Saturday, December 31, 2016

2016


I hear many people talking about what a bad year 2016 was. Their measuring stick seems to be the sheer number of celebrity deaths, or the worst presidential election ever, or both. If I were in a different place in life, I might agree. But I tend to personalize years much more now than I used to, now that my remaining years can probably be counted on the fingers of one hand. There's been a lot of bad this year for my wife and me, to be sure, but also a lot of good. And I wouldn't change the bad if it meant losing the good.

2016 was my first full calendar year with cancer. The changes that have taken place this year have not been as stark as they were in 2015, a year that began with my being a worship leader in a church and having lots of studio work and ended with my being diagnosed with aggressive, inoperable prostate cancer, and well on my way to retirement. I had begun this journal in October of 2015, and wrote a retrospective post about that year that you can read here.

But it's been a very eventful year nonetheless. In this post, I want to look back, take stock, and count my blessings. I'll try to just hit the highlights, but you know me. I may have a few things to say.

In my first post of 2016, I said this: Remember my post on thankfulness? If we thank God for the mountains, we also have to thank him for the valleys. Without the valleys, the mountains don't exist. Without mountains and valleys, all you have is Kansas. How true that has been this year. This year has been a series of mountains and valleys.

In January of 2016, I was battling weight loss. I've always been naturally thin, and had a high metabolism. It's great when you're in good health, but not so great when you have metastatic cancer. Much of this journal (which I had not yet turned into a blog - I was still only posting to a smallish group of friends and family on CaringBridge) was dedicated to my effort to keep my weight up.

At the beginning of this year, I was posting almost every day. About every little thing. I don't do that anymore. You're welcome. If you're one of the blessed souls who have read through this entire blog, you know that's true. Now I wait until I really have something to say.

On January 27th of 2016, I had my first appointment with my oncologist. I liked him immediately, which was a welcome change to how I felt about the urologist I had previously. My oncologist is a no-nonsense, just-give-me-the-facts kind of guy. I appreciate that. That's what I want in a doctor. He also respects my treatment choices, which not all doctors do.

At that visit, he clarified my diagnosis for me, and gave me my options, from his perspective. He works "for the man" (his term) and doesn't make any more or less money based on the treatments I choose. I like that. It helps me to trust him.

At the time, there was controversy about a suspicious spot that looked like metastasis on my left upper arm bone. He recommended an MRI of that specific area. He used an image from that MRI to consult with several experts about it. I've posted this image before, but in case you haven't seen it, here it is again.


It looked scary, but it turned out to be nothing. But because of my high Gleason score, we suspected that I had microscopic metastasis, and we turned out to be right. More on that later. But at the time, the news that this spot was not cancer was very good news indeed.

When it was decided that the spot in the MRI wasn't cancer, I started getting pressure to have radiation treatment to my prostate area done. I was told it could be confined to the prostate only, and it could be a cure. But I hesitated. I met with a radiation oncologist who tried to persuade me with very low risk percentages, but I wasn't convinced. I thought I would either have unbearable permanent side effects and reduced quality of life, or I would end up being metastatic a little while later anyway, so why go through it?

Nobody was happy with my hesitation. Not my doctor, my wife, or my friends. But I just couldn't go through with it. It turned out I made the right call, but nobody knew it at the time. Certainly not me.

The events I've been talking about happened in January and February of 2016. A few other significant things happened in February. Sometime in mid-February, I reconnected with my dear friend Nicki, who I had lost touch with after the death of her dad five years earlier. I've known Nicki since she was two years old. After her dad, who was one of my closest friends, passed away, I made Nicki a promise that I would do my best to be a surrogate dad to her, as much as I could. But I didn't keep my promise. It was only when I knew I had cancer that it became urgent to me to reach out to her. Now Nicki and I have reconnected in a powerful way. I now call her the daughter I never had. This year wasn't just about cancer. It was about relationships, more than anything.

Top: Nicki and me when we were both much younger. Bottom: From her visit here last summer.

On February 20th, I received my first cross pendant as a gift from my friend Paul. This cross pendant was made by his cousin Tom, who makes them to give away, as a ministry to cancer patients. This image of it has been displayed in many of my posts.


Recently, my wife started making them, and now I'm able to bless people with them when I feel led to do so. It's such a blessing to send these out to my brothers. And it's cool having one in every color!


So other than finding out I wasn't Stage 4 (as far as they knew at the time, anyway) receiving a gift that would turn into a ministry for my wife and me, wrestling with whether to undergo radiation treatment, and reconnecting with my surrogate daughter, I didn't have much going on in February. Except for a reunion concert with a band I used to be in, and my second Lupron shot, which was actually on March 1st.

My first six months on Lupron had not been fun at all. Oh sure, I got all squishy with emotion and practically walked around glowing, like I was pregnant or something, but behind closed doors, it was a rocky road. And Lupron provided the rocks. My first shot itself was horrific. It was very painful and made me stiff for days. I suddenly got very sensitive to cold, and felt numb. And that was just the beginning. Hot flashes, mood swings, loss of libido, all the joys of menopause forced on a man. If this is how hormonal women feel, it explains a lot.

So I really didn't want that next shot. But the first shot had been at my old urologist's office, and apparently, the tech there who gave me the shot wasn't very good at it. I expressed my fears at my oncologist's office when my next shot was coming up at the end of February, and they assured me that I'd get their best shot giver. Her name is Melanie, and she's given me my last two shots. I'll make sure to schedule my next shot on a day that she's in the office. I could hardly feel the two Lupron shots she's given me. Ask for Melanie by name.

It also seemed that my body had adjusted to Lupron when I got my next shot. Its effects have gotten milder for me. The way it lays emotions bare continued to be a problem, however. The emotional roller coaster continued at our house.

March was the low point of my battle with weight loss last year. My normal weight is 130 pounds, but as I'd gotten older it had gotten up around 136 to 138. After I was diagnosed and started treatment, my weight crashed. At its low point, my weight was down to 120 pounds for a few days in a row.


So I decided to see a nutritionist. She helped me learn how to eat to gain weight. It took a while, but my weight has been stable in the 128 to 132 pound range for the past few months. Holiday treats are pushing it a little higher right now, but that will end soon.

But the most significant thing that happened in March of 2016 is that's when I took the step of converting my CaringBridge journal into this blog. That's why, if you look at the list of posts in the sidebar, there are so many in February. I didn't really write all of those posts in February. February is when I copied and pasted them into this blog. The first post that I wrote here and shared on Facebook was The Ministry Of Silly Walks, on March 1st, the day of my second Lupron shot. I don't know why the date on the post says March 2nd. It was definitely the day of the shot. I remember that.

Sharing this blog on a wider platform, and in prostate cancer support groups has made an immense difference in my life. On CaringBridge, it was just about keeping friends and family in the loop. With this blog, here and on the Waroncancer.com platform, it's much more about being an encouragement to my brothers and their loved ones. Since I began sharing this blog on Facebook, I've made some wonderful friends. I've connected with people that I never would have otherwise. And the readership keeps growing. I'm humbled and grateful for all of it.

When 2016 began, my wife and I were without a home church. We are both lifetime churchgoers, so we were a bit disoriented during this time. We had always had a home church. But when the church where I led worship closed in May of 2015, we drifted for quite a while. It wasn't until late March and April of 2016 that we felt God had brought us to the right church, one that met our needs at this time in our lives. We're still part of that church today, and love it there. It's called The Table Community Church. If you live in the Denver area and are looking for a church, come join us.

There's an old saying. Church people go to church. We are church people, and for us, it's much better to end the year with a church than without one.

In April, my disability claim, which I had been pursuing for months, was denied. My wife and I were crushed, and I was advised by everyone to appeal the ruling. But I felt the Holy Spirit clearly indicate to me that I should not appeal, but just trust God. We did that, and some amazing friends stepped up and began supporting us financially, and we've never looked back.

That turn of events was a major emotional wave for both of us, and I saw no end to the ups and downs I seemed to be locked into by Lupron. But also in April, one crucial component to my emotional recovery began; Therapy. I highly recommend it, especially if it's covered. It's made a huge difference for me. Therapy helped me get back into a mindset where I could get work done. It helped tremendously with some anger issues I was having. We're well past my original reasons for going now, but I don't think I'll ever stop if I can help it. I can look not too far down the road, and I can see what's coming. I know I'm going to need counseling for the rest of my life. A huge thanks to my friend Sandi for helping me find the right therapist.

Another component in my gaining some emotional equilibrium back also happened in April. I began taking the supplement 5-HTP, on the advice of my close friend Deanna. 5-HTP worked wonders with my hormonal mood swings. It helped me let go of what was bothering me, and there was a lot bothering me then. After months of counseling, and my body growing acclimated to the effects of Lupron, I no longer feel like I need to take 5-HTP every day like I used to. I only take it now when I feel upset, or I feel like I may get upset about something. But for a few months, it was a Godsend. My wife said it gave her husband back to her.

In May, we lost our health coverage and had to find a new provider. But that situation only lasted for a few months, and our old coverage was reinstated as of August 1st. That was a real answer to prayer.

We had two pet losses during April and May. My wife's cat Midi died on April 8th, and our dog Ziggy (he was also her dog) died on May 9th, just over a month apart. We still have one dog and one cat, but they're both "mine." The house is much quieter now. They are both missed.

Ziggy in the prime of life, Midi on Sharon's lap.

June is when I began my work as vocal coach for the rock band school for kids that I've talked so much about. I had no idea when I started with that how much fulfillment I'd get from it. I love every minute of it. It means a great deal to me to be able to pass some of the knowledge I've gained on to young musicians in their formative years, and to get to spend so much time with my friend Todd and his family. Sometimes I have to leave a rehearsal early because I've "hit a wall," but I want to keep doing it as much as I can, for as long as I can. Our next show is coming up soon, and I'm looking forward to rehearsals starting up.

On July 1st, my wife retired from her job of 25 years to stay home with me during this time in our lives. I'll admit, I had a bit of trepidation about this, seeing as how I've had the house to myself all day, five days a week for so many years. But retirement has been great. It's been awesome having her here, and having the freedom in our schedule that retirement brings. It's also nice that she can go to the doctor with me when it's called for. We're still figuring this whole retirement thing out, but I can tell you one thing for sure. There's nobody I'd rather spend my days and nights with.


39th Anniversary Brunch at Red Rocks

I had a blood draw on July 8th and an appointment with my oncologist on July 12th. That was when the trouble started. That's when my PSA began to rise, from 1.42 to 1.97, indicating that Lupron was losing effectiveness. But my oncologist wanted to wait and make sure, so we scheduled another blood draw and PSA test for August.

The next two months were tough. On August 20th, we helped our dear friends Derek and Amber move to their new place in the mountains of Colorado. It's hard for me to explain the place that they hold in my heart. They only live 90 minutes away now, but that's enough to make it hard for us to see them, especially in the winter. I'm very proud of them for seizing the opportunity to live their dream, but when we pulled away from their old house here in Denver after helping them load up the U-Haul trailer, I was inconsolable for about two days. That was just the start of a stretch of bad news for us.

Taken at Derek and Amber's moving away party last August

On August 31st, I got the news that my PSA had risen to 2.7, up seven tenths of a point in six weeks. This result prompted my oncologist to order a CT scan and bone scan to see if any new mets could be found. Those scans took place on September 7th. The results came in two days later. On September 9th, 2016, I was diagnosed Stage 4, with metastasis to spine and ribs. The white spots you see in this scan are cancer.


The next week, on September 15th, I had another consultation with my oncologist, and for the first time, I asked him for a prognosis. He said if I continue to respond to treatment the way I have so far, I can expect to live another year or two. If we happen to find a treatment that I respond to better, I could maybe live another three to five years. That was exactly what I was expecting him to say, but it shook me anyway.

He also said he was glad we hadn't gone ahead with radiation treatment. He thought I would have ended up being Stage 4 anyway. So I was right to follow my instincts, and I'm glad I did.

Two weeks later, after another PSA test, I found out my PSA had risen more than two full points in four weeks, to 4.77. My cancer was definitely on the move. So I started on Xtandi, which are pills I take every morning now in addition to my Lupron shots every four months.

But September wasn't all bad. I got to officiate the wedding of some chosen family in September. That's something I'll always cherish. If you remember little Gloria and her sister Maxine from my recent post, The Things You Think Of, this was their mom's wedding. Gloria was the ring bearer, and Maxine was the flower girl.

And by far, the most incredible blessing of 2016 happened in September. Our closest friend Nikki moved back here from California. I can't begin to quantify what her being back here means to my wife and me. It makes all the difference in the world. All the bad news that got thrown at us in August and September doesn't seem quite as bad because Nikki's back home.

Nikki with us last Christmas

Like magic, with Nikki's arrival, the bad news ended, and the good news began. I began taking Xtandi in early October. Two weeks after starting it, I had another PSA test done. My PSA was down to 1.3, the lowest it's been since I was diagnosed. This news was met with widespread celebration, and for good reason. I hadn't realized what a stretch of bad news it had been until I finally had some good news. As far as I know, that's where the number still stands. My next PSA test is in January.

In October and November, I spent much of my time and energy preparing for my last big public performance, which took place November 20th. If you've been reading this blog, you know all about it. You may have seen the YouTube videos of it. It was a very special night for me.

On December 1st, I began the Rick Simpson Oil suppository treatment program that I talk about in my post, Tiny Popsicles. It's going very well so far. No results yet, but I'm tolerating it very well. I've moved up from taking the 350 milligram suppositories twice a day to the 500 milligram ones twice a day, which puts me at 1,000 milligrams per day, which is considered the therapeutic dose level to kill cancer.

I actually love the way it makes me feel. Not high or stoned, just good. Sometimes within the first hour of taking one, I feel a slight buzz, but it's not enough to keep me from doing anything, including work or drive. And boy, does it help me sleep. I haven't had a bad night's sleep since I started taking them. They don't make me sleepy, but when I lay down to sleep, I fall asleep right away, which is not like me. More importantly, when I get up during the night, I fall right back asleep when I go back to bed. I'm getting a good ten hours of sleep every night now. That can only be helping.

I'm sorry if this post went on too long, or if it ended up reading like your aunt Agnes's Christmas letter, but I've hit as many of the important events as I feel I can justify in this long post. There were many others, but if I included them all, the internet would run out of space.

Before I close, I have to mention the names of the new friends I've made this year, both online and in person. You have helped make this year a real blessing. I'm not doing last names or tags anymore, but you will know who you are. Very early on when I started sharing these posts in support groups, Miki and I became friends. Right around the same time, there was Robert, and Pete, and Peter, and Christopher and Lori. I can't imagine the last year without you guys. It's hard for me to believe that we've never met face to face! But one day, we will.

The list of new in-person friends is not as long, but just as meaningful. Garrison. Laura. Sandie. We love each of you, and can't wait to see what the new year brings in our friendship.

2016 was a bad year in many ways, but when I count up all of the blessings, for me, it more than balances out. My cancer got worse, but my circle of love grew exponentially. I am closer to God than I was at the start of the year, and life at home is better now than it was then. So many friendships which began in 2015 deepened in 2016. Janice. Todd and Sandi. Derek and Amber. Thanks for being there, all of you.

I hope and expect to be sitting here writing another retrospective post titled 2017 next year. But whatever happens, thank you for sitting in the mud with me in the meantime. #waroncancer

Tuesday, December 27, 2016

Sitting In The Mud


I have a good friend who's dealing with grief right now. In a recent conversation, I started to make the mistake of saying, "I know how you feel." But I caught myself and said, "I don't know how you feel. I have no idea how you feel. But I'll sit in the mud with you while you feel this way."

I don't think I came up with that phrase. She might have said it in a previous conversation. I'm not sure. I may have gotten it from her the way I think she and her husband got a cold from me. Sorry, guys. Whoever came up with it, it's an apt metaphor for difficult times.

My friend and I have known each other for just over a year. Our friendship bonded around tragedy in her life and cancer in mine. We both realized a while ago (or at least I did - she probably knew it long before) that that's what people in our situation want. We don't want platitudes. We don't want advice or cheerleading. We definitely don't want to be told how to feel. We just want someone to sit in the mud with us.

I think that's what's been so valuable to me and many others about the online support groups dedicated to prostate cancer. There are a whole bunch of people there sitting in the same mud puddle I'm sitting in. I've made some valuable friendships in those groups. There is discussion and information that's helpful, but mainly, it's just nice having people who are there, who understand the nature of your mud.

But it's not necessary to understand. What's more important is just being there in the mud. Presence, not absence. That's what matters to those of us who are stuck there.

The thing about sitting in mud is, it gets messy. If you get too close to my muddy mess, you might get some on you. If you actually sit next to me in it, you'll get as muddy as I am. But that's exactly what I need. I need someone to sit in the mud with me. I need as many people who will do that as possible.

Not everyone will do it. When your mud is grief over the loss of a loved one that nobody understands except you, or a terminal illness that nobody wants to talk about, the number of people willing to just sit with you in it shrinks significantly. It isn't comfortable. Conversations tend to stray away from the light and pleasant, and nobody wants that.

So rather than get down in the mud, some shout platitudes from dry ground. He's in a better place. Keep fighting, you can beat this. Some actually tell us to get over ourselves, get up out of the mud and take a shower. Change our clothes and get on with our lives. As if our lives will ever be the same.

I am blessed to have people who will sit in the mud with me. I have so many, I'll never feel alone. I'm grateful for every one of you. Especially my grieving friend, who sits in her own mud. I think we have adjacent puddles or something.

Therapy is also very valuable to me for this reason. A therapist is someone who's paid to sit in the mud with you! If you have a good one, they will. And I have a very good one. I expect her to sit in the mud with me for the rest of my life.

Part of the difficulty of the mud puddle is feeling like you won't ever be completely clean again. Speaking for myself, I know I'll never be cancer free. I'll do what I can to extend my life, in accordance with my beliefs, but it will take a miracle to cure me. Nothing less. So I'll be in this puddle for the rest of my life, however long or short that is.

Some puddles dry up faster than others. It's not my job to tell anyone else how fast they should get out of their puddle. If I call myself their friend, it's my job to sit with them in it for as long as they need me to.

I didn't figure that out until I fell into this puddle I'm in. I didn't realize how much my friends needed me when they were stuck in the mud until I was. I'm trying to be that kind of friend now, but I have my own mud to deal with.

Your mud may not be grief or illness. There are countless varieties of mud that we can find ourselves sitting in, but they all can be made better if someone will just sit in it with us.

Here's a reminder to everyone who believes in the Nativity we just celebrated. It was the greatest example of what I'm talking about ever. God himself became an infant, and got down in the mud with us. He didn't just sit on his throne and shout at us about how we should live. He got his hands dirty, and his feet, and the rest of him. He did it for the same reason we should do it for each other. Love. So if you need a reason to sit in the mud with someone you say you love, here's one; It's Christlike.

Love doesn't shout platitudes from dry ground. It doesn't give unsolicited advice or judge. Love sits in the mud for as long as it's needed. #waroncancer

Saturday, December 24, 2016

One More Thing


In my family, we have a tradition at Christmastime called One More Thing. After all of the gifts have been opened, someone yells, "One more thing!" and brings out another gift. Many times, it's the biggest gift of all. I once gave my wife a puppy as a One More Thing.

Many times, there has been more than one One More Thing. After the first, someone else would take up the call. There might even be a third or fourth One More Thing. Not often, but it has happened. So in that spirit, this post has a few One More Things.

See, I'm getting into the Christmas spirit. Finally. We watched three Christmas movies one day last week. You can do that when you're retired. Die Hard, Babe, and The Polar Express. If you don't think Die Hard and Babe are Christmas movies, it's your loss.

This past week has been a little rough for me, emotionally. I'm sure you could tell that from my last post. Among other things, we had company scheduled on three different occasions, and all of them had to cancel. None of the cancellations could be helped, and we certainly don't blame any of our dear friends for having things come up that were beyond their control. But it made for a difficult week for me.

My wife and I have spent many Christmases alone, just the two of us. Since we didn't have children, and we moved away from our families decades ago, we've developed our own traditions and generally spent Christmas at home by ourselves. But last year, and now this year, that's started to change. We don't have anyone coming over for Christmas Day this year, but we do for Boxing Day. And there are other friends who will visit during the week between Christmas and New Years. Since my diagnosis, I find I need people around me more than I used to. I have to pace myself, but I need to be with my peeps too.

One more thing. My next PSA test and Lupron shot are scheduled for January. I'll talk more about treatment in a future post, but things seem to be going well at this point. That's reason to be thankful.

One more thing. Three months after having seen the metastasis spots on my spine show up in that bone scan, I still have no pain from them. I'm thankful for every day that's pain free.

One more thing. God is good. I keep saying that I'm getting closer to God, and it's true, but it's not like I'm inching closer to him each day on my own. No, he's revealing himself to me. It's like he threw a big door wide open and he's just showing himself to me. Not really telling me anything, just showering me with his presence. It's indescribable.

One more thing. Thank you for reading this blog. It means the world to me. I hope it's an encouragement to you. If you're a cancer brother or sister, I hope you can relate to my journey. I hope I speak for you in some small way. If you're reading because you know me and are concerned about me, I hope it helps to give you this window into what it's like. I'm gonna keep on writing it for as long as I can.

One more thing. Merry Christmas! #waroncancer

Thursday, December 22, 2016

The Changing Of The Passions


This post won't be very Christmasy. I'm not feeling very Christmasy today, nor have I much this week. Cancer didn't steal it, circumstances did. But that's not what this post is about. Several things have deeply affected me this week, one of which was a post in a support group yesterday by a friend I've met along the way. His name is Dan.

Dan titled his post, "The Death Of Passion." In it, he described how Lupron and Xtandi - the same drugs I am on - have robbed him of the passions he used to have, and even the man he used to be. Once a guy driven by his passions, now he's lost interest in most of them. Now he finds it hard to care about much of anything. He misses the guy he used to be, and the life he used to have.

Many responded to his post. Most of the men who responded felt the same as he does. They miss their old lives, interests and passions. One put it perfectly in a comment. He said, "I must force myself to do everything I once loved." Sounds familiar. Hormone treatment doesn't just suppress our sex drive, and hopefully, our cancer. It suppresses our motivation and ambition too. It's amazing how much of what we accomplish as men comes from the pure drive of testosterone. But testosterone also feeds prostate cancer. So suppress it, we must.

Dan's post resonated with me, and got me thinking. If you've been reading this blog for a while, you know that in my mind, there is a clear demarcation between "pre-cancer Mark" and "post-cancer Mark." The entire theme of this blog is summed up in its title: God's 2 By 4. I feel like God had to metaphorically hit me over the head with a 2 by 4 (cancer) to get my attention, and wake me up to what's important. As a result, I thought, I lost my desire to "run the show." My desire to perform and record has been sharply reduced, if not killed off altogether. But after reading and rereading Dan's post, I can't help but wonder, how much of that is chemically induced?

I recognize that Lupron makes me weak, and makes it hard for me to do things that require a lot of ambition. But I hadn't thought that this new direction my life has taken could simply be the work of a drug in my system, rather than an abrupt life change brought on by the realization that I'm running out of time.

My wife and I led the congregational singing in church last Sunday. It was just a few carols with piano accompaniment, so it was easy. It didn't require much energy output on my part, so I didn't mind doing it at all. But it stirred up a bit of a hornet's nest. A couple of friends who were part of our previous church where I was worship leader came up to me after the service and started trying to push me back up on the platform on a regular basis. Not that it's in their power to do so, but that's their desire, and that was how it felt to me. This only made me upset. It showed that, in spite of the many conversations about this we've had, (and we've had many) neither of them understand how I feel.

Someone needs to explain something to me. Why is it that people understand the concept of retirement in every field except music? In any other line of work, when you retire, people slap you on the back and congratulate you. They tell you to enjoy your retirement. But musicians are expected to keep going until we drop dead. Why is that? Maybe it's because music is perceived to be so integral to who we are, people can't separate the musician from the person.

Many musicians feel this way themselves. I used to think that way.  I'll always do music, I thought. Maybe in a different form, or not to the extent that I'm still trying to make a living from it, but I never thought I'd want to stop doing music altogether. But that was before I got whacked by God's 2 by 4. That was before my first Lupron shot. Now I feel differently, and nobody seems to understand it except my cancer brothers. Some of them don't even understand. When I posted Done Running The Show about this, one of my brothers in a support group commented, "For now." He must not be on Lupron. If he was, he'd get it.

Mostly, I think people's inability to accept that I want to hang it up for good when it comes to performing, recording, and leading worship comes from pure selfishness on their part. They've enjoyed what I've done, so they don't want me to stop doing it. It's about them. But others worry that I'm losing my zest for life.

To be honest, at times, I am losing that spark. I'd be lying if I didn't admit that recent events have reduced my desire to live. I am both horrified and terrified by things that I will not discuss in this blog. There are mornings when it takes an effort for me to take my pills in the morning, and not just because they're so hard to swallow. A lot of things are hard for me to swallow these days. I'm just being open with you about how I feel. And I did take my pills this morning. I haven't missed a morning yet.

On the flip side, my journey differs from Dan's in fundamental ways. He began his post with a very amusing statement: Warning, your results may differ. Please consult your doctor if you have any of these symptoms or you could be just as messed up as Dan is. I can certify that I am at least as messed up as Dan is, but my results do differ. For one thing, I don't miss the old me at all. Not one bit. I like the new Mark much better than the old Mark, and everybody else seems to as well. Except those who want to hear me sing, that is.

I have new passions that I'm excited about. I don't mourn the death of my old passions. I have one more CD project to produce early next year. I want to do it, but the thought of the energy it will take makes me tired just thinking about it. But the thought of selling off my studio gear when it's finished excites me. I'm excited to move on to the next chapter. So for me, it's not The Death Of Passion, it's The Changing Of The Passions. Like the seasons, my passions are changing. Or they have already changed.

I'm excited to continue working with the kids in the rock band school I've talked about. I'm excited to begin the process of turning this blog into a book. I'm excited about sharing my story with as many as I can for as long as I can. I'm excited to get my Chosen Family Chocolate Ice Cream® on the market.

More than anything, I'm excited to experience more of what God is showing me, and to spend as much time with the people I love as I can. That's more than enough to keep me busy for my remaining time here on earth.

I've said many times in this blog that if I could go back in time and change my diagnosis, I wouldn't do it. Not if it meant I had to lose everything I've gained, including all of the friends I've made along the way. Friends like Dan. Not if it meant I had to go back to being the guy I was before. No, thanks.

It's a moot point, anyway. I'll be on these drugs for the rest of my life. So I'm not likely to change my mind. The old Mark isn't coming back, and good riddance to him. So to everyone who has scoffed when I've said I'm retiring from music, who reminded me of every band or artist who did a farewell tour and came back, who can't conceive of how the one thing that drove me for so many years could just disappear, I can only say that you must not have Lupron and Xtandi running through your veins. If you did, you might understand. I sincerely hope you never do.

Dan is a good writer. Several said so in their comments on his post. If he found any joy in writing that post, or in the responses he got to it, or both, I hope he'll pursue writing about his journey. I hope he'll find a new passion in it.

Dan closed his post with this: Find whatever passion in life that you can. I thank God that while I've lost my old passions, he's given me new ones. At my age, my old ones were a dead end anyway. The new ones have real possibilities. I'm sorry if you miss what I used to do, but I hope what I'm doing now has some meaning for you too. I know it does for me. Thanks for getting me thinking, Dan. #waroncancer

Monday, December 19, 2016

The Truth About Christmas


In case you haven't noticed, I tend to be an independent thinker. I don't just go along with popular thought. Even as a Christian, I question everything. So for years I've wished I could go to a church where "the truth" was told about Christmas. And by the truth, I meant the historical facts about its origin as a holiday.

Things like the fact that the Apostles and the First Century church didn't celebrate the birth of Jesus. And the fact that Christmas was created by the Church centuries later in an effort to replace pagan winter solstice festivals that happened around December 25th with a Christian holiday. Many of the traditions that we still use today come from those pagan festivals, like the tree and the Yule log.

Most Christians know by now that Jesus was not born on December 25th. He was born in the spring, during lambing season. That's when the shepherds were out watching their flocks, not in the middle of winter. But if we celebrated his birth in the spring, it would conflict with Easter, the most holy Christian holiday.

So I have no trouble celebrating Christmas at this time of year. December 25th may not be Jesus' birthday, but there's nothing wrong with celebrating his birthday now. And as I approach the end of my first full calendar year with cancer, I realize that the historical facts about the origin of Christmas are not the same thing as the truth about Christmas.

The truth about Christmas is, love is in the air at this time of year. We are reminded of how much we love the people around us, and how much they love us.

The truth about Christmas is, we try harder to be the people we want to be at Christmastime. Though our schedules may be hectic and our nerves may be frayed at times, those hectic schedules and frayed nerves usually happen because we're so busy going to see people we love, or because we're out fighting traffic and crowds buying gifts for those we love. It's the only time of year when most of us expend that much energy on others.

The truth about Christmas is, the music, decorations and lights stir something in us. At least, they do in me. There's a sense of comfort and home in those things. When January comes around, for me, the comfort disappears, and only the cold remains.

There's a generous spirit around this holiday season. People are more giving than at other times of the year. We tend to entertain more, and socialize more. Long neglected relationships are rejoined with a call, a visit, or a card. That's the truth about Christmas.

I am not one who cares much about whether people say "Happy Holidays" or "Merry Christmas." From my point of view, the holidays go from Halloween to New Year's Day. I greet people by whatever holiday is next. Happy Halloween, Happy Thanksgiving, Merry Christmas, and Happy New Year. But if a retailer wants to save time and ink by lumping them all together into one season, along with other ethnic holidays at this time of year, it doesn't bother me. Because those things have nothing to do with the truth about Christmas. I didn't go to that store to hear the correct greeting. I went to buy something for someone I love.

Of course I believe in the Biblical account of the birth of Jesus. If you follow me on Facebook, you've seen my relentless Bible Blog posts about it. I believe in celebrating his birth at this time of year, whether he was born in December or not. But I think Christians sometimes get a little defensive about this holiday. Yes, we celebrate the birth of Jesus at this time of year, but Christmas is about more than that. It's about family. It's about friends. It's about love and giving. It's about telling our kids that a fat man in a red suit delivers toys to all of the children of the world in one night, for crying out loud! It's about believing in miracles.

Last Christmas was my first with cancer. Now, after more than a year with this disease, after having been diagnosed Stage 4 and being given a prognosis which predicts that I won't be here for many more Christmases, this season has become much more precious. It's true that I've had a hard time getting into the spirit of the season this year, for whatever reason. Or maybe for one very obvious reason. But I'm there now. I'm not letting cancer steal this Christmas.

So to the traditionalist who boycotts stores for saying, "Happy Holidays" or the skeptic who loves to tell people Jesus wasn't really born on Christmas and Santa Claus was made up by the Coca-Cola Company, I say you're missing the point. I used to be that guy, but not anymore. Now I'm here to tell you that Jesus came to bring love into the world, and love is never more clearly on display than it is at Christmastime.

To quote my wife's favorite Christmas movie, Love Actually, love actually is all around at this time of year. Those who believe and those who don't show and bask in that love on and around December 25th, and in so doing, reflect the love that God sent into the world when Jesus was born. That's the truth about Christmas. #waroncancer

Tuesday, December 13, 2016

Cancer Won't Steal My Christmas


My last post struck a chord with many of my cancer brothers and their loved ones. One comment in a support group rocked me. One guy said that the day he found out he was metastatic, he had to buy new tires for his old car. He remembers what a crisis it was for him to buy tires with a five year warranty. I can relate to that all too well. But another comment, in a different group, from a new friend, put it in perspective.

She said that while she and her husband, who has prostate cancer, are making some changes to deal with the reality of their situation, she also won't let cancer steal her today. She has today with her husband, and she treasures that. Such a beautiful attitude, and one that I need to get better at having myself.

I've been guilty of letting my doubts about my future steal some of my joy for today. My hesitation at buying the LED spiral tree, pictured above, was all about not knowing how many Christmases I'd be able to set it up. But now I realize that it's more important to enjoy it now than worry about that.

Our front lawn slopes to the east, so the tree tilts a little, as does my Christmas mood. But it shines brightly, setting off the rest of our lights, just as I hoped it would. And it lifts my spirits when I look at it, just as I hoped it would.

None of us are promised tomorrow. We're not even promised five minutes from now, for that matter. My prospects may seem more dire than yours, but none of us knows how much time we have on this planet. The point is not to dwell on what might happen in the future, or on past regrets, but to live in the now.

It's true, I don't know how many more Christmases I have left, but neither do you. Neither do any of us. That only makes it more important to enjoy this Christmas. I don't know if I'll have next Christmas, or the one after that, or the one after that. But I'm pretty sure I'll have this Christmas. So I can't let cancer steal it from me.

Little by little, I've been getting in the mood. The arrival of my spiral tree helped, as illogical as that may seem. The opportunity to sing in a dear friend's Christmas choir also helped tremendously. When you've been in and put together as many church Christmas programs as I have, something's missing from Christmas when you drop out completely.

As a long-time choir director, the opportunity to direct the biggest song in the program with my friend singing the solo was such a blessing. I told our friend that I wasn't sure I would ever get to direct a choir again, because I'd have to put the whole thing together. I don't have the energy to do that anymore. I'm done running the show. But she gave me the chance to step in and direct a really fun arrangement of O Holy Night, and my only responsibility was making sure I knew the song well enough to direct it. If you want to see the video, check my Facebook timeline. It's pretty awesome.

And that's not all she did for me. She also let me speak to the choir about my illness, and tell them what a blessing and privilege it was to be part of their choir for a while. After I shared with them, she called on the choir to surround me, lay hands on me and pray for me. She led the prayer, and there's nobody else I'd rather have pray with me. This woman has a direct line to God.

There were two services that morning, and the prayer time happened right before the first service. So I was very emotional during that service. She was always telling the choir to smile, but I didn't smile much in that first service. I was too busy crying. Christmas was starting to come closer for me, and not just on the calendar.

I've finally started listening to Christmas music, but I have yet to watch a Christmas movie. I'm just not there yet. So I guess I'm still letting cancer steal some of my today.

Being a cancer patient consumes our identity if we let it. In a post from last April, What Am I? I said, "Like many, if not most cancer patients, I feel like that's what I am. That's all I am. It's the entire focus of my life. Everything else fades in comparison." I still feel that way, but that attitude can steal our todays.

Living in the now. Because this moment is all any of us have. I believe that when we live in the now, we come close to what Heaven will be. In Eternity, there is no past or future. Time does not exist. Time and space are part of the physical universe, and Heaven is an altogether different plane of existence. In Heaven, there is only an eternal present. An everlasting now. So when we live in the now in this life, rather than letting past hurts, resentments, regrets or mistakes preoccupy us, or letting doubts and worries about the future weigh us down, we experience a taste of Heaven here and now.

So I won't let cancer steal my Christmas. I won't let it steal my today, despite what it might do to my tomorrows. Today I am blessed, and loved, and well on my way to getting in the Christmas spirit. I might even watch a Christmas movie tonight. #waroncancer

Friday, December 9, 2016

The Things You Think Of


Even though I've begun a new treatment that I hope will extend my life, and my last PSA number was encouraging, my prognosis has not changed. Nobody likes it when I go there, but in my head, I can't help but go there all the time. I'm constantly reminded of it by so many things, from the mundane to the meaningful.

I'm reminded of it by the beautiful cross pendants that my wife just learned to make. The picture above is of her first batch. I asked her to start making them, since she makes jewelry, for me to wear and to give away to cancer patients that I feel led to give them to. I love them, but every time I put one on, it's a reminder.

My mortality is a frequent topic of conversation between my wife and me, because we have to be prepared for the day when she won't have me around. Who will troubleshoot the wifi? Who will run my website and ship CD orders, which will hopefully continue long after I'm gone? I've always been the tech guy around here, and if you've been to our house, you know how we have TV and music in just about every room. That's important to me. Now we have to think about simplifying that setup so my wife can run it on her own.

You're probably thinking, "Thanks for the buzzkill, Mark! Merry Christmas to you too!" The truth is, I've had a lot of trouble getting into the Christmas mood this year. I thought maybe it was because of the warm weather we've had until recently, but the weather's cold now, and there's snow on the ground. The decorations are up, so I should be in a festive mood, especially considering the fact that I don't know how many of these I have left. But then, neither do you.

Even with Christmas only a little more than two weeks away, I'm still not feeling it. Could it have anything to do with the fact that my mortality keeps tapping me on the shoulder? Here are a few examples, both mundane and meaningful.

A few years ago, when LED lights started to become popular, I decided to change all of our outside lights to LED, from our porch lights to our outdoor Christmas lights. We had a few incandescent outdoor decorations, but incandescent and LED don't mix well. It's warm light vs cool light. So I threw my old incandescent decorations away and started over, and I've gradually been adding one LED item each of the past few years.

After a few years of adding pieces, I've come close to having the kind of display I want. It's nice, but it needs one more thing to make it complete, at least for me; some kind of centerpiece to go in the middle of the front lawn. What I wanted was an LED spiral tree, since they are collapsible, and don't require much storage space. But for the past several years, LED spiral trees have been hard to find, or very expensive.

Just out of habit, I looked for one this year and found a very affordable one with good reviews on Amazon. Prices are finally starting to come down on those. But I hesitated. In past years, I wouldn't have even thought about making a purchase like that. I wouldn't have asked my wife about it. I would have just done it. But this year, I find myself wondering how many more years I'll be able to put the outside lights up. If I'm able to do that for two more years, I think I'll be doing really well. I know that after I can't put them up anymore, nobody will. So what's the point of adding anything now?

I'm not being morose, just practical. In our financial state, I have no business making frivolous purchases anyway. And in my mind, any purchase needs to be measured against the standard of whether or not it will continue to be useful to my wife when I'm not using it anymore. That mindset kinda puts a damper on my Christmas mood.

I asked my wife about this. I told her how much the spiral tree I found costs, and what I was thinking about making those kinds of purchases, and she said to go ahead and order it. She said if we only enjoy it for a year or two, at least it will make those Christmases more special for me. At least I'll get that much enjoyment out of it. So I ordered it, and it should arrive soon. I can't wait to set it up. I have a feeling that it will start to feel like Christmas for me once it's here, making my outdoor light display complete for the first time since the changeover to LED.

The things you think of. Little reminders that keep cropping up. I was making an online purchase this morning, and the website asked for my credit card information, including my card's expiration date. My current credit card (we only keep one, and pay the balance to zero every month) has an expiration date in 2020. I couldn't help but think that my credit card might have a better expiration date than I do. I might never have to renew this card.

It's December, so a lot of movies are coming out. We've been to a couple, and expect to go to a couple more this month. Every time I go to a movie theater, I see what their senior discount is, and wonder if I'll ever get to use that senior discount. The things you think of.

But every reminder I've had recently has not been mundane. One that happened on Thanksgiving has had great meaning for me. I've been carrying this around since that day, and probably will for the rest of my life. Let me tell you about my Thanksgiving with Gloria.

Gloria is seven years old. She and her sister and their mom are all like family to my wife and me. Chosen family. My wife and I don't live near our families, so we spend our holidays with close friends, which I hear referred to now as "chosen family." I like that term. I love both Gloria and her sister Maxine desperately, but Gloria and I seem to have a special bond. She wanted to sit next to me at the Thanksgiving dinner table. After dinner, she spent a significant amount of time on my lap.

As we sat down to eat, our hosts asked me to say a few words. I said that I had been hearing the term, "chosen family" a lot recently. I told our friends how thankful we are to be part of their chosen family, and to have them be part of ours.

Of course, I brought the latest batch of my dark chocolate ice cream for all of us to try. Gloria loves my ice cream. She wants to know how to make it, but I haven't figured that out for myself yet! We had been discussing with the whole group what the name of the ice cream should be, and Gloria said she knew what it should be. I asked what she thought, and she said, "Chosen Family Chocolate." We all looked at each other and said, "I like that!" I think Gloria may have named my ice cream that day.

Then she said something that broke my heart. We were talking about a memorial garden on our host's property, where the ashes of loved ones and pets are buried. Our dog Ziggy's ashes are buried there. I talked about how Ziggy had always wanted to stay at their place, and now he gets to stay there permanently. Our dear friend Nancy said that her ashes would be buried in that garden one day. I said that I didn't know where I would be. I'll be wherever my wife wants me, I said.

Jokes were passed around about how I'll have no control over that. Nancy suggested that they could keep "a piece of me" to bury in their garden. A portion of my ashes, you understand. They're not gonna bury a finger. I said yes, and I'd also like some of my ashes to nourish my lilac bush in our back yard, which is so precious to me. Still eating her ice cream, Gloria interjected, "And I will cry and cry."

I was floored, and my heart melted. Can a heart break and melt at the same time? Mine did. I immediately asked her mom if Gloria and Maxine knew about my prognosis. I put it in a rather crude way; I asked if they knew that I'm likely to die before they reach middle school. She winced, and said yes, they know. My heart broke a little more.

Last year, we had pretty much this same group over to our house for Thanksgiving. As has been my practice post-cancer, I had a blessing prepared for each person at the table, and I took great joy in speaking them aloud to each one there. Gloria and Maxine were the last ones I spoke to. I told them how special they both are to me. When I spoke to Gloria, she climbed up in my lap and said she wanted to stay with us for a week.

After the individual blessings, I had one more thing to say to these young girls. I told them I had a new goal, and asked them if they wanted to know what it was. With shining eyes, they both said yes. I told them that my new goal was to dance at their weddings. That goal seems out of reach now. I'll be doing well to make elementary school graduation.

I tell that story of last year's Thanksgiving because, based on conversations that Gloria and I had at this year's Thanksgiving, I have no doubt that she remembers what I said. She knows that I'm not likely to achieve my goal of dancing at her wedding. She knows we weren't just referring to the fact that she's a young girl and I'm an old man, so naturally, she will outlive me. She knows that day is probably coming while she's still a child. And she will cry and cry.

I can't get that out of my head. The vision of an inconsolable Gloria stays with me, weeks after Thanksgiving. Maybe that's part of what's stealing my Christmas joy. Even a spiral tree won't chase that image away.

While my last post, which has gotten quite a reaction, shows that I haven't given up, that I'm trying new treatments to try to beat expectations, I'm still reminded at every turn what the most likely outcome is. It's just part of the deal when you're in my shoes.

What Gloria said on Thanksgiving still haunts me. I know she won't be the only one crying. But when she's done crying, she will grow up with the knowledge that I love her very much, and she'll always be able to say that she picked the name for Chosen Family Chocolate Ice Cream. #waroncancer

Tuesday, December 6, 2016

Tiny Popsicles


This is a post I've been waiting to write for a while now. The process has taken some time to get going, but my new alternative treatment program is underway. It's a concentrated cannabis oil called Full Extract Cannabis Oil, or FECO for short. For my type of cancer, it's taken in suppository form. Let the jokes begin.

I know there are some who are troubled by the idea of medical marijuana, or scoff at it, or just disagree with it. I hope you'll hear me out. Trust me, there's nothing recreational about this. Does the picture above look recreational to you? This is not something I ever thought I'd like to do for fun. And I'm not. This is how it's done, apparently.

FECO is a purer version of Rick Simpson Oil. If you haven't heard of Rick Simpson Oil, there's lots to find out about Rick Simpson and his oil on the Google machine. He says he cured his own skin cancer by soaking a bandage in the oil and covering his skin cancer with the bandage. He intentionally made his oil easy to make at home, and has given away, but never sold his oil to thousands of patients. There are many reports of people cured of their cancer using Rick Simpson Oil.

I don't make mine at home. I have what the state of Colorado calls a caregiver. He grows the plants that are needed to make my medicine. He makes the oil, and gets it to me. He's been my caregiver since I was diagnosed. Under his care, I completed a 120 day program of Rick Simpson Oil early on in my journey. I took it orally, in capsule form. 1,000 milligrams per day for 120 days. Boy, did it make me stupid. I couldn't do that again, because it impaired me so much.

The first step was getting my medical marijuana card renewed. For that, you don't go to your primary care doctor. You go to a doctor who specializes in that. My caregiver found one who took appointments and I met him at the clinic.

I don't know what I was expecting. Maybe a Rastafarian with a twenty dollar online degree, or a burnout in a shabby storefront who can't believe this is what his practice has come to. Instead, this clinic was in a newly gentrified part of the city, in a nice old building with a welcoming feel to it. The staff were all very friendly, including the doctor, a man I'd estimate to be in his seventies.

My caregiver was there with me. He was getting his own card renewed. The doctor saw us together. He asked me what my stage was. I told him it was stage 4. He said he didn't like to hear that number. I didn't either! I showed him my latest bone scan to prove my condition. It turned out that he and my caregiver were from the same area of New Jersey, so they chatted a bit about that. It was a very friendly exchange.

The doctor came across as very enthusiastic about the benefits of medical cannabis. This is not some cynic doing it for the money. He's in it because he believes in it. He told me that, in a case like mine, he hasn't seen a cure, but he has seen extension of life and help with pain. I'll take both of those. He signed both of our licenses, and we were all set for the next year.

As I said above, the recommended way of taking FECO for prostate cancer is in suppository form. The suppository releases right next to the prostate. If properly inserted, there is very little, if any sensation of being high. Both of these are important factors for me. I want it to be concentrated in the prostate area, and I don't want to take time off being impaired from medical marijuana any more than I want to take time off to do chemo.

Without going into a botany lesson, the two best known parts of the cannabis plant to have medicinal value are CBD and THC. THC is the ingredient that gets you high. CBD has most of the medical benefits, I think, including pain relief. But it's THC, when used in combination with CBD, that has been shown to kill cancer.

The dosage level is high. To reach what's called the therapeutic level for cancer, 1,000 milligrams of THC are needed per day for 90 days. Let's put that in perspective. Unless you're a heavy pot user, a ten milligram edible is as strong as you'd want. Especially if you are a tourist here trying it for the first time. And the pot tourists are legion here. But I'm supposed to take a thousand milligrams? Every day? Not possible. Been there, done that. Was too stoned to buy the T-shirt. This time around, I have too much to do.

I joined a couple of cannabis for cancer groups on Facebook, and learned that the most effective way of taking it for prostate cancer is also the least impairing way. As a suppository. So I decided to pursue that as an alternative treatment.

My caregiver showed me what to do. He ordered the molds and gave them to me. Also the syringe and the jar for the oil. The oil is 25% strength, almost 100% THC, with coconut oil as a carrier. I draw the oil with the syringe and inject it into the molds. Coconut oil mixed with FECO isn't solid enough at room temperature for this purpose. It has to be frozen. Yes, friends, we're talking about putting tiny popsicles up you know where.

When I was a kid, when the ice cream truck drove by, one of my favorites was a sherbet treat called Pushups. Anyone remember Pushups? This gives Pushups a whole new meaning. I won't get too graphic, but like handling ice cream with your fingers, these frozen treats melt fast, so your aim had better be good. Mine was not so good this morning, but it's getting better.

I want to be careful about the gross out factor here, so I won't go into detail about how it's done. But there is a specific way to do it to insure that you don't hit a vein and get uncomfortably high for hours, if not days. I wear a glove, of course. Afterwards I have to sit still for about fifteen or twenty minutes and allow it to absorb. Don't want to lose any oil.

I do this twice a day, morning and evening. I rarely feel any sensation of being high from it. Even when I do, it's very mild. I'm able to work and function normally. It doesn't impair me. It does help me sleep, though.

My caregiver gave me two sizes of molds. The ones I'm using now are around 350 milligrams. That's why I have to be careful. If I hit that vein with a 350 milligram dose all at once, I will be very uncomfortable for a day or two. Once those are used up, I graduate to some 500 milligram molds he also provided, which I'll also take twice a day. That's the target dosage to kill cancer, remember. The therapeutic level. 1,000 milligrams, or one gram per day. But taken that way, I don't think it will be any problem after having done 700 milligrams a day for a few weeks.

My caregiver has a concern about this approach. He says if I don't feel high from it, it means that no THC is reaching my bloodstream, where the cancer is spreading. I think he may have a point. I've asked about this in a cannabis for cancer support group, and so far, the responses have agreed with my caregiver. Suppositories are good for localized cancer confined to the prostate, but once it gets into the bloodstream, it needs to be attacked there.

The oil can be taken orally. I've tried that at times when I don't need to go anywhere, and my work is done for the day, so I can afford to be impaired. And to be honest, I like it. It's a very pleasant sensation. Are you going to judge me for that? Are you going to tell me I shouldn't feel high in order to get THC into my bloodstream where it can kill my cancer? I hope not.

I believe that God created this plant for our good. Living here in Colorado, USA, I see the advances in medicine that are being discovered from cannabis. Kids with epilepsy are given a natural treatment with no side effects that really works for them, and it's the only thing that does. People with migraines and other chronic pain are helped. And for those of us with cancer, it helps chemo patients get their appetite back, and helps with pain, including bone pain, which is what I'm trying to put off.

My caregiver also gave me some suppositories that are made with cocoa butter, which is solid at room temperature. He says he's working on making the oil that way. That would be great. I've tried the cocoa butter ones, and they're easier to work with than the popsicles. But then the title of this post would be Cocoa Butter Bullets.

There are plenty of crude details about this, and crude jokes to go with them, but I'll pass on those for this post. If we know each other well, there will be plenty of time for that. But this is no joke. I've informed my oncologist about this, and he has no problem with it. He doubts it will do me any good, but he doesn't think it will do me any harm. One of the great things about cannabis as a medicine is that it has no known interactions with any other medication.

My next PSA test and Lupron shot are scheduled for January. We'll see where my numbers are then. This program goes through the end of February. I hope the combination of this alternative treatment with Lupron and Xtandi will keep me pain free and keep my cancer in check for a long time. And there are other treatments to explore as well. Normally, I'd be a "one-thing-at-a-time" kind of guy. Let's just try one treatment at a time so we know what works. But I don't think I have time for that anymore. It's time to start throwing stuff at the wall.

I've promised to be as candid and open about my treatment and its effects as I can be, so I can't leave this out. If it works for me, I want you to know that. If it doesn't, I want you to know that too. As it goes along, I'll let you know how it's affecting me and my ability to do the things that are important to me. As in other areas where you may disagree with me, I hope you'll respect my choices.

One thing I can testify to. I feel no indication from God that I shouldn't be doing this. If you've read this blog from the beginning, you know that when I was declined for disability, I felt the Holy Spirit very clearly indicate to me that I should not appeal, but trust him. We did that, and he has been faithful. I believe that, if I were doing something wrong now, he would let me know. If anything, I feel closer to him than ever before.

I'm not able to travel to other parts of the world for treatment like some do, but I'm blessed to live in a place that many people relocate to just to have access to this medicine that in many cases is the only thing that helps them, or a loved one, or their kids.

Call me an old hippie. Guilty as charged. I do like tie dye and Pink Floyd. But if all I wanted to do was get high, I wouldn't be doing it this way. #waroncancer

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