Tuesday, October 25, 2016

What Gives Me Hope


After I posted Life Expectancy, where I revealed the prognosis my doctor had given me, someone asked in a comment if my doctor had given me no hope. It wasn't the first or last time that someone equated hope with beating my cancer, or significantly extending my life. The comment bothered me, but I struggled to explain why. At that time, I think I chalked it up to my faith, though I didn't say so in a reply.

After I began taking Xtandi, I happened to run into a guy I've known for years. He asked how I was doing, and I told him I had just begun taking this new medication. He said that he wanted to give me hope. He attempted to do so by saying that he had been taking Xtandi for ten years, and it had kept his cancer under control for all of that time. The difference, for me, between his comment and the previous one is that this man is a pastor with very similar beliefs to mine. He used to be my Sunday School teacher. I've sung at a church he used to pastor. But though he believes very much as I do, he also equated hope with longer life.

If you've been reading this blog, you can probably guess that I don't place my hope in the possibility of living longer. Beating cancer is not what I hope for. I'll certainly take all the time that Xtandi and other treatments give me, but treatment doesn't give me hope. In yet another installment of what I'm calling my "Explaining Myself" series, I'll try to put into words why that is, and tell you what does give me hope. Because I haven't lost hope. Not at all. Hope has simply been redefined for me.

The trouble with placing my hope in Xtandi, or any other treatment, is this: If I hang my hopes on the low PSA number that I got after two weeks of taking it, what happens to my hope when my PSA inevitably starts to rise again? If that's where my hope is, I'm vulnerable to despair when the medication stops working. So I can't place my hope in that.

Dear friends tell me, from time to time, that they believe a cure will come in the near future. Call me cynical, but I don't believe for one minute that the for-profit health care system in the U.S. has any interest in finding a cure for cancer. Cancer treatment is too profitable. A cure would put a huge multi-billion dollar industry out of business.


Placing my hope in an industry that has a profit motive to keep me in treatment for the rest of my life would be foolish indeed. The guy who told me that Xtandi should give me hope also told me that it costs $9,000 per month. Why would such a profitable system give up a cash cow like that by coming out with a cure? No hope there for me.

I'll be starting an alternative treatment soon that I'll be telling you all about. I've heard and read amazing reports of people cured of their cancer with this treatment. So I'll be committing to it 100%, though it will be a major inconvenience. But I don't place my hope in that either. I'm just trying something to see if, by some chance, it will work for me. Or at least put off the day when I begin to have bone pain.

So what do I hope for, and what gives me hope? I'll try to answer those two questions one at a time.

Here's what I hope for. I hope to accomplish the things that are important to me. I've talked about my list of priorities in posts like A Sense Of Urgency. I'm hard at work on the next item on that list now; a big public performance that's coming up November 20th. I had my first rehearsal for it last Saturday, and I have another one this Thursday night. Saturday's rehearsal went very well, but it went six hours. Today is the first day since then that I've felt well rested and relatively normal. Future rehearsals shouldn't take that long, but each one takes all the energy I have to give, and it takes me a while to refill the fuel tank.

It may seem like I'm complaining, but I wouldn't give up this performance for anything. Neither would I give up another one that's coming up this Sunday with the kids I've been helping to coach. Because I'm more interested in living than merely surviving. This weekend will be an endurance test, but I'm going through with every event on my schedule because each one is very important to me. Giving up the things I love would hurt more than any fatigue I have to power through. In my mind, giving up those things would constitute defeat. I'm not ready to wave the white flag on those things yet.

It's not just checking things off of my list that I hope for. I also hope to spend as much time with the people I love as I possibly can. That's why I'm gonna do whatever it takes to be at my best for all of it; Thursday night's rehearsal, out late with friends Friday night, another rehearsal Saturday morning, dinner here with friends Saturday night, and the show with the kids on Sunday afternoon. None of it is out of a sense of obligation. All of these are labors of love. And that's the key word. Love.

Love is what gives me hope. The love that I feel for the people in my life is dwarfed by the love that I receive from them and so many more. Here are a couple of recent examples.

Facebook's recent practice of reminding users of anniversaries has not touched me very much until now. I was never a very active Facebook user before I went public with my cancer, so I haven't been getting many of these anniversary reminders until this week. As you may know from my last post, I went public with the news of my cancer, and launched a GoFundMe campaign to help us get by a year ago last Saturday, October 22nd. So since Saturday, I've been getting reminders from Facebook every day of the goodness and generosity of people who stepped up to help us in our time of need. That gives me a lot of hope.

Close friends have expressed to me recently how hard my cancer is on them. One told me that listening to a song we're playing together in my "bucket list set" made him cry. Another told me last week that she and her husband have never had a friend with a terminal illness before. It's hard on both of them. I'm sure that's true of everyone I love, and everyone who loves me. It makes my heart ache to put you through all of this. But the love we share makes this journey much easier, at least for me.

The sharp edges of my Christian beliefs have been softened over the course of the last year. One central tenet of Christianity that I have trouble accepting now is the one that says that we are all born with an evil, selfish nature. I was a poster boy for that belief for most of my life, but the last year has shown me that many people are basically generous, kind-hearted, and giving, no matter what their spiritual beliefs are. People care. Even when I did not care about them for so many years, they cared about me when the chips were down. Not all of them are Christians. Many of them are not. We are all born with the capacity to love, and with the capacity for self sacrifice, no matter what your church doctrine may say. That gives me hope.

Even so, my main source of hope is the God I worship. It's in his son Jesus Christ, and the Holy Spirit that I feel stirring within me every waking moment. I may question points of doctrine, but the reality of my spiritual experience is made more plain to me with each passing day.

I do not question the faith of my pastor friend who wanted to give me hope that a drug would keep me alive for years. I know that his ultimate hope is in the same God that I love. I know his attempt to give me hope was meant well. But I can't place my hope in a pharmaceutical drug, or an alternative treatment, or in the slim possibility of a cure. All of those things will eventually fail me.

Here's what never fails: God never fails. Love never fails. And God has never been more real to me. Neither has the reality of love. That's what gives me hope. #waroncancer

Yes, my soul, find rest in God; my hope comes from him. Psalm 62:5

Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:12

Let us hold unswervingly to the hope we profess, for he who promised is faithful. Hebrews 10:23

Saturday, October 22, 2016

Going Public


One year ago today, October 22nd, 2015, I went public with the news of my cancer. I had been diagnosed since the previous August, but I had kept the news private until then, only sharing it with family and close friends. I had never been the guy that everyone felt sorry for before, and I didn't want to be that guy. I was talking with one of my sisters about this early on, and expressed that sentiment to her. She pointed out to me that what I was feeling was pride. I realized that she was right.

To a Christian, pride is the root of all sin. According to our beliefs, every sin stems from pride; from the belief that we are self-sufficient, therefore we don't need God or anyone else. My sister's comment stung. The truth hurts. So I decided that I needed to be more public about my cancer.

Even so, I will admit that the main reason I put my cancer out on Facebook last October is that we had a financial need, and I didn't want to rely on a few friends to support us. So we launched a GoFundMe campaign, and shared that on Facebook, along with my announcement. The GoFundMe campaign was a great success, and the outpouring of support, love, and encouragement sustained us for many months.

But there was an even more important part of going public that I started at the same time. A couple of friends suggested that I start a CaringBridge journal to keep people updated on my progress. Writing my journal became my new passion, and that journal turned into this blog.

Do I need to tell you what a blessing this blog has been to me? Maybe not, but I'll try anyway. At first, with about a hundred faithful readers on CaringBridge, mostly comprised of family and friends, it was my main source of comfort and encouragement. I learned that I wasn't alone. I learned that I was loved. Back then, I would post something almost every day, and would receive encouraging comments and "hearts," CaringBridge's version of Likes. It became my lifeline. But soon, it wasn't enough.

That's when I copied my journal posts to this blog, and launched God's 2 By 4 last March. I began sharing my posts on my Facebook timeline, and in a prostate cancer support group in which I'm still active. That's when the floodgates really began to open for me.

Until then, I was merely telling my own story in an effort to receive encouragement and support. Nothing wrong with that, but it seems that God had more in mind for this blog. The more I wrote, and the more I shared, the more it seemed like I was helping my brothers and their loved ones by showing them that they weren't alone. This blog became less about encouraging me than it was about encouraging them. It remains that way today. That's the purpose of this post, and every post. I hope that, by being open about every aspect of this disease and my treatment, that what I write will encourage other families who are going through this.

With nearly every post, I get feedback that says that purpose is being fulfilled. Men with this disease, and the women in their lives tell me so, almost every time I post. I've been in ministry for much of my adult life, mostly music ministry. Now, I've been blessed to have this ministry. It's my calling, and it's a calling that I will not ignore or forsake. As a good friend who I met as a result of writing this blog told me, this is my ministry now. I'm so glad that I found it. I never would have if I hadn't taken the advice of a couple of friends to start journaling online about my cancer.

One of the greatest blessings of being as public about my cancer as I've been is that I've made new, dear friends. If I had remained private about it, I wouldn't know any of these people. I wouldn't receive any of the encouragement and love that I get from them. A few months ago, I charged one in particular - the same one who told me that this is my ministry now - with holding me accountable in what I write. More than once, she has gotten me back on track when I was veering off. That friend is Miki Friend Chambers. Thank you, Miki! I'm so happy to be your friend, and that you are my friend. This blog would not be what it is without you.

There are others that I consider friends now who I would not know at all if not for going public. I'm not going to name and tag all of you. You know who you are. I wouldn't know any of you if you or I had remained private about our cancer, and I can't imagine my life without you. You can testify as well as I can about the benefits of going public.

But it's not just about blogging. I realize that most don't have the passion for writing that I have. If we are Facebook friends, you know that I "check in" on Facebook when I'm at the oncologist's office, or getting some procedure done related to my cancer. The comments I receive when I do that get me through the day. It's an incredible thing. I'm so glad I got past my reticence about it, because it shows me that people really do care.

One couple that I've become very good friends with online during this process is Christopher and Lori Caminiti. If you're part of one of the prostate cancer support groups on Facebook, you know them very well. They are the best example I know of the benefits of going public. No one is more transparent about their ordeal than they are, and no one is more positive and uplifting in their posts, despite the difficult road that they travel. I asked them to contribute something to this post to tell what going public has meant to them.

When Christopher was diagnosed with Stage 4 Prostate Cancer on May 2, 2016, amidst all of the fear and confusion, he made a decision to be completely transparent about his journey involving this disease.  It was an innate reaction for him to go public, in the hope that he could at least make a difference in even one family’s life.  Here he was at age 46, facing his own mortality. The doctors said that it had likely been growing for 7-10 years. We had been to various physicians with ALL of the symptoms of prostate cancer over the past 7, so how did they miss it? Even our urologist at the time didn’t test his PSA!  It was absurd that simply due to his age none of them put the pieces together.

Christopher became 100% dedicated to ensuring that everyone he knew was aware of the symptoms, and to start testing at a younger age (even with no family history). He knew in order to make an impact he would have to be as transparent as possible about every hurdle and triumph that he faced. 

In doing so, the strangest thing happened.  The more we shared each detail of our journey, the more love, support, and prayers we received. It's what has carried us through thus far; well, that and the Man upstairs. Countless men have called or written to let Christopher know that because of him, they went in and had their exams and tests. He knows in his heart that being transparent was the right thing to do. It brings him peace knowing that by doing so, he accomplished what he set out to do. He'll continue to spread awareness, and hopes to save everyone he can from having to endure the same fate.

-Lori Caminiti

That's what I'm talking about. That's what this post is about. It's not about marking an anniversary. It's about using this occasion to encourage my brothers to do the same. I know you may not want to talk about it. It seems like about half of the people in the groups I frequent are not the men with the disease, but their wives and daughters. But I am here to tell you that if you will be open about this on social media, you won't believe the support you'll get and the friends you'll make. We are brothers here.

Your response to my last post was a great example. I hadn't realized what a long stretch of bad news there had been for the last month until I finally posted some really good news. The reaction was nothing short of amazing. When hundreds of people show how happy they are about some good news in your life, you realize that this is what Facebook was invented for. Not cat videos or politics or pictures of food, but this. The ability to connect with people in ways that were never possible before. For all of its flaws, none of what I'm talking about would have happened without it. Use it. That's all I'm saying.

I didn't want to be the guy that everyone felt sorry for, so I kept my cancer private for a while. But once I went public, I learned I wasn't that guy at all. I was the guy who was loved, supported, prayed for, and befriended. Going public is one of the best decisions I've ever made. #waroncancer #prayforchris

Tuesday, October 18, 2016

So Far, So Good


I got good news today. After months of rising PSA numbers, and after a Lupron shot a month ago that did nothing to stop a precipitous rise in that number, and after having taken Xtandi for only two weeks, my PSA result from yesterday's blood draw was 1.3. That's the lowest it's been since I was diagnosed. It's very good news indeed.

When I was diagnosed in August of 2015, my PSA was 15.8. Anything above 4.00 is considered abnormal. After my first Lupron shot back then (I almost said back there - Freudian slip), my PSA went down to 4.00, then later, 1.42. So 1.3 is a great number. My doctor and I are both surprised that I responded so quickly to Xtandi. He said he was "pumped" about it. Me too.

I've heard that Xtandi can take a while to show results. I went in today not knowing what to expect, but I would have been encouraged if the rise in my PSA had simply been slowed. Something between five and six would have been seen as a good sign by everyone involved. So this number makes us all very happy.

Before I went to my appointment today, I got a call from the pharmacy that sends Xtandi to me. They wanted to know if they should send my next bottle. I told the pharmacist to go ahead, that I was sure my oncologist would want me to continue taking it for a while regardless of today's result. Now I have a big fat confirmation that I made the right call.

One of my best friends says that Lupron has made me "sweet." I suppose it's true. I'm definitely more emotional, more sentimental, and more prone to bless others. When I told him I was starting on another testosterone blocker, he asked if it would make me "extra sweet." I don't think so, but maybe I haven't felt the full effects yet. If I get any sweeter, I'll be downright sickening.

The only side effect I've seen from Xtandi has been a couple of sores around the outside of my lips that went away after a few days. Not like a cold sore, in fact, I'm not sure what they were like. I put some lip balm on them before I went to bed one night last week, and they were gone the next morning. If that's as bad as side effects get from Xtandi, I can handle that.

The question is, the way my oncologist put it, how much mileage will I get out of Xtandi? Only time will tell. I'm due for my next Lupron shot in January. That's when I'll get my next PSA test. If my number is still low after the new year, so far, so good.

I saw a guy I know last week who's been on Xtandi for ten years, and he says it's kept his cancer under control for all of that time. Given how long Lupron alone worked for me, I have my doubts as to whether I'll get that much time from this drug. But we'll see. I'll take whatever time I get from it.

I still feel a little discomfort from the dental work I had done last week, so we will wait to start with the Xgeva shots to strengthen my bones against the cancer in my spine. Assuming we're still on track at that point, I'll get that shot the same day I get my next Lupron shot.

The image featured at the top of this post is of a prayer quilt that was made by some ladies at a church my wife and I attended for 34 years. I hadn't heard of prayer quilts before, but the pastor's wife contacted me and asked if they could make me one. We haven't attended this church for a few years now, but they wanted to offer us this blessing anyway, purely out of love and concern for my wife and me. There are knots tied on the front side of it, and each knot represents a prayer that was said for us. On the back side, this patch is sown in:


We were very touched by this gesture, as you can well imagine. The quilt hangs displayed in our home now as a reminder that we are loved and prayed for. That we are covered in prayer. We are very blessed.

This has been an eventful couple of months. From a rising PSA to a new bone scan and MRI; from finding out I'm Stage 4 and getting a disquieting prognosis to this news today. I've had a lot to write about. Now it seems that things will quiet down for a while. I won't have as much hard news to report. Hopefully. I hope you'll stay with me when the story isn't quite as exciting as it's been recently.

I don't know how long Xtandi will keep my cancer under control. I hope it's for a long, long time. But here is what I do know. I know that God is good. I know that I am loved. I know that I will keep writing this blog to give you this window on what it's like to fight this disease, at least for me. Please keep praying for me. I can feel your prayers.

Today is a very good day. I think it's the start of many good days to come. I can feel it. Love to you all, and to the One from who all good gifts come. #waroncancer

Wednesday, October 12, 2016

Processing...


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


Thursday, October 6, 2016

Relentless Positivity


Reaction to my last post has been mixed at best. I was trying to be funny about a subject that many don't want to acknowledge, let alone laugh about. Readership for The Terminal Discount has been about half of what's normal for this blog now. I think I understand why.

Some of my cancer brothers who are in the same boat with me thought it was great. But others, even some I'm very close to, have been silent. It seems they don't like to hear me talk this way. I don't blame them. It hits too close to home.

The thing is, I made a living at comedy for 28 years, writing song parodies. I look at everything through a comedic lens. Even my cancer. Early on in this blog, I regularly wrote funny posts. See Welcome To Womanhood and Ridiculous, But Normal.  But lately, it seems that all of my posts have been deadly serious for good reason. So I've been looking for opportunities to get some humor back into this blog. I'd rather laugh about this than cry, and I've done plenty of both.

Mark Twain once said, "Humor is tragedy plus time." I guess not enough time has passed for some. Maybe my attempt at humor was too soon for you. Or maybe it just wasn't funny. Another old saying is that if you have to explain a joke, it's not a very good one. Maybe that was the case with that post. But some of you got the joke, and that made me feel good. I especially enjoyed the comeback from one of my best friends, who I call "my comedy partner in another life." She didn't rebuke me for accepting reality. Instead, in a two sentence comment, she was funnier than I was. But that's typical for her. That's why we would've made a great comedy team in that parallel universe.  I would have been her straight man, for sure. She's the one who coined the phrase welcome to womanhood. She inspired the post with that name.

One thing I've always loved about comedy is that, unlike other art forms, there are no objective standards. In music, for example, it's possible to recognize great talent without liking the music that that talent produces. The reverse is just as possible. I experience it all the time. There are bands for whom I don't have a high opinion of their musicianship, but I enjoy their music anyway. But in comedy, there is only one standard: It makes you laugh, or it doesn't. That's it.

You know you've failed as a comedy writer when you share a post that you meant to be funny in six different places on Facebook, and you don't get one "Ha ha" reaction. Plenty of likes, and a few hearts, but no ha has. The post got some "sads" too. It's not a good sign when a post that you intended to be funny gets sads, but no ha has.

It's not the ones who didn't think my last post was funny simply because they love me too much to laugh about my terminal illness that bother me. It's the ones who rebuked me for accepting the reality of my prognosis, especially in light of my last PSA result. I was told not to be negative. I was told not to count myself out. I was told that my doctor doesn't know anything. All of these comments, and others, were meant well. But they don't encourage me, as I think they were intended to do.

I think one of the most useful posts for cancer patients that I've written was one called What Not To Say To A Prostate Cancer Patient. The examples in that post are not all from me; I collected them from a support group, from the answers to a question that was posed there. One answer that came through loud and clear in that group is that cheerleading is not appreciated. A man with aggressive Stage 4 prostate cancer doesn't want to hear about your relative or friend whose cancer was caught early and is fine now. At least I don't. I was subjected to that by someone I met for the first time on Tuesday.

I had an appointment with a dentist to make sure that I can go ahead and get Xgeva shots to strengthen my bones. They took x-rays of my jaw, and found that I don't need any extractions or root canals. So I can go ahead with Xgeva. While I was there, I got my teeth cleaned. There were a few minor issues that don't cause me any pain or problems, but they wanted me to do everything they recommended, naturally. I talked with the hygenist who was cleaning my teeth, and explained to her that, given my prognosis, I wasn't interested in doing any dental work unless it was absolutely necessary.

If you've had cancer, you know what she did next. She proceeded to tell me stories of cancer patients she knew who beat the odds. I asked her how advanced and how aggressive their cancers were, and she had no answer. But she still wanted to give me a pep talk. I didn't appreciate it.

I've always had a problem with what I call relentless positivity, which runs rampant in the business world and the church world. I used to joke about a boss of mine from long ago who was so sickeningly positive, I alleged that if I told him my house burned down, he'd say, "Good!" It infects our language. Nothing is allowed to be called a problem anymore. Now there are no more problems, only challenges. As though a problem is something that can't be solved. But in math, problems are meant to be solved.

Cancer is not a challenge. It's a problem. In many cases, it's a problem that can be solved. But not in every case. To think otherwise is to ignore the facts. It feeds into the myth that prostate cancer is "the good cancer." I'm not going to quote statistics here. You can find them easily on the Google machine.

If your prostate cancer is as aggressive as mine, I am not saying that your problem can't be solved, especially if you are going whole hog with every treatment and lifestyle change possible. I'm cheering you on as hard as I can. But as for me, I don't believe my problem will be solved unless God solves it. I'm not pursuing every treatment available to me, or making radical changes to an already healthy lifestyle, for my own personal reasons, and with my wife's support. For me, accepting my prognosis is accepting reality. And all good jokes are based in reality.

If you know me personally, you know how much I love to make inappropriate jokes. I love to make them at my own expense, especially now. I was talking with my Comedy Partner In Another Life recently about a place both of us used to frequent, but neither of us wants to return to. I told her the only way I'll go back there is in an urn. She said I was terrible, but it made her laugh, and that made me happy. It's who I am.

Every day, people continue to read the introduction to this blog. I love that. In that introduction, I promise that you'll find hope, love, faith, and grace here. And jokes. I want this blog to make you laugh, think, and be inspired. I try my best to achieve that with every post. Sometimes I hit a home run, and other times I seem to strike out at T-Ball. I actually did that as a kid once.

Even if you didn't think my last post was funny, I think you might get a few chuckles from my next, when I talk about a new alternative treatment I'll be starting soon. There's plenty of comedy to be found in the treatment itself and the way it's administered. I hope you agree.

I don't think anyone who has read this blog with any regularity would say that I don't have a positive attitude. Someone told me yesterday that I'm a light to everyone around me. It was one of the nicest things anyone's ever said to me. It's just relentless positivity that I reject. To me, it equals ignoring reality. I know that it will take a miracle to save my life, given my treatment and lifestyle choices, and the sheer numbers. I believe that miracle is possible. I believe that I can extend my life by doing some of the things I'm doing. But I'm also preparing for the worst, because I have to. It would be irresponsible of me not to.

While I'm at it, I'm gonna make jokes about it. If you don't laugh because you think all of us can beat this disease if we just have a positive attitude, you're missing the point. But if you don't laugh because you love me too much to find humor in the possibility of losing me in a year or two, I love you right back. #waroncancer

Tuesday, October 4, 2016

The Terminal Discount


We all like discounts. We love getting a special price or special treatment. Somehow, given my condition and prognosis, I feel like I should get some really good deals. It seems to me there should be some compassion in the business world and government for people like me. It's just a matter of fairness. But life isn't fair, as I know all too well.

I know that nobody wants to hear this, but the fact is that I have a terminal illness. Barring a miracle or a natural cure, I won't be here a few years from now. I can't help but see everything in that light these days.

I didn't intend for the sharp rise in my PSA from 2.7 to 4.77 in four weeks to be the headline of my last post, but among my cancer brothers and sisters, that news was met with near-unanimous dismay. That kind of rise is what we all fear. I have hope that the Xtandi horse pills I'm taking will push the number back down for a while, but we'll see.

Things like senior discounts bother me now. When I turned 60, I relished the thought that I was only five years away from being able to get the senior discount at movies, our favorite state park, and many other places. But when I see those discounts now, and realize I probably will never live to use them, I feel like there should be a discount for people like me. People who aren't expected to live to age 65. I call it the Terminal Discount.

But how would I get that discount? Show my Terminal Card? There's no such thing. I wish there were. I'd use that card whenever I thought it would help. I've already tried to use it, and I don't even have one.

Of course, I'm trying to push that terminal date as far in the future as I can. I'll begin a new treatment this week, which I will talk about in depth in my next post. I hope with all of my heart that I'm not as terminal as standard Western medicine says I am. I believe in a God who can extend my life for as long as he sees fit. But Regal Cinemas don't know that. Neither does the U.S. government, the State of Colorado, Apple, nor the company that repaired our boiler last week. I should be able to show them my Terminal Card and get a sweetheart deal. Shouldn't I?

We've needed to heat our house this week for the first time this season. Our house has a boiler, rather than a furnace. The boiler was running, and the thermostats were set, but the thermostats weren't triggering the boiler to fire up and heat our home. I called a local company to come and fix the problem. The problem was fixed, but at a high price. When the company called later that day to ask if I was satisfied, I tried to play the Terminal Card. I asked if they had a senior discount, and they said they did. I told them my condition, and our financial situation, but the most they were willing to do was knock sixty dollars off a bill that was nearly a thousand dollars. And that was with a coupon for a hundred dollars off.

I'm a longtime Mac user and Apple enthusiast. I have an old Mac in my recording studio, because I still use old music software that isn't available for operating systems newer than the one I'm using. I'm writing this post on that 2006 Mac Pro tower now. I'll only need to use it for a few more months, until my last CD project is finished next spring. Then, when I sell my recording equipment, I can get a new MacBook that will be my main computer. I won't need a desktop tower anymore.

But I unknowingly threw a monkey wrench into that plan when I updated my iPhone to iOS 10. It was only after updating my phone that I learned that iOS 10 is incompatible with the operating system I'm using on my old Mac. I can't update this machine to an operating system high enough to sync with my phone. So now, I can't transfer photos to my computer or sync with iTunes.

Apple has a long history of doing this to users of old devices as a way of forcing us to buy new stuff. I used to shrug it off, but not anymore. It seems unfair to those who can't afford a new computer. We shouldn't be forced to buy one to do basic things like transfer photos. Especially when there was no warning whatsoever that updating my phone would cause this problem. So I called Apple.

I spoke to a very kind, compassionate person who tried her best to help me. But there was no help available. I told her my situation. Surely there's a program to provide free MacBooks to the terminally ill! Not so much. Not even a Terminal Discount. So, I'm stuck not being able to take pictures with my iPhone, which is my main camera, because I can't transfer them to my computer. I don't want to store them in iCloud. I don't trust iCloud. First World problems, I know.

Then there's the matter of my Social Security benefits. According to the U.S, government's actuarial tables, I won't live long enough to receive all of the benefits I have coming. I've paid into Social Security my whole working life. That should be my money. In a case like mine, I should have the option of collecting all of the money I've paid in. I'll take it in a lump sum, thank you very much. Wouldn't that be nice? I've tried to use humor in this post, but that idea is real comedy.

I think this should apply to everyone with a terminal illness, regardless of age. If you're not expected to live long enough to get the benefits of old age, you should get those benefits now, whether it's as big as a lump sum from the government or as small as a discounted movie ticket. It should be a matter of policy for both the private and public sectors. Just my opinion.

But while it's unrealistic to expect compassion from large institutions, it overflows from people. Government may not care, but people do. Multinational corporations may not have consideration for the terminally ill the way they do for seniors, but love from family and friends is there without conditions. We may have had to bite the bullet to repair our boiler, but we know that God will supply our needs. But I still wish I could whip out my Terminal Card at the Apple store. #waroncancer

Thursday, September 29, 2016

Next Steps


I began what I regard as the next phase of my treatment today. I took my first four Xtandi capsules this morning. The bottle of large capsules, which I would call "horse pills," arrived last Friday, but I was concerned about a potential side effect which was listed in the literature that came with the bottle. So I set up a consultation with a nurse practitioner in my oncologist's office to discuss my concerns before I started taking them. That appointment was yesterday morning.

To review, Xtandi is a testosterone blocker. It's supposed to help Lupron hold my PSA down, and get my cancer back under control for a while. The side effect that I was concerned about was the possibility of seizures, which is listed very prominently in the brochure. Here is a quote:

Xtandi may cause serious side effects including seizure. If you take Xtandi, you may be at risk of having a seizure. Avoid activities where losing consciousness could seriously harm you or someone else.

Avoid activities where losing consciousness could seriously harm me or someone else? Like driving? As I read that warning on Friday, my wife and I were getting ready to visit friends in Breckenridge, Colorado, which is in the mountains, about 90 minutes away from where we live. Visions of having a seizure while driving on a winding mountain road with my wife in the car started dancing in my head.

This would not do. I called my oncologist's office, and talked with someone who couldn't answer all of my questions. So I made an appointment to go to their offices yesterday and talk with a nurse practitioner. She assured me that I was not at risk for seizures from this medication. It's those who have a history of seizures, or those with brain injuries who are at risk.

That was the second of two medical appointments I had yesterday morning. The first was with a dental hygenist. It took place in the radiation oncology office where I've consulted about radiation treatment twice, and where I met a nutritionist months ago when I was having trouble keeping my weight up. As I've mentioned before, my oncologist wants to put me on a bone-strengthening drug called Xvega. But they need to make sure I'm in good dental health before they start me on it.

It's not surprising that I put off finding a dentist. I hate going to the dentist so much that I'll procrastinate looking for one even when my life depends on it. So the doctors took matters into their own hands. They set up an exam right there in the office, and found a dentist for me. They want me to get a cleaning and take care of any problems that might exist before I start with Xgeva.

The hygenist found a small place where part of a filling is missing, so I know I'll need to get that done. I just hope there isn't any more than that. I made an appointment with the dentist for this coming Tuesday.

When I walked into the office for the dental exam, the receptionist called me by name. She may have had my name in front of her, since I had an appointment at that time, but I've had a friendly relationship with this receptionist for a while, because I've stopped in there a few times in an effort to take some of my ice cream to the nutritionist who helped me gain back the weight I lost. But still, I was surprised to hear her volunteer my name without needing to ask.

My appointment with the nurse practitioner was after this one, in the same medical building, but on a different floor. This is the oncology office I visit most frequently. As soon as I entered and began to sign in, the lady at the front desk simply pulled my chart and started logging me in. She didn't need to ask my name or birth date. Is it a good thing when you're so well known at two cancer treatment centers? On the one hand, yes, it's good to have personal relationships with your medical team. But on the other, I'd much rather be well known at a record label.

The assurances I received from the nurse practitioner regarding side effects from Xtandi was not the only reason I was motivated to start taking it today, without further delay. At the end of our conversation, she asked if I wanted the results from my last blood draw. You may remember that my oncologist wanted a baseline test before I start taking Xtandi, so we know where we're starting.

The two blood draws I had prior to this one showed my PSA rising. The first rise was from 1.42 to 1.97, an increase of five tenths of a point in five months. My next test result, on August 31st, was 2.7; up seven tenths of a point in six weeks. That was what motivated my oncologist to order the bone scan that confirmed my metastasis.

So when the nurse practitioner asked if I wanted to know the result of my blood draw last Friday, of course I said yes. It's 4.77; up more than two full points in four weeks. So I'm taking my pills. I only hope they drive that number back down some, and keep it from continuing to grow at an exponential rate. I really hope that, when I have my next blood draw in about six weeks, I'll have better news for you.

My main motivation to agree to these treatments that I am predisposed to distrust is not simply to save my own skin. I don't believe that's possible at this point. I'm doing these things to try to get a little more time. I'm doing them for my loved ones.

That trip to Breckenridge last weekend that I mentioned above was a long-anticipated trip to visit close friends, and be there for their house warming party. Our friends had moved there a month earlier. Other good friends of ours were there as well, and a couple of new friendships were established. It was a wonderful time. It was soul-nourishing on many levels.

We stayed over Saturday night, and had breakfast at the new home of our dear friends. I suspected that they had not heard my most recent news, so I felt obligated to tell them about my prognosis. I'm afraid I broke someone's heart yet again. Tears were shed.

It's for people like this that I do what I'm doing. I'm not taking these horse pills for me. I'm certainly not going to the dentist for me. Once I'm cleared by the dentist, I won't be getting an injection once a month to strengthen my bones for me. I do these things for my wife. I do them for my family. I do them for the one I made cry on Sunday morning. I do them for the loved one who visited on Monday, and for everyone else who wants to know that I'm not giving up. It may not seem like it to you, but I'm fighting this. But I'm not doing it for me, I'm doing it for you.

These are the next steps in my treatment. There will be more, and I'll tell you about all of them. Sometimes, to me, these things seem like trying to hold back the tide. The tide will come in, no matter how much I try to hold it back. But I want to spend as much time on the beach with you as I can before that happens. #waroncancer



Monday, September 26, 2016

Choosing My Battles


After my last post, I was asked two valid questions that should be addressed. One question was about my diet. The other asked how my wife felt about my treatment choices. I'll try to answer both of these questions in this post. As it turns out, the two questions are related.

Part of me wants to think I shouldn't have to explain myself, or defend choices I make regarding my own health. But I've committed to being as open about this entire process as I can be. I hope that if I share my thought process on all of these things, maybe it will be easier for you to understand and support my conclusions.

In my last post, I may have misled some of you into thinking I'm refusing treatment. I'm not. I'm still on hormone treatment, and will be for the rest of my life. Oh, joy. I'm getting a dental exam on Wednesday to determine whether I can start taking a bone-strengthening drug once a month. And once my doctors assure me to my satisfaction that I'll escape a certain side effect, I expect to start taking the testosterone blocker Xtandi. I may have made a mistake using the word treatment too many times when I should have used the word chemo. It's chemo that I don't have time to take months off for right now, not treatment as a whole.

In my last post, I said that I wasn't going to do "radical lifestyle or diet change." One person asked me about that, saying he supported my decision not to do chemo, but didn't understand why I wouldn't eat a healthy diet. I realized that I haven't talked about my diet much in this blog. Diet is very important, as we all know. I personally believe that the reason we have so much cancer in Western societies is because of our diet. We eat way too much processed food. So I am sympathetic to those who say that we should eat in certain ways to avoid and defeat cancer.

But my cancer was not caused by outside factors. I have prostate cancer because it runs in my family. It wasn't because of any poor lifestyle choices on my part. It was just the luck of the draw, or the lack thereof.

My wife and I are very health conscious. We eat a very healthy diet. My wife has not eaten beef since the 1980's, and I became unable to eat beef after a few years of that myself, since she stopped cooking it at home. I'm reminded of a line from Pulp Fiction where Samuel L. Jackson's character says, "My girlfriend's a vegetarian, which basically makes me one." That's pretty much how it works.

If you don't eat beef, you lose the enzymes in your digestive system that break beef down. If I eat a hamburger after a certain time of day, I can't sleep that night. But recently, I've started gradually reintroducing beef into my diet so I can have a hamburger when the situation calls for it. If I have a burger once every two or three months, that's a lot for me. I still eat very little beef.

We eat a lot of salads. We eat organic as much as we can. We use filtered water for everything, to the point of having a water filter on our shower, because everything that goes on your skin gets absorbed into your body. Instead of using commercial ammonia-based window cleaners, I use a combination of vinegar and water. It works great. We never heat food in plastic, or use Teflon, because it transfers plastic molecules into food, which causes cancer. I don't spray my lawn with chemicals to kill weeds, because I don't believe in putting poisons in the ground water to make my lawn look prettier.

I could keep going, but I won't. You get the picture. When I talk about not wanting to do radical lifestyle or diet change, bear in mind that we already take measures to remain healthy that many do not.

But we do eat meat. We eat poultry and seafood. Pork occasionally. I'll have two thin slices of bacon with breakfast about twice a week. We always try to go with wild-caught seafood, rather than farm-raised. We eat a lot of chicken, and we also eat turkey throughout the year.

There's lots of information promoting various special diets to fight cancer. If I were younger, and in a different place in life, I might consider one of those. But at this point in my life, I'm not going vegan. I'm not giving up meat or dairy. It's a little difficult to go vegan when you're going into the ice cream business. I'm the chief taste tester around here.

One weakness I have is for sweets. That's a change I'm willing to make. I can live without candy if I have to. I cut sugar out of my diet once before, and I can do it again. That's hard to do just before Halloween and Christmas, but I can do it. I still need to make and consume a few more batches of my chocolate ice cream to get the recipe right, but after that, I can back off the ice cream binge I've been on.

When I was struggling to keep my weight up, some of the rules of healthy eating I had adopted went out the window. Keeping my weight up was more important than watching my sugar intake. But my weight is not a problem for now, so maybe this gives me an opportunity to get back on the wagon when it comes to sugar.

The trouble is, while I agree that I should have healthy eating habits and eat mindfully, I don't really believe that giving up the moderate amounts of "bad" food I eat will make much difference in how long I live. I'm afraid if I went on a special plant-based diet, and gave up so many of the foods I love, all I'd be doing is making my limited remaining time here less enjoyable. I want my coffee in the morning. I want my one beer each night. That's not what will kill me. I know exactly what will kill me. In some ways, that's liberating.

So when it comes to diet, I will continue to eat the same healthy way that I have for decades. You won't see me anywhere near a corn dog or a bucket of KFC. But I will continue to eat eggs, cheese, bread, and once in a while, even a microwave popcorn. So sue me.

I haven't even gotten to the second question yet. I'll try to make this part brief. One dear lady asked how my wife feels about my not doing chemo. Her husband has prostate cancer, and she wants him to do everything he can to stay here for as long as he can. Very understandable. I think she may have gotten the impression that I'm refusing all treatment. It's only chemo that I'm refusing at this point.

I don't think my oncologist is recommending chemo for me presently anyway. In the literature for Xtandi, which I received last Friday, a study was highlighted which showed that Xtandi delayed the time before patients began chemotherapy, from 11 months to 28 months, on average. That tells me that the purpose of Xtandi is to enable prostate cancer patients like me to put off the day when chemo is recommended.

Having said that, the decision to submit to chemotherapy or not is a personal one. It's a choice I wouldn't make without my wife's support.

In the early days of my cancer journey, I was talking with a pastor friend of mine. I told him about a cancer patient who was told she only had a few months to live unless she did chemo. She refused, and said something that made a big impression on me. I tell this story in my post, "My Complicated History With Divine Healing." She said, "God's either gonna heal me, or he's not. I'm OK either way." I came away from that hoping that I would have the same attitude were I ever in that situation.

It turned out that I did have that attitude when the time came. When I related this story to my pastor friend, he said, "That's a great attitude, Mark. As long as your wife is there with you." That gave me pause. It was wise counsel, and what he said should have been obvious to me before he said it. I knew I needed to have a conversation with her right away.

That same night, or maybe the next, I sat down with my wife and told her that, if she wanted me to, I would go through every treatment they threw at me to stay here for her for as long as I could. She said she didn't want me to suffer from treatment. She's always been the more heath conscious of us. Almost every health measure I described above in our household was started by her. She hates the idea of pumping poison into my body, knowing what it would put me through, physically. She shares my suspicion of the pharmaceutical industry and the for-profit health care system.

Initially, she wanted me to undergo radiation treatment. But now that we know radiation probably would not have stopped me from being Stage 4, we're both glad I didn't do that. My wife supports the treatment choices I'm making, and she supports my decision not to start chemotherapy.

I didn't intend for this to happen, but looking over this post, I now realize it's a tribute to my wife. She's the one who got me eating healthy years ago. She's the one who reads the health news while I obsess over sports and politics. She knows how healthy my diet is, and doesn't expect me to upend our whole lifestyle in what I believe would be a vain effort to add a little more time.

We're choosing our battles. I support every one of my cancer brothers and sisters who make their choices about how to battle this disease. I hope you support me in mine. I know my wife does. #waroncancer

Friday, September 23, 2016

A Sense Of Urgency


This familiar poem by Robert Frost has great meaning for me now. At this point in my life, I feel that I have promises to keep. Months ago, I fervently wished that I could simply stop working and devote all of my attention to my illness. I thought it unfair that others could do this, but I had to keep working. But I don't feel that way anymore. Now, the limited time I've been given fills me with a sense of urgency. There are tasks that must be completed while I still have time. There are goals I want to meet. I have promises to keep, and miles to go before I sleep.

I've talked in this blog about having a legacy to protect, and about wanting to finish well. I think it's time to explain what I mean by that. It's time to spell it out for you, rather than talk in generalities. This will help you know how to pray for me specifically, if you are so inclined.

But first, I want to address my prognosis again; or rather, my reaction to it. I think some of you may have the impression that I simply take my oncologist's word as gospel, and that I have a fatalistic attitude. Nothing could be further from the truth. I don't believe in fate, I believe in a personal God who lets us make our own choices. I believe God has placed me here for a purpose. I can choose to be angry at God for my circumstances, or I can choose to do my best to fulfill his purpose for me. I choose the latter.

I don't want to derail this post by getting too far into this subject. That will be for another post. I'll just briefly try to explain why I accept this prognosis. First, ever since I was first diagnosed, my nature has been to accept my cancer rather than fight. Most cancer patients are fighters, but a few accept. I just happened to fall into the "accept" camp rather than the "fight" camp.

Second, I've had a strong feeling from early on in this process that I have about two years. So when I received a prognosis to that effect, it came as no surprise. I've learned to trust my feelings since this started. I could be wrong, and so could my oncologist. But I don't feel like he is wrong, or that I am.

Third, there are the statistics. The numbers don't lie. There are exceptions to every rule, but everybody doesn't get to be the exception. If they did, the exception would become the rule. I believe in miracles, but I'm not counting on one.

And fourth, I am unwilling to do some of the things that claim to prolong life for people in my circumstance. I won't do chemo. I won't do radical lifestyle or diet change. My priority is not living longer, it's getting my work done. It's trying my best to set my wife up financially while I can, because I haven't done that very well so far. It's doing what I can, while I can. That's what the rest of 2016 and all of 2017 will be about for me, God willing.

While I understand that my doctor may be wrong, and I could end up living much longer than he predicts, I think it would be very unwise for me to disregard what he says. If I spend the next year and a half doing all of these things that may or may not extend my life, and it doesn't work, I will die with regrets. I'll look back from my death bed and wish I had pursued my passions, and answered God's call on my life. I'd rather die sooner and feel like I've done all I could than live longer and die with unfinished business.

I'm an NFL football fan, and this being football season, I can't help but see this in those terms. When a team is 14 points behind with five minutes remaining in the game, if they want to have a chance of winning, they start to play with a sense of urgency. They go into the "hurry up offense." They throw the ball more, and try to get out of bounds to stop the clock. If they don't have that sense of urgency, they'll probably lose. That's how I feel. It's late in the fourth quarter, and I'm way behind. I've got to put some points on the board before the clock runs out. So I have a sense of urgency.

I hesitate to give you my actual to-do list, for fear that some of it may seem frivolous, or a pipe dream. But all of these things are very important to me. If I don't get all of these done, I will regret it.

I have a big public performance coming up this November. I'm lining up the musicians for it now, and soon I'll schedule rehearsals for it. I've put together a set of "bucket list" songs that I've always wanted to sing. The total program, including talking, will run about 90 minutes. I like to talk, in case you hadn't noticed. Many of my musician friends will participate. I hope it isn't my final major performance, but I have to treat it like it is. This event will test the limits of my endurance, but for me, it's not optional. If I skip it, I'll regret it. That's the first item on the agenda.

Early next year, I'll write and produce my last CD project. It will be volume 20 of a series that I've produced since the 1990's. This CD series is the main reason that I'm as well-known in certain circles as I am. It's my legacy, professionally and ministerially. I want to finish it well, and then hand the franchise off to the next person who will take it over. If I don't get volume 20 done, and have to end with volume 19, which I finished a few months ago, it's not the end of the world. But 20 is a nice round number. It will make me happy if I can get one more really good CD project out. That's the second item.

In July of 2017, my wife and I will celebrate our 40th wedding anniversary. We'll get pictures taken and throw a big party with a live band at our home. We've done these types of events for big occasions before, the last one being for my 60th birthday party in May of 2015. This event will be a huge undertaking for us. But again, it's not optional. I'm not going to set this aside in favor of treatment. I wouldn't trade the memories of my birthday party for anything, even more time on this earth. Same for this party, as it will probably be the last one.

There are two more big items on the agenda. These will happen in no particular order, but must be done while I can still do them. I intend to turn this blog into a book, and I have a chance to put the gourmet dark chocolate ice cream I've made for years on the market. My hope is that, if successful, these will help support my wife after I'm gone. If a miracle happens, and I'm here longer than two years, they'll become my career in retirement.

These are just the highlights. I also look forward to continuing to mentor the young musicians I've been working with. I have to sell my recording equipment. I have to help my wife get rid of the clutter that inevitably builds up when you live in the same house for 16 years. I have to simplify the technology in this house, which I've always been in charge of, so it's a setup that my wife can operate easily in my absence. And I must continue writing this blog. Even after the book is out, I will continue telling my story for as long as I can.

While all of this is going on, my goal is to spend as much time as I can with the people I love, and who love me. As much as the work matters to me, the people matter much more.

That's why I have such a sense of urgency. That's why I so hope that I have at least a year with no pain. That's why I don't have time to do chemo. There's too much to do. It's more important to me to get these things done than it is to live longer.

So now you know how to pray for me more specifically. You can pray that I'll continue to have no pain so I can get these things done. You can pray that I'll have the strength and endurance to shine in my upcoming performance. You can pray that volume 20 of the CD series will be the best I've ever done. You can pray that my ice cream business will be a success, and that God will use my story to reach many. If you will pray that God will help me get all of these things done, I will be forever grateful to you, as I already am.

Can you feel my sense of urgency? Do you understand now why I won't set these things aside in order to try to get a little more time? I have promises to keep, and miles to go before I sleep. #waroncancer

Wednesday, September 21, 2016

Just What The Doctor Ordered


It's been quite a week since my last post. Since my prognosis last Thursday, I've had one good day after another. Until today. But don't worry, my bad day today is nothing serious. Just a disappointment. Just another case of accepting my limitations, which is not easy for me to do.

I should begin by clarifying the prognosis I told you about last Thursday. When I said that my oncologist gives me three to five years if I respond well to treatment, and one to two years if I don't, I left out what his implication was. He was really saying that if I start responding to future treatments better than I've responded to Lupron, I could get three to five years. But if I burn through those treatments as fast as I've burned through Lupron, then it will probably be more like a year or two. All the more reason to make good use of the time I have.

The day after I received that news, Friday, I had a rehearsal for the wedding I officiated on Sunday. The rehearsal was short and easy, concluded by dinner with close friends. Just what the doctor ordered.

On Saturday, my wife and I went to see our closest friend lead worship at her new church. I'm more proud of Nikki than I can possibly express. Since I had a wedding to perform on Sunday morning, this was our church service for the weekend, and it was just what I needed that day. It was just what the doctor ordered.

Then, on Sunday morning, I experienced one of the greatest honors of my life. I got to be the officiant at the wedding of a friend who is like family to us. She and her fiancee trusted me to write the ceremony and not show most of it to them ahead of time. They were willing to be surprised at their own wedding ceremony. Every part of that morning, from the preparation time beforehand to the reception afterward, was a blessing. I'll never forget that day, and I'll always be grateful for it, and for the people who let me be part of it. Again, it was just what the doctor ordered.

There's one more wedding ceremony I'd like to perform. You know who you are.

The wedding, as wonderful as it was, exhausted me. I was completely wiped out afterward. But I couldn't take a nap because we had close friends coming over to watch the Denver Broncos game. So I powered through it, and caught a second wind. An exciting Broncos win is always what the doctor ordered for me. Especially watching it with friends like Paul and Denise. All in all, a great day.

Not to be outdone by ourselves, we had company over again on Monday. Three more close friends. I'm starting to feel self-conscious about the number of close friends we have. It's an embarrassment of riches, really. This dinner had the added benefit for me of being surrounded by four beautiful women. Trust me, even on hormone treatment, this was exactly what the doctor ordered.

Yesterday, Tuesday, my wife and I spent the day at a nearby state park and reservoir. We have a spot there that we like, and we enjoy spending days there, hanging out, eating, listening to music, and reading our books. We take the dog with us. It was a perfect day on the beach, or as close as we get to beach in Denver, Colorado. It probably was our last day there this season, and it may well have been the best day we had there this year. It was very therapeutic. Just what the doctor ordered.

Then came today. The day I found out what my doctor really ordered. But first, I had an allergy attack at 4:30 this morning. I have pollen allergies in the fall. That attack woke me up and kept me awake, so I didn't get a good night's sleep, and I've been very fatigued all day. As a friend put it to me today, I got started with the tank on empty. My allergy attack continued for the rest of the day until I reached my therapist's office just before 2:00 this afternoon.

This blog has been, in some ways, one long account of the effects of Lupron on my body. Fatigue is a huge side effect. It affects my ability to do things I want to do. Today is a prime example.

Today of all days, I have tickets to a concert. I've been waiting for years to see a band I like come to Denver, and they're finally here tonight. I bought tickets a couple of months ago. I've really been looking forward to it. But now, I can't go. I just don't have the energy.

One problem is it's a general admission venue with very few seats. What I've done in the past for concerts like that is get in line early, so I can get a seat. Like three hours before the doors open. There's no way I can do that today. It seems like something as simple as that, which was no problem for me two years ago, is out of reach now.

Another problem is it starts late. The band I want to see probably won't start playing until 9:30 PM or later. That's too late for me, especially today.

Rock concerts have been my favorite pastime for as long as I've been old enough to go to them. Now there are a whole lot of shows I can't go to because I can't get a seat, they start too late, or both. That's hard for me to accept. I have more trouble accepting giving up rock concerts than I do ending my music career. Not that I have the money to go to very many anyway.

So that stinks. But it helps to remember how many good days I've had until today. One bad day out of seven is a pretty good average, even if the bad day showed me I have to give up my favorite thing to do in the world. Maybe not completely, but mostly.

The only thing left to tell is what the doctor actually ordered for me. My oncologist consulted with a colleague at the local university hospital. This is where I would go for any clinical trials, should I be involved in one. He doesn't have a study that I'm a good candidate for at the moment, but we'll keep in touch with him about that. He also told my doctor that he's not enthusiastic about Provenge for me. I was not sure about Provenge either, so we'll pass on that for now.

Which leaves adding Xtandi to Lupron. It looks like we're going ahead with that, but I still have to go to a dentist to make sure it's OK for me to take it. I haven't started looking for a dentist yet. I'll do that tomorrow.

While I was writing this post, I was also carrying on a message conversation with one of my best friends, who was trying to hold me accountable. Trying to make sure I did the right thing. I think the blog post I wrote in that conversation was better than this one. A friend like that is just what the doctor ordered, right while I was writing a post titled Just What The Doctor Ordered.

I mentioned that my allergy attack today ended when I stepped into the air-conditioned offices of my therapist. That was where this day turned from bad to much better. An allergy attack finally letting up always makes my day better. Seeing my therapist always makes my day better. When I got home, I started writing this post. Writing always makes my day better. My wife made me a nice dinner. Day continuing to improve. But I still can't go to the concert. So it's a mixed day rather than a bad day.

If I have a choice, I'll take one bad or mixed day out of seven every time. Before and during this difficult day when I found out what my doctor has ordered, I had six days and a lot of love that really were just what the doctor ordered. #waroncancer