life and living from this new perspective. I just had to be smart enough to see and accept that new vision... and I have. There is nothing like it. I kind of liken it to getting part of your childhood back. You start seeing some things with wonder again, like we did when we were kids. Not questioning so much as just experiencing and enjoying and sharing. In my new view, that is the definition of living.

The thing is, this is a never-ending change for me. In fact, it should be that for anyone. How so? Well, whenever you discover and experience something new, your view changes a bit. That should make you take action. Maybe make you re-adjust your thinking and feelings. Part of living is learning things and acting on that knowledge, but now I realize that we can get so wrapped up in the actions that we forget to live in the moment. To feel it, experience it. When we don't do that part, we miss out on a lot of living. Plus, doing those things might drive our actions in other directions too. Just "watching" the new situation or whatever it is, is like watching a mouse in a maze. That's all fine and good and you can get a lot of information out of doing that, but I'd now rather BE the mouse. Experience the moment. Get my own perspective on it instead of just standing back and watching it. Admittedly, this is something I am still working on. I am really REALLY good at standing back and watching. Feeling and experiencing things more is taking a risk. With risk comes the possibility of getting hurt or learning something you really might not have wanted to know, but without that risk... you'll never know. At least not for sure and definitely not from your own experiences. Some might use the old adage, "You can't lose if you don't play." When I hear that, I come back with, "You might not lose if you don't play, but then again, you will never win either." So that brings us to the definition of winning. What is it exactly? I'm not going to even attempt to tell you. Mostly because each of us has our own definition of how we win or how we lose. The definitions are as individual as fingerprints. What I might see as winning you might look at like one of those RCA Victor dogs in the old picture ads with the tilted head and ears up looking at the old record player seemingly thinking, "What the hell is that?"

So as I come to the end of this "longer than I thought it would be" post, I wonder if I am making sense. After a couple of re-reads and tweaks, I believe I am. Hopefully you feel the same. What I hope and wish for you is that you are living as I talked about above. That you can start to “be the mouse.” Feel and experience and share for yourself. Don’t take someone else’s word for it, or their definition of the feelings. Only you can feel your feelings. Don’t let someone else feel them then tell you about them and dictate how they make you feel. Live more, smile more, feel more, love more, and experience all you can!

As always, live long and prosper, my friends. Love to you all!

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