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


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