I am sitting in the kitchen this Friday morning, June 26th, drinking my morning coffee. Got back yesterday from spending a few days in KC with the kids and grandkids. I am still in vacation mode. I only know what day it is because of the kitchen calendar. Yes, the calendar.
I find myself looking, no staring often at the calendar. It was purchased last year while in Alaska. It has many beautiful pictures. For the month of June, you see a wonderful picture of a Humpback whale jumping out of the water. That picture makes me smile. It takes me back to our adventure and seeing with our own eyes many beautiful places and things. Including whales jumping out of the water. The beauty of this world.
When I look at the calendar, I also see quite a bit of writing. Like most people our lives are somewhat controlled by what is written on the calendar. Some things are written in pencil, and others in ink. What is on my calendar tells me where I will be going and doing. What is on my refrigerator tells me where I have been and what I’ve done.
As I sit here drinking my coffee looking at that whale on the calendar, I can also see the writing on the calendar. Now I cannot read it from where I sit. Damn bifocals. But I know what is on the calendar.
Most of what is on my calendar these days are medical appointments. A few are for Christy. Most are mine. My months are full of medical appointments, and June has been a busy month. July and August will be repeats of June. Probably busier. A few of those appointments are already on the calendar.
I have two surgeries on the calendar in July and most likely a third surgery in August. One is a back surgery the others are cancer related. A couple of those Humpty Dumpty surgeries. I am going to be home a while. I guess if I cannot travel, they might as well do some cutting. I hear that parts are parts, but I wish they could use original manufacturer parts. I do not want to do anything to ruin the warranty on this great body of mine. Back in the day. Many calendars ago.
A guy called and told me that his records showed that the warranty on my car was expired. I told him it was not my car I was worried about, but I could sure use a warranty on my body. I explained that I was a classic 1959 model. Had all the extras you know. I just needed a little tune up to get that varoom back. He hung up on me. That is okay, because right now I have no room on my calendar for any other appointments.
The calendar does more than organize my days, weeks, and months. Birthdays, anniversaries and other important dates are found on the calendar. It reminds me to ask Christy if she sent my mother a birthday card. I do not know what I would do if I were not married. Probably miss a few birthdays. Also starve.
What is not marked on the calendar is that I am now starting year six with Brutus. It is this time of year where I try to reassess my situation. Where I am at. A review of my disease. Right now, things are not going my way. Improvement will be coming. I think. Here is a refresher along with some new information.
You know the story. When I was first diagnosed my medical team thought that things would be fine. We later learned that things were not as good as originally thought. About a year and a half after my diagnosis I had surgery. A few months later I was told that I could not be fixed. That my disease had spread and that I was not curable.
After my advanced disease diagnosis, I wanted to know my prognosis. My medical team did not like talking about my prognosis. I often heard that my life expectancy would depend on how well I responded to treatment.
I did not like that answer. That was the play it safe answer. They had a good idea of my timeline. I wanted no bullshit. How was I going to plan for things if I did not know?
This is what I learned.
My prognosis has two numbers. The numbers were low and just a little higher. Damn!
Six to nine years. My second urologist said that he had a few patients like me who had survived ten years. He said nothing about any of his patients like me surviving longer. Damn!
At that time, the prognosis did not mean that much to me. Nine years, well that is a long time. That would give them plenty of time to find something that would fix me. Well that has not happened. So, I am now thinking that nine years is not long enough.
My timeline has not changed. I was hoping that everything we have done would expand my timeline out beyond those nine years. That does not appear to be what has happened. Hopefully, the treatments, surgeries, and poisons have pushed me closer to the nine. I do realize that if we had not done anything that I would most likely not be here today. My medical team has given me time. I have seen more days, weeks, months, and years. I have used a few calendars.
Now I just said that my timeline has not changed, but in a way it has. My timeline is now one to four years. I think I would rather say that my prognosis is twelve to forty-eight. Now that sounds better to me.
Things are getting serious. Well I guess they always were, but I could put my disease in the background. Brutus now has more of my attention.
As I explained in a past essay that at this stage of my disease it is the doubling time that is the best indicator of life expectancy. My doubling time has not improved and remains just under four months. If the doubling time does not improve, well that tells me that I will most likely not maximize my timeline.
The life expectancy of a man with my doubling time is around six years. I hope that my 1959 body can find the varoom to prove them wrong. But I would be lying if I told you that I was not concerned.
I think of a comment made by my current urologist when we first met. He could tell that I was feeling good. He let me know that my disease could blow up at any time so I should enjoy these good times while I could. He told me that they would not last.
What I have just shared with you not many people besides Christy and the kids know. I have tried to stay away from this conversation. Thankfully not many people have asked. Usually when someone has asked, I have told them, “Who knows?”
I have debated with myself if I would ever share this information while living. Or if it would show up in one of the A.D. essays.
I feel that sometimes I pull back and do not share my feelings the way I had first intended when I started this blog. I worry about upsetting people. I do not want to make you feel bad.
Just remember what I say here stays here. We will not talk about it in person. It is much easier to say these things to the internet. Not knowing who reads these essays makes it easier.
I hope that my ramblings will make some sense. Putting my thoughts and feelings on paper always helps.
I have always realized that Brutus would have his day. It is tough knowing that day is getting closer.
What the calendar is reminding me is that we are getting deeper and deeper into my timeline. I can no longer tell myself that I have plenty of time.
The battle of living I am winning and will continue to win. The battle of life. Well, that is a different story. Brutus continues to grow at a fast rate. My medical team is concerned. I am worried. I am scared. I must believe that things will get better.
I look at it this way and as I have said before I will beat Brutus by living to the fullest. Enjoying each moment that I have. I know that one day this will all be over. But Brutus will not have won. He will not have won because I am not playing his game. In my mind living and life are two separate things. I must think that way or my theory does not work. I ask what good is life if you cannot live?
As a side note a few people like to point out that I might get hit by a bus before Brutus has his day. Why so many people use the bus analogy I am not sure. I do not think that many people die from getting hit by buses. I have seen men taken out by jealous husbands and boyfriends. I think that happens more often than getting hit by a bus. I think that it will be a jealous husband who gets me long before a bus. Just kidding…maybe.
Christy is not worried. She asks me what woman would want a 60-year-old man with cancer. She has a point there. She is a smart lady. She married me. Well I guess everyone is allowed one fuck up in their life.
Hope you laughed. I needed a break. Now back to the not so funny.
I think at times I get a little depressed. Christy says that I am more than a little depressed. I try to hide it.
I am not sure if I am now more depressed because of my timeline. I find that to be just a little depressing.
Am I more depressed because the coronavirus has cancelled many of my travel plans and I realize that I do not have extra years to do the things I wanted? That too is a little depressing. But I would give up my travel plans if the virus would stop killing people. Damn virus! Damn Brutus!
I hope to be able to again travel with Camden. He loves trains. We build tracks and play trains all the time. He loves watching trains.
I talked to him about one day getting on the train in KC and going to St. Louis. Making a few stops in between. In St. Louis we would of course see a Cards game. I have talked to him about that trip. He got extremely excited and gave me a big hug.
I want to make that train trip. I want to make that trip more than going to New York, New Orleans, Spring Training, fishing off the coast of Alabama, or going anywhere else. I want to be with the little man. I want that trip on the calendar.
When I feel comfortable traveling again, I will hit the road. The dates will be written on the calendar.
I have finished my third cup of coffee this morning. So now I feel that I need to go write down some of these ideas before they disappear.
Before getting up from the table I want to take a few more moments to again look at that whale on my calendar. I see a strong beautiful animal having fun enjoying living. Not worried about the obstacles of life but enjoying the moment. We should all do the same.
In a few days I will flip the page of the calendar to July. I will have the surgeries and make all the doctor appointments. The calendar is incredibly good in helping me keep track of where I need to be and when. The calendar does more than that. It motivates me. It gives me an urgency that I might not otherwise have.
I do not know what the future holds. I do not know what the next twelve, thirty, or forty-eight months will bring. Good things, I hope. I am prepared to make lemonade out of life’s lemons. Hopefully, we can share a glass. I would like to put that on my calendar.
After reading this do me a favor. Look at your calendar. What do you see? Cross some of that shit out and add some play dates. Live with some urgency. Be that whale. Jump out of the water and shine.
Oh, and if you are in the kitchen looking at the calendar treat yourself to a bowl of chocolate ice cream. Enjoy!
You and Erin look a lot a like in this picture!!! Love you both.
Thanks Julie. Hope to see you on the dance floor soon.
Your words are inspiring 💕
Thank you Kelly.
You look great bro! I too wish I could travel this virus sucks. I want to go back to Argentina as soon as this virus situation is over! Just an update. I just got back from my 4th annual Harley ride with Don Meyer in your home state of Missouri. Beautiful country.
Thanks Vince. Glad you were able to make the trip. I agree that Missouri is Beautiful Country. Looking forward to my next trip back to the Homeland.
Kevin thanks for the update. Also thanks for reminding me to make the most of your time, none of us really know how much time we have left on this earth.
Looking forward to having lunch again. When?
This a great picture – happy and holding up that nice cake – where’s the ice cream to accompany it?
Hi Linda, great to hear from you. That is a DQ chocolate ice cream cake. It has fudge and chocolate sprinkles in the middle. My kids know what I like. We have had a few over the years.
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Ahh, well it looked delicious Kevin and no ice cream on the side, but in the middle sounds like a winner to me. I’ve never had an ice-cream cake and believe it or not, I live right around the corner from the DQ! May you have many more holidays with those DQ chocolate ice cream cakes .
I was referred here by someone who follows you and I alike. I find your talks with Camden very personal and well thought out. I started my own blog as a way to find words after my stroke in 2012. Then, I found purpose in it with whatever popped into my mind. I was recently diagnosed with Stage IIIb Lung Cancer and blog daily about procedures, worries, etc. May God bless you sir. R. I.