Wednesday, November 30, 2016

Done Running The Show

For my whole adult life, whatever I was involved in, I always wanted to run the show. But cancer changed all of that. Now I have no desire to be the one in charge, the one who's organizing everything and making sure it all comes together. I'm done running the show.

I've wanted to run the show for most of the things I've been part of, especially musically. Many of the bands I've been in have been formed to do my original songs. I've been a sideman too, and had a gig as a backup singer in a country band for three years, along with my years as a wedding band singer. I was never the band leader for those gigs, and was happy not to be. But I've never been in a collaborative original music band. Every original band I've been in, I was in charge. We did my songs, arrangements, and parodies.

I've enjoyed singing in every choir I've been in, but in each one, what I really wanted to do was direct. I have directed many choirs. Choir directing has been one of my great musical passions over the years. But the last thing I want to do now is try to put a choir together and put on a Christmas concert. Not happening. I'm too tired.

Ditto for every church music program I've been involved in. For most of my life, I was a volunteer. I wasn't in charge. But eventually, that became an itch that needed to be scratched as well. I finally got the chance to lead from 2011 to 2015. I got to decide what songs we did, how the service would go, what the PowerPoint would look like, who was in the band, and all the rest. Basically everything but the sermon. I got to do it in my own style, the way I thought it should be done. But now, when I go to church, that's the furthest thing from my mind.

That's been the case in the studio as well, but since I'm the producer, and it's my studio, that's to be expected. But I'm even losing my desire to do that. I have one more CD project to produce. One more show to run. Then I'm done. I'm looking forward to capping off that part of my career, but it makes me tired just thinking about it. I'm looking forward to moving on to what's next.

I've been talking in this blog for weeks about my final big performance. It may seem ironic that I'm saying all of this after having just shared the videos of that concert on Facebook for the past two days, but for me, the two go hand in hand. The video of the full concert, and videos of each individual song, are on YouTube now. For anyone who reads this blog, but isn't on Facebook, here is the full concert video. It's an hour and 24 minutes long, so watch it later, or please come back!

That was one of the most difficult shows I've ever attempted to run, and not just because of cancer treatment. If you watch the video, you see how many people were involved. There were a lot of schedules that had to be juggled. The set was so long, I had to break rehearsals up into halves that rehearsed at separate times. Four rehearsals for each half were originally planned. We ended up rehearsing the first half three times, and the second half only two and a half times. And I wasn't there for one of the two full rehearsals because I was sick. I cancelled another simply because I was having a bad day and just couldn't do it. It came off remarkably well considering all of that - and adding a case of bronchitis on top of it - but it made me realize that I'm done trying to herd that many cats. I'm done running the show.

I went into the planning of that show fully intending to do another big one next year. After this performance, I realize that's not in the cards. It's not that I've lost the love of performing. It's that I've lost my desire to do all of the work that goes into it. And it is a tremendous amount of work. Even a standard 25 minute set for this same event next year is too much if I'm in charge. If someone else has a song or two in their set that they want me to sing, and they'll make it easy for me, we can talk. But I'm no longer motivated to put together sets of my own anymore. That itch was scratched very well this year.

You see, I'm retiring from music. Except for my work with the kids, my weekly song parody service for my two remaining radio clients, and my one last CD project, which will be finished in early 2017, I'm ready to step out of the spotlight. I don't have the energy or the desire to stay in it anymore. I have other priorities now. God is leading me down a different path, and I'm fine with that. Better than fine, actually. I'm excited.

My fellow musicians and friends look at me like I have two heads when I say this is it. How can I just lay down my main passion in life with no regrets? Surely I'll change my mind. Sorry, but I don't think so. My mind has already been changed. So has my heart. I have new passions, and I'm anxious to pursue them.

I have a story to keep telling. I intend to start putting it into book form soon. My wife and I have a 40th anniversary celebration to plan. But my wife will run that show! And I have a dark chocolate ice cream empire to build. But first, I have to get the recipe right.

I no longer have any desire to be the one directing the music in church, but what I love to do now is speak. From proposing toasts and pronouncing blessings to officiating weddings, I love to share from my heart what God has placed there. I got a brief opportunity to do that in church last Sunday.

As you may know, last Sunday was the first Sunday of Advent. The first candle of the season, which symbolizes hope, is lit. My wife and I were asked to light the candle, read a verse of scripture, and say a few words. My wife took care of the candle lighting while I read a verse of scripture and shared for about five minutes on the subject of hope. I talked about what gives me hope, and where my hope is placed. Most of what I said was taken from this blog. I closed with another verse of scripture and a prayer. The "speech," if you want to call it that, was planned ahead of time, but the prayer was totally off the cuff. I don't like read or rehearsed prayers. I'd much rather just pray in the moment, and that's what I did.

I think that five minute talk in church last Sunday was as meaningful for me as the concert was a week prior. And it took a whole lot less preparation and stress. But that's not the point. It felt like the future. The concert felt like the past. This whole process feels like one outlet, one ministry is ending, and another is beginning. I don't think this one will last 28 years, but I'll take whatever I can get.

Part of what made last Sunday so meaningful for me was that I was just a small part of the service. I could still worship. I didn't have a job to do while others worshiped. I just got up and said my piece when the pastor called me up. I didn't have to run the show.

I don't have to put a choir together, schedule rehearsals, and herd a million cats to make sure my church has a great Christmas program this year. But our closest friend is giving me a great gift this Christmas. I'm singing in her Christmas choir, and she asked me to direct one of the songs. A big arrangement of O Holy Night that she sings the solo on, (she's the best singer I know) and a really fun song to direct. I don't have to run the show. I don't have to make sure everybody knows their part. I just get to step up when it's my turn and direct the biggest song in the program. I couldn't be more excited. What God takes away with his right hand, he gives back with his left.

If, after watching my concert video or having seen me perform or lead worship over the years, you're disappointed that I'm hanging it up, if you're finding it hard to understand why I'd stop doing something I obviously love so much, I can only say this. Hormone treatment is making me weaker all the time. But more than that, cancer has changed my priorities and passions. I'm not the guy I used to be.

Months ago, when I was having a hard time getting past some psychological blockage and getting back into a musical head space so I could get work done, I said that it felt like a page had turned, and I had to keep going back and rereading what I'd already read. I still feel that way now. But I'm closer to finally being able to turn that page for good and move on. I have a new path to walk, and I can't wait to get started. I still have much to do, not the least of which is rest and focus on treatment. So no more big musical performances for me. I'm done running the show. #waroncancer

Thursday, November 24, 2016

What I'm Thankful For

My heart is full today. I am so blessed that I can't let this day go by without telling you what I'm thankful for. It's a long list, which I know won't surprise anyone. I'll try to consolidate it as much as I can.

If you follow me on Facebook, you've seen shares of posts from last year at this time where I count my blessings, and talk about being thankful, not just in the bad times, but for them. Since I wrote those posts a year ago, much has happened. Most of it has been well documented in this blog. And over the past year, my gratitude has only increased.

To start with, I'm thankful for the opportunity I got to perform this past Sunday. I wrote about it on Facebook, but in case you didn't see it, it was a wonderful night. It went very well, especially considering how little rehearsal we had on much of the program. I felt very loved, supported, and validated. Friends came from near and far, and I got to perform some songs that I've wanted to perform for a very long time. I'm thankful for the friends who put in many hours of practice and rehearsal time to put this concert on with me. You all rock!

There was a three camera shoot of the concert, and the video will be up on YouTube very soon. I'm thankful to have such a cool document of that event. I'll cherish that video for the rest of my life.

I "went there" with the audience at the show. I explained to them why I felt the need to do an extra long set of "bucket list" songs. I told them about my disease and my prognosis. Things don't often get that quiet in a bar, but you could have heard a pin drop. I'm happy to report that I did not cry. But a few other people did.

I also got to perform with my friend Todd and some of the kids I help to coach Sunday night. I'm very thankful for the opportunity to work with them. It means a great deal to me.

I'm thankful that I don't feel any pain from my cancer yet. I still feel relatively normal, and that enables me to do the things I love to do. I am weak, and have little endurance, but I'm not incapacitated like many of my brothers are. That day is probably coming, but it isn't here yet, and for that, I am thankful.

I'm thankful for Xtandi, which is keeping my PSA number down, and by so doing, keeping my cancer under control, at least for now. And in case we need to be reminded, now is all we have. None of us are promised tomorrow, or even five minutes from now. I think gratitude and peace happen when we live in the now, rather than worry about tomorrow, or live with regrets about yesterday.

I'm thankful that my treatment is 100% covered. Without that, my prognosis would be much shorter.

I'm thankful to live in the state of Colorado, where the alternative treatment I've just begun is so readily available. My next post will be all about that. It will be titled, "Tiny Popsicles."

I'm thankful for my therapist. She has made a huge difference in my life. I'm in a much better place now than when we began our work several months ago. If you can afford counseling, or have coverage for it, I highly recommend it, especially for my brothers with prostate cancer and their loved ones. There is something about having someone to talk to who doesn't know anyone that you know. It frees you to say exactly what's on your mind, and get to the bottom of why you feel the way you do. I'm still getting there, but I've come a long away in just a short time. My therapist gets the credit for that.

I'm thankful for the supplement 5-HTP, and for the dear friend who turned me on to it. I, in turn, have told others about it, in the support groups I'm part of, in particular. It's helped many of them too. I don't feel like I need it as much anymore, as my body seems to have acclimated to the effects of Lupron after more than a year of injections, and because of the therapy I talked about. But I still take it from time to time when I'm upset, or feel like I'm about to get upset. It's a godsend.

I'm thankful for the friendships I've made in those support groups. Some have become very close. I'm not going to name names, because I don't want to leave anyone out. You know who you are. It's hard for me to imagine my life without you. Our friendship has been an unexpected blessing. It's hard for me to believe we didn't even know each other a year ago. You have made a real difference in my life.

The same goes for new friendships made and deepened in person this past year. Again, you all know who you are. It blows my mind to think that, in some cases, we weren't even friends last Thanksgiving. I don't know how the past year would have gone without you in my life. I'm so grateful that we are friends now.

I can't leave out my longstanding friendships. Most have gotten closer in the past year. Some have been revitalized. Some that were dormant have been restored. All are precious to me. I'm thankful to and for each and every one of you.

Two couples in particular have been a huge lifeline for us, financially. Without you, we wouldn't make it. We are thankful for your friendship and your continued acts of love for us. Thank you. We love you.

My wife and I are also especially thankful for our closest friend, who just moved back here from California. Of all the blessings of the past year, that one ranks right at the top. Our friendship with you is a blessing beyond calculation. And once again, it was completely unexpected a year ago. How can we say thanks enough for a blessing like this? We can't. But we are so grateful you are here. Your mere presence here has turned a light on in our lives. We thank God for you.

I'm thankful for my supportive, Godly family, who have been there for me throughout this ordeal. If not for the upbringing I had, and the prayers and encouragement I get from my family, I'd be in a much worse place than I am now. I'd have a much worse disposition about it, of that I'm sure. The faith that was instilled in me from a young age sustains me now. I don't know how people without a supportive family get through something like this.

I'm thankful for my beautiful, amazing wife. If you know her, you know why. I've said many times over the years that if, God forbid, I ever lost her and had to get married again, it would have to be to someone who never knew her. Any woman who knows her would think, "There's no way I can measure up to that." And she would be right. If you're one of the two or three people on earth who haven't read the blog post I wrote about her, read Counting My Blessings #2: Sharon. Once you read that, you'll know why I'm so thankful for her.

But the relationship that I'm most thankful for is the one I've experienced with God. The theme of this blog from the beginning has been how God has used cancer to wake me up to what's really important; the people in my life, and my relationship with my Creator. God is more real to me now than he's ever been before. My heart has been changed. My attitude has been changed. Everyone who knew me before has seen it. That's a God thing.

We've all heard the expression that God is love. I can testify that it's true. God's very nature is pure love without conditions. From early on after I was diagnosed, God began revealing himself to me. The closer you get to God, the more you realize that God doesn't just feel love for us, or perform acts of love. No, love is what God is. I now see that the love I've received from friends and family is a reflection of his love. All love comes from him. I am eternally grateful for his love, and yours. It's all the same thing, whether you acknowledge it or not. Whether you acknowledge him or not. I'm thankful for love, and for the God from whom all love flows.

Since I went there with the audience Sunday night, I have to go there with you too. None of the above blessings would have happened without cancer. The new friendships, both online and in person, would not exist if it weren't for my cancer. Even my relationships with old friends and family would not be what they are now if it weren't for the fact that I have cancer. Certainly my relationship with God would not be what it is without that.

If not for cancer, I would not have had the opportunity to perform last Sunday to the extent that I did, and whatever I did would not have had as much meaning. I wouldn't be working with those kids, either. And I wouldn't even know what I was missing.

If not for cancer, I wouldn't be writing this blog. I wouldn't have this platform or this ministry. I am thankful for this blog, and for all of you who read it, and support it with likes, shares, and comments. Writing this blog has replaced music as my main passion. I never thought that would be possible, but there it is. I don't regret for one second that last Sunday night's performance was the last big one that I'll put together myself. I love music, but God is leading me in a different direction now.

So yes, as counter-intuitive as it seems, as wrong as it may sound, I am thankful for my cancer. It has brought untold blessings to me. Yes, there is suffering too, and there will be more. Much more. For me, and for those who love me. But for me, the good has far outweighed the bad. This much love is worth any price.

As a pastor I once had used to say, I'm not done, but I guess I'll quit. I could go on forever, and I almost did, as I'm fond of saying. I know you're not thankful for my cancer, but I am. And I'm thankful for you. For everyone who takes the time to read what I write. Thank you.

So that's what I'm thankful for. As you gather with family and friends today, and consider what you're thankful for, I hope you'll remember that the people in your life are more precious than anything else. And I hope you'll remember that God not only loves you, he is love. Let him reveal himself to you the way he has to me. #waroncancer

Give thanks to the Lord, for he is good; his love endures forever. (Psalm 118:1)

Wednesday, November 16, 2016

Steroids Are My Friend

Today is the first day I've felt pretty much normal since I came down with that cold, or bronchitis, or whatever crud it was. This was a tough one to put down. My usual regimen of echinacea, Vitamin C, and sleeping with a vaporizer wasn't going to do the trick in time for my last big public performance this Sunday. It was time to call in the big guns.

I remember how a good friend of mine used to come down with something every year, right before a big production. So he would go to his doctor and get a steroid shot. Fixed him right up so he could get through the hours he'd have to put in. So I called my primary care doctor, and he couldn't see me until sometime next week. That wasn't going to work for me. I wasn't sure what to do, so I called my oncologist's office to ask if they could help me. They not only said they didn't have what I was looking for, but that I should stay away from their offices while I'm sick. Oh yeah, there are chemo patients there, dummy. Can't go there.

The nurse there told me to go to an Urgent Care facility. It was my first time going to one. There's one very close to our house, so it was convenient. The consensus was that I had some kind of bronchitis, though they didn't take a throat culture to make sure. The doctor just wrote me a prescription for a steroid (methylprednisolone) and an antibiotic. I've finished taking the antibiotics, and I have two more steroid pills to take. Beware my 'roid rage. But I feel pretty much at full strength now. I still have a bit of phlegm going on, but my singing voice is back. And not a moment too soon. I have one of the two remaining rehearsals for Sunday's performance today.

Years ago, my wife had to take Prednisone for something, and gained five pounds in three days. So she stopped taking it immediately! When I started taking mine, she guaranteed that I'd gain weight from it, but I haven't. Not one pound over five days. Don't hate me because I'm beautiful.

I'd feel good about that, except for the probable reason why. It's not just because I'm naturally thin. It's also because cancer is driving my weight back down. It's eating me up one cell at a time, as my nutritionist confirmed a while back. Gaining weight has always been difficult for me, and losing weight very easy. It's been a great advantage for me my whole life until now. It wouldn't be too hard for Gaunt Cancer Guy to make a reappearance. But I won't keep taking steroids to avoid it.

With the coverage I have now, my trip to Urgent care cost me a two dollar copay. Another two dollar copay for the prescriptions. That's it. Under the old system, that would not have been possible for me. That trip to Urgent Care would have been two hundred dollars. I have no idea what the prescriptions would have cost. A few years ago, I probably would have had to call this show off.

When I said in my last post that all I was concerned about was being able to get coverage for my pre-existing condition, that wasn't entirely true. I'm also concerned that I will have to buy insurance from a company that can charge me whatever they want because I'm in their highest risk category. The 100% risk category, as a matter of fact. To me, that would be the same thing as not being able to get insurance at all. Right now, I get a lot of help from the government. I doubt that same amount of help, if any, will be forthcoming next year. I really hope I'm proven wrong.

But in the meantime, I still have coverage now. I got my steroid pills in time to get me right for this performance. I'll still have coverage when it's time for my next Lupron shot in January. Hopefully everything will stay in place for a little while longer. Who knows? By the time things change, it may be a moot point for me. I hope not, but given how my cancer has behaved so far, it could happen.

But I'm not gonna think about that right now. Right now, I'm looking forward to this gig, followed by the holidays. I have a lot to be thankful for, and I want to tell you about it. It's a good day. It's the first day I've woken up in a good mood in a week. It's the first day I've not felt sick in twelve days. I finally feel like myself again. Steroids are my friend. #waroncancer

Thursday, November 10, 2016

Personal Consequences

They say that elections have consequences. That's especially true of this one for me personally. I've tried hard to leave politics out of this blog. For one thing, I don't want to lose half of my readers over a political statement. And that's not what this blog is for anyway. So I'll refrain from sharing my views on this election, except in respect to how it could very well affect me and my cancer treatment. I hope not, but if those in leadership starting in January keep their promises, I could be in some serious trouble.

But before I get into that, I should tell you that my cold is getting better. It's settled into a phlegmy cough that's mainly bad at night. My voice isn't back yet, but I expect to be back to full strength, or close to it, by next week. I had an IV treatment of Vitamin C and Zinc on Tuesday, and expected to feel much better yesterday, but I don't think it made any difference. I laid awake coughing for half the night on Tuesday, so yesterday was rough. But I slept much better last night, and feel like I'm on the mend today. My big performance a week from Sunday is still on. Holy smokes, it's a week from Sunday!

I always avoid talking about politics online. I especially hate political posts on Facebook. Followed closely by games and pictures of food! I've always been very interested in politics, but this election has cured me of that. When my wife was looking forward to her retirement, she expressed concern that I'd be watching political coverage all the time while she was at home. She doesn't like the amount of time I've spent on it. I had three daily political talk shows I recorded and watched every day. There was another weekly one I watched almost every week. So I made her a promise. I told her that, after this election, I'd give up politics for good. And I have.

I stopped recording all of those shows, and I relied upon local news Wednesday morning to tell me the outcome. I couldn't even stay up to see the final call. Another thing cancer has taken from me. I've avoided political news since the election, and I have to say, it feels pretty good. I don't miss it.

But the results of this election will have a profound, concrete effect on me and all of my loved ones. I don't mean to be melodramatic when I say what I'm about to say. I'm just stating the facts as I know them, and taking the candidates and elected officials at their word about what they will do. Not for the first or last time, I feel the need to say to my international readers (and how thankful I am that you are here!) that the concept of having to buy insurance coverage for health care will be a foreign concept for you. Literally! But that's the way it is here in the United States for many, if not most of us.

In my last post, I mentioned the fact that, for most of my adult life, as a self-employed musician, I've had no health insurance. That was also true before I became self-employed, because I worked for companies that were too small to provide it. It wasn't until the Affordable Care Act - otherwise known as Obamacare - was implemented in 2014, that I was able to get coverage that we could afford. The next year, I was diagnosed with aggressive, inoperable prostate cancer. But because of the new law, I could not be dropped because of my illness.

Under the ACA, preventative care is free, including yearly checkups. That's how I found out I have cancer, in a regular checkup with blood work, which cost me nothing. That's when they discovered that 15.8 PSA number.

My coverage has changed three times in the last three years, and it's been a bit of a roller coaster - well documented in this blog - but I've had coverage. Under the old system, I would have discovered my high PSA at a local health fair. After paying out of pocket for a biopsy, an MRI and a bone scan, I would have been diagnosed. But I would not have been able to get insurance after being diagnosed with a serious pre-existing condition. A terminal illness.

You all know where I'm going with this. This congress has tried more than 50 times to repeal Obamacare. This coming January, they will have a President who will sign a repeal. They say they will do it within the first 100 days. At that point, I expect to lose the coverage I have.

I know they say there will be a replacement for it, but I doubt that whatever replacement there is will be ready in the first 100 days, or that it will cover people like me the way Obamacare has. It will be a more "free market" approach, which will mean I'll be thrown back onto the individual market. Will there be protections for people with pre-existing conditions? I don't see how that works unless they mandate that everyone buys insurance, the way Obamacare does. You can't force insurance companies to cover sick people unless you give them a lot more new customers at the same time. That was the deal that Obamacare made with the insurance carriers; You have to insure everybody, but all the healthy people will have to buy insurance too.

My treatment costs are high, though not as high as many. My four-month Lupron shot, which is due again in January, costs $1,900. But as you know if you've been reading this blog, Lupron has stopped controlling my cancer. So we needed an add-on to it; Xtandi, which costs $9,000 per month. If I lose coverage early next year, and have to wait for the government to come up with some replacement, nobody is going to pick up that tab in the meantime. We have friends with means who are helping us a lot, but I think that's beyond their reach.

I have many other concerns about the outcome of this election, as many do. But this one is in sharp focus. It's deeply personal, and it's literally a matter of life and death. The alarming rate at which my cancer was advancing has been, for the moment, arrested by Xtandi. If I have to go off of it for even a few months because the cost is too high, all those gains will be lost in a hurry. If I lose coverage permanently, well, you do the math.

I know Obamacare has its problems. I know it's been a hardship for some. I know people that it's been a hardship for. And I really don't want the comments on this post to be a debate on the merits and drawbacks of the ACA. I'm just telling you my story. Once I had no insurance, now I have it. And I'm afraid that I'll lose it soon, and that my life span will be severely shortened because of it, because no company will cover me with aggressive Stage 4 cancer. That's all.

That's as close to a political statement as you'll ever see from me. I'd like to end this post on a more positive note. Earlier, I talked about how I dislike politics on Facebook. A couple of weeks ago, I composed a post that I intended to put on my Facebook timeline, but never did. I think the sentiment of that post would make a good conclusion to this one. Here's part of what I wrote, but never posted:

I never react to or comment on a political post on Facebook, whether I agree or disagree. I'm as political as anyone. Probably more than most. But friendships are ending over this election. I refuse to let that happen. I don't want to lose anyone I love to this crap show. It comes down to this: I love my friends more than I love my belief systems. If we could all get to that point, this world would be a much better place, I think.

Let's love each other more than we love our belief systems, whether they be political, religious, or any other construct. Elections come and go, but people are forever. As Forrest Gump would say, that's all I have to say about that.

Now that I'm done with politics, these words ring true to me all the more. Let's love each other more than we love our belief systems. I am at peace about my mortality. It's up to God to decide if I get more time or less. Who knows, maybe Xtandi was only gonna work for me for a few more months anyway. But I'd like to keep taking it for as long as it works, not just for as long as I can afford to take it.

However this works out, I hope that, in their rush to dismantle the signature achievement of this President that they despise so much, they remember to protect people like me. #waroncancer

Monday, November 7, 2016

Cancer With A Cold

This is the first time I've been sick since I've been sick. I mean, it's the first time I've had a cold or some kind of bug since I was diagnosed with cancer. It's not fun, and it's made worse by the rehearsal schedule I've committed to. In fact, I have to make this post short, or my wife will start telling me to get back in bed.

I've always been able to get over colds quickly, within two or three days. I attribute this to the fact that, for most of my adult life, as a self employed musician, I didn't have health insurance. So I didn't go running to the doctor every time I had a sniffle, and therefore, have not been taking antibiotics my whole life. I really believe that antibiotics, while sometimes necessary, if taken repeatedly over a course of many years, beat down our body's ability to heal itself.

When I would come down with a cold, I've had a regimen for many years that's worked for me. In the 1980's, when I was going to a walk-in clinic when I needed to see a doctor, a physician I saw there advised me to overload on Vitamin C to ward off a cold. He told me to take 1,000 milligrams four times a day. That worked pretty well for me for a period of years, but then I learned about echinacea in the 1990's. Since then, when I feel a cold coming on, or I'm trying to recover from one, I take my 1,000 milligram capsule of Vitamin C (Natural C, never synthetic, with rose hips - who knew roses had hips?) with an eyedropper full of echinacea drops in a glass of water four times a day: Breakfast, lunch, dinner, and before I go to bed. A few days of doing that, plus sleeping with a vaporizer in a closed room when needed, would knock a cold out of me in just a few days, or keep one from gaining a foothold, while my friends who had been taking antibiotics for their whole lives had their coughs and colds hang on for weeks.

But that was before I got cancer. I've wondered since I was diagnosed what would happen if I caught a cold or flu. God forbid I get the flu. That's why I got a flu shot. Will Lupron and Xtandi, by making my body weaker, make the recovery time from a cold longer? Could I get an infection that sends me to the hospital? Is my immune system compromised from hormone treatment?

In my last post, I talked about an upcoming rehearsal, and how important the performance it was for is to me. That rehearsal was last Saturday. If we are Facebook friends, you may have seen a video from it that I posted yesterday morning. I could feel this crud coming on beforehand, but I powered through the rehearsal as best I could. My voice wasn't full strength, but it was good enough to get through this important rehearsal. This one wasn't quite as long as the last, but it still went for five hours. I ended up having to shut it down during a third run-through of the closing medley. After the fifth or sixth run to the Kleenex box in a few minutes, I said, "I gotta call it. The crud's taking over." And since then, it has.

Even when relatively healthy, I'd expect to need a recovery day or two after a rehearsal like that. What I didn't take into account is that the effort to fight off this cold would would fail spectacularly because of having run myself down the way I did. I couldn't go to church yesterday, and I had to cancel a vocal rehearsal tonight because I'm still too sick. I don't want to infect my friends. I'm afraid I may have already done that on Saturday, though I certainly hope not.

I'm better today than I was yesterday. I'm hoping that two days of rest and keeping to my regimen - along with another herbal remedy recommended by a friend - will get me back to full strength in time for the next rehearsal on Wednesday. I also have an appointment set for an IV treatment of Vitamin C and Zinc tomorrow morning. If all these measures don't get me well enough to rehearse two days from now, this final big performance of my career is in jeopardy, as I said in an earlier post.

Last Friday night at dinner, a dear friend told me to take it easy on Saturday. She asked what would happen if I had to cut this performance down or cancel it. I tried to communicate to her how important this is to me, and how I'm willing to pay whatever price is necessary to see it through. If you watch the video of that rehearsal, you can see how much this energizes me. So taking it easy is not an option.

I have a mantra with the kids I'm helping to coach: Practice like you play. Practice with the same intensity and enthusiasm as though you're in front of an audience. Practice like you play, or else you'll end up playing like you practice. That's what I've always done. It's the only way I know how. Like a puppy, I have two speeds: Stop and Go. In a rehearsal for something this precious to me, there is no Take It Easy. There's only Full Speed Ahead.

I'm almost afraid of the advice I'll get from all of you. Slow down. Take care of yourself. Try this cold remedy. I really appreciate that you care, but this is something I have to do. I just wish I didn't have to try to do it with a cold. Or with cancer.

But if not for cancer, I wouldn't be doing this much. That's the irony. It's the Sense Of Urgency that I have now that pushes me. I don't know if I'll be able to do something this big next year. I'll only be weaker, and maybe in pain. As I told my friend on Friday when she asked what would happen if I couldn't go through with this performance, I told her I'd regret it for the rest of my life, however long that is. If I lose a little time on the back end because I pushed myself so hard now, so be it. At least I will have done what I love, and what I was born to do, one last time.

It stinks having a cold, even without cancer. With cancer, it's worse. But hopefully, not that much worse for me. I don't think I'm likely to get an infection that sends me to the hospital, because I haven't had chemo to compromise my immune system. Yet another reason not to do chemo.

I need your prayers now more than ever. I need to kick this thing fast so I can be ready for the next rehearsal, and my last big public performance. Thank you for your continued support and prayers. They are needed, and they are felt. #waroncancer

Wednesday, November 2, 2016

Two Steps Forward, One Step Back

It's been more than a week since I last posted, which is unusual for me, especially lately. But I haven't had that much to tell. Suffice it to say that the past week has been more good than bad. I've had one bad day out of seven, which is pretty much normal for me these days. That's a pretty good average. I shouldn't complain. But as Joe Walsh once said, I can't complain, but sometimes I still do.

I've learned not to write just to make myself feel better, or because a few days have gone by, and I feel like I should keep the ball rolling. Someone told me a while back that the first rule of creative writing is Have Something To Say. Wise words. It's funny, but during my last visit to my oncologist, where he told me the good news about my PSA numbers, he said he didn't need to see me for a few months. He said I should just "live my life." But the past few months have been so rich with news, there's been a lot to say. I told him that I don't mind coming in more often. I almost said I need to keep coming in so I have stuff to write about!

But since I told you what the rest of last week held in store in my last post, I think I should tell you how it went, and what it portends for the future.

Previously, on Mark's Melodrama, I had a rehearsal for my upcoming performance scheduled for Thursday, then a Halloween party with friends on Friday night, which I knew would go late into the night, followed by a rehearsal Saturday morning with the kids I've been helping to coach, dinner here with friends Saturday night, and a gig with the kids on Sunday afternoon. I knew this would test my endurance, and for the most part, I passed the test. Except the whole process started on the wrong foot.

As it turned out, Thursday was my one really bad day last week. For whatever reason, I hardly slept Wednesday night. I've never been good after a bad night's sleep, and the longer I go on hormone treatment, the worse it is for me when I don't sleep well. Lupron makes me weaker every day. I used to be able to power through the day after a bad night's sleep, but that's much more difficult now.

One thing that's kept me from sleeping recently is frequent leg spasms. The muscles in one leg or the other tense up every few seconds. It only happens when I'm lying down, never while standing or sitting, and these spasms make it impossible for me to sleep. I've had this problem infrequently for much of my adult life, but it hasn't happened often enough to seek medical help for it. I just get up for an hour or so, and when I go back to bed, the problem goes away. Except for Wednesday night.

As I laid awake Wednesday night, at about 2:00 AM, I decided to get up for a while in an effort to get my leg spasms to stop. While I was up, I got on my computer and looked at Facebook. When I did, I saw some really bad news from a dear friend and cancer brother. I've become good friends with him and his wife in a support group we both frequent, and I've become very attached to them. So his news hit me very hard. The rest of my night didn't improve after that, and Thursday went sideways for me from that point on.

After about 90 minutes on the computer, I went back to bed. No luck getting back to sleep. My leg kept tensing up every few seconds. I got up Thursday morning having only slept two or three hours at the most. All day I fretted about my friends. I prayed for them, which I do constantly anyway. But last Thursday, my prayers were weak and filled with doubt. I couldn't focus on anything. And I had a rehearsal that night to prepare for.

This upcoming performance has so much material that I've felt the need to break rehearsals up into two sections; The main "bucket list" set, and a mammoth 26 minute medley for the finale. Last Thursday night was supposed to be the first rehearsal for the finale. So I tried to take a nap in the afternoon to make up for lost sleep. I've always been able to nap well, but not that day. When I tried, I had more leg spasms. This time, it was the other leg. Go figure. So I got up after about 90 minutes of trying to nap with no success, just as bad off as I was before, if not worse.

In the end, I had to call off the rehearsal. Only four of them had been scheduled for this gig, and there was no way to make that one up. So now, we're down to three rehearsals for this 26 minute epic.

It's not so much losing that one rehearsal that bothers me. It's wondering if it will happen again. If it does, this whole performance is in jeopardy. All along, I've been looking at this performance as my finale. My swan song. That's why I asked for more time at this annual music festival where sets are normally restricted to 25 minutes because so many people want to play at this event. But because of the fact that my wife and I have been such integral members of this group for a decade now, and because of my condition, allowances have been made for me this year. I'm very grateful for that, and it will kill me if I end up not being able to go through with it because I've had to cancel too many rehearsals when I'm having a bad day.

That experience, coupled with the recovery time I needed from the first rehearsal a week ago last Saturday, makes me realize that this really will be my last big public performance. It will take everything I've got and more to put this one on. Assuming I'm able to make it happen at all. By this time next year, even if I'm not experiencing bone pain, I sincerely doubt that I'll have the energy to put together another big set of my own. If somebody wants me to sing a song or two in their set, maybe we can talk. But I had plans for another huge production for next year as well, and as long as I'm still on hormone treatment, I don't see that happening now. I just don't have the energy for it anymore. Next year will only be worse.

That was my one step back. The good news is, the rest of my weekend was all good. I got a good night's sleep with minimal leg spasms Thursday night. I felt rested on Friday, and for the rest of the weekend. The Halloween party Friday night was great, mainly because it was spent with people that I love very much. We stayed until 11:00 PM, which is very late for us, especially these days. My rehearsal with the kids was at 10:00 AM the next morning, but I was fine. The rehearsal was fun. They always are. I never would have believed how much fulfillment I could get from mentoring young talent, but I do. I love every minute of it.

That night, we hosted friends for a Halloween-themed dinner at our house. It was with the same family in whose home the rehearsals with the kids are held. They are some of a few friends that we've become close to "post-cancer." In one way, our friendship just sort of happened. But in another way, I realize that I've dragged them into my drama, and they came willingly, regardless of how hard my road is on them. Our friendship has been The Gift In The Wound for all of us.

Sunday afternoon, the kids had their gig at a local bar. It was a "Battle Of The Bands" type thing. I got to be onstage with them for a couple of songs. I sang a harmony part on one song, and played organ and sang harmony on another. I'd had a good night's sleep the night before, but even so, you might think I'd run out of gas, considering my schedule the previous few days. But I was energized. I always am in a performance setting. A rehearsal might prove too much for me, but if I feel fairly rested going into a performance, adrenaline will always carry me through it. Sunday was no exception.

As usual, the wrong band won the competition. That often happens in these things. It's actually the norm. Anybody who's ever participated in one can attest to that. But it didn't matter. That wasn't the point. The point was to get these kids some experience in the real world, and that goal was achieved.

I probably shouldn't single anyone out, but I feel moved to say that one of the most exhilarating aspects of this for me is working with a very exciting young singer. This girl can bring the house down at age 17. She did just that on Sunday. I told her afterwards that it's an honor and a privilege for me to be onstage with her, and I meant every word. Over the next year or two, I hope to try to help her become the dominant stage performer I know she can be.

I came home from that show exhausted, but elated. When I look back on that string of four days, it started off very badly, with a major step back for me. But each day thereafter was a good step forward.

One bad day out of seven is a pretty good average. It just stinks that one of those bad days came at the start of a long weekend when I had an important rehearsal scheduled. I hope I can keep to that ratio, at least until my performance on November 20th is over. I really need you to pray that, when a bad day comes, it won't force me to cancel any more rehearsals. It's my own fault that I'm trying to do more than I probably should, but I have to look at it as my last chance to do something big. I need for this to happen, and for it to come off well.

Two steps forward, one step back. Actually, three steps forward, if you take each day of the past weekend into account. At least I'm making some progress. And I'm doing what I love, one last time. #waroncancer

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