Wednesday, October 12, 2016


After my last public post, Relentless Positivity, it came to my attention that if you don't know me personally, if we haven't had one-on-one conversations, you might have gotten the impression from my last few posts that I'm fatalistic about my prognosis. One person said that it's all been "doom and gloom," and that I simply accept what my oncologist says at face value. But if you know me well, if we've talked face to face or even via email, message, or text, you know that isn't true. But it concerns me that some may have that impression, so I want to address it with this post.

I've reread each post since Life Expectancy, and I can see why someone who doesn't know me, and hasn't interacted with me might get that impression. You can't be expected to get my sense of humor if you can't hear my tone of voice or see the look on my face. That's a drawback of the written word. This blog is a fluid document. Even going back just a week or two, there are wrong impressions of what's to come. This is a learning process for me. I'm still processing all of this, but I'm doing it right out loud, in front of everyone.

I feel like I should go back to the beginning, when I was first diagnosed, to give you context. Sometimes I make the mistake of assuming that all of you have read this blog from the beginning, and know the whole story. A year ago last August, after my initial diagnosis, a bone scan showed a suspicious spot on my left upper arm bone. That one spot, along with my score of nine out of ten on the Gleason aggressiveness scale, led my urologist at the time to classify me as Stage T2b with bone metastasis.

The fact that only one spot was found, so far away from the prostate, cast doubt on whether that spot really was cancer. That's why I wasn't diagnosed Stage 4 from the start. But I wasn't satisfied with the information and care I was getting from that urologist, and at the start of this year, my insurance changed. He didn't take my new insurance, so found an oncologist I liked and trusted who did. He ordered an MRI of the shoulder area, and that MRI revealed this image.

My oncologist consulted with a board of experts on my case. They decided that this spot was not, in fact, cancer. If it had been found on my hip bone, leg bones or spine, I would have been Stage 4 back then. But both my previous urologist and my current oncologist agreed that, given everything they knew, it was likely that I had microscopic metastasis that was too small to pick up on a scan. They proved to be right.

They never found out what that spot on my arm bone was. When my next bone scan was done, it had disappeared. Their best guess is that it was something to do with tendonitis.

My PSA began rising again a few months ago. After the second rise, my oncologist ordered a new bone scan and MRI to see if any new metastasis could be found. If not, we would go ahead with radiation treatment on my prostate. But that bone scan showed cancer spots on my spine. They are the bright spots you see in this image. The big bright spot down low is my cancerous prostate itself.

It was after seeing this image and the radiologist's report that my oncologist told me I was metastatic. It wasn't until a week later, when I met with my oncologist again, that I asked for a prognosis. He didn't volunteer it, I asked for it. This was after he had consulted with a colleague at the local university hospital regarding treatment options for me and whether there were any clinical trials that I'd be a good candidate for.

Soon thereafter, I got another blood draw as a baseline before I started taking Xtandi to try to push my PSA back down. That's when we found out that my PSA had nearly doubled in four weeks. The numbers are going in the wrong direction fast.

I review all of that information to try to give you a clearer picture of my attitude about my cancer. I don't just believe what I do because my doctor told me something one day. There was a lot leading up to it, and multiple experts have been consulted. I see the numbers, and I know what they mean.

Another concern that's been expressed is that, if I believe that I will die within two years, it will turn into a self-fulfilling prophecy. I was accused of being negative for accepting the fact that aggressive, Stage 4 cancer is terminal. To me, this is like accusing me of accepting that gravity is real, or that the world is round. I'm not being negative, just realistic.

I tried to address the concept of positive thinking in my last post, but I was so busy trying to be funny that I didn't do a very good job of it. So let me say what I believe it means to have a positive attitude, and why I think I have one.

First I'll tell you what I don't think a positive attitude is. I don't think it's believing that I can beat this cancer just by thinking I can. I don't believe in that kind of mind over matter, power of positive thinking nonsense. It's like saying that I can fly if I just believe enough when I jump off of a tall building.

Unless a cure is found, or God miraculously heals me - and I believe the latter is much more likely than the former - I don't believe it's possible for me to beat this. Maybe I'll get more time than is predicted for me. I may well exceed expectations. But ultimately, cancer will catch up with me. It's just a matter of time. It's gaining on me as we speak.

Here's what I think a positive attitude is. It's finding peace and joy in the middle of all of this. It's having passions and pursuing them. It's keeping my mind active, and doing everything I can, within my beliefs, to live as long as I can. All of those things are true for me.

I know that some are concerned that my interest in pursuing my lifelong passion and career, music, is ending. This isn't because I think I'm gonna be dead in a few minutes. My music career was in a state of sharp decline long before I knew I had cancer. At my age, no church will hire me as their music director. They all want a 30 year old with tattoos and a nose ring who plays acoustic guitar. I outline the rise and fall of my 28 year music career in two posts: Counting My Blessings #3: My Career and The Rest Of The Story. I feel very blessed to have had such a career. I'm grateful to God for all of it. Nothing lasts forever, especially in the music business. I have new passions now.

I've talked about my list of items that I need to get done while I still have time. This concerns some, as though I think I'm gonna drop dead before I get through my list. That's not it at all. It's the prospect of bone pain that I'm looking at. Maybe I'll get lucky on that front. I talked to a dear friend recently whose husband died of prostate cancer with mets to spine years ago. She said her husband had no pain until two or three months before he died. I'd take that in a heartbeat, though I'd rather it be two or three seconds!

The reason I'm so focused on doing the things that are important to me while I can is that once bone pain hits, if it does, I'll be forced to the sidelines, at least for a while. And at the rate my PSA is rising, I'm afraid that day may come sooner than I hope for. But that's why I won't take time off to undergo any treatments that keep me from doing those things.

So let me talk about what I am doing. I just finished my second week of taking Xtandi. I'll get another blood draw this Monday, and consult with my oncologist this Tuesday to see where we are.

I'm going to the dentist this afternoon to get three cavities filled. I'm doing that so I can start getting Xgeva shots once a month to strengthen my bones. If you don't think submitting to the dentist's chair and Novocaine shots into my gums constitutes fighting, I don't know what planet you're from.

On the alternative treatment front, I've ordered some reishi mushroom liquid to start taking as a supplement. I've read great things about that, and good friends have recommended it to me. I still expect to consult with a naturopathic doctor soon to see what other natural treatments may help me.

I haven't started the other natural alternative treatment that I've been teasing in my last two posts yet. I want to wait until I've started it so I can give you a better report on what it's like. It's my sincere hope that this treatment will keep me from having bone pain for a longer period, and may kill my cancer outright.

But again, much of this, including my attitude about these things, is thinking out loud. I'm still processing, and probably will be until my processor shuts down.

If I were stopping all treatment, giving up all of the things I love, withdrawing from the world, and just feeling sorry for myself, that, to me, would constitute a negative attitude. That would be giving up. That's not me.

Instead, I'm embracing this new chapter of my life. I'm believing that, with God's help, and undergoing treatment in accordance with my beliefs, I'll get the time I need to do the things that are important to me. If I get through my list and still feel good, I won't just lay down and die. Trust me. I'm having too much fun.

And I'll keep living on the love, encouragement and blessing that I receive from my wife, my family and my friends. It's hard to be negative when I'm surrounded by so much positivity.

I hope this clears things up for you if you feel I've been negative or defeatist about all of this. Yes, I do accept my prognosis, but at the same time, I'm doing everything I can short of debilitating treatment options and wholesale lifestyle change to add as much time as I can. Maybe a miracle is in the works. If so, no one will be happier about it than me. Just please be aware that this blog is a stream-of-consciousness account of this process. Thanks for being here with me while I process all of this in real time. #waroncancer

1 comment:

  1. Mark, i find your candor and approach to be inspiring. I think you are 'living out loud'. As i ask myself how would i deal with such a prognosis i can't answer truthfully if i would be as good in dealing with a terminal diagnosis. i think it would move me to action, but too bad it would have come to that instead of seizing the day now. I must say that those x-rays chilled me to the bone. Its kinda graphic proof that its no joke whats going on in your body. i am saddened but grateful to know you over the years. To have shared a bit of creativity, and our faith in Jesus.
    Talk to ya soon!