Thursday, September 21, 2017

What Faith Is


When you have cancer, especially the terminal kind, people tell you to have faith. They tell you to believe in miracles. They tell you to trust God. Well, now I'm doing that, literally. I'm trusting God with everything, including my life. And despite what the odds are, I believe that if God wants me here, I will be here. If he wants me active and at work doing what I love, he will enable me to do it. Cancer can't stop that.

But if he allows me to deteriorate over the next few months and takes me home even earlier than predicted, does that mean my trust was misplaced? Was my faith in vain? Not on your life. My faith is not in a desired outcome. It's in God himself.

I've been waiting to write this post for a long time. My faith has been a hallmark of this blog. It has sustained me through this trial. I've come to some conclusions about what faith is, and what it isn't. All of my conclusions are based on what I believe the Bible teaches, and I've studied this subject intensively for years. But this isn't a debate. It's not theology class. It's real life and death stuff.

I wrote extensively on the subject of divine healing in a pivotal early post titled My Complicated History With Divine Healing. I won't repeat what I said there. Much. But these two posts are related, and they show that this issue has been with me from the beginning, and it's still an issue. Just as there are those who, even at this stage, try to tell me a treatment or diet or supplement will cure me, there are still those who say that if I have enough faith, God will heal me.

But even Christians have different ideas of what faith is. That's why I've wanted to write this post. For two years, some fellow believers have tried to tell me that not only can God heal me, he will, because certain verses in the Bible seem to say that. I just have to have enough faith. But I do have faith. I just don't think faith is believing that a certain thing I prayed for will happen. Faith is being willing to trust, and act on that trust.

I'll never convince those who are already convinced. All I can do is tell you my experience, and what God has shown me.

In church last Sunday, the pastor asked a young girl if she would trust him to catch her if she jumped from the platform into his arms. She said no, but she trusted the tall, strong youth pastor. He told her to jump, she jumped, and the youth pastor caught her. The pastor (who she didn't trust to catch her) asked her, "If you had said you trusted him to catch you, but wouldn't jump, did you really trust him?" The girl said no. She was right. That's what faith is. It's being willing to jump when God says jump, no matter how it looks.

The two most used verses to support what I regard as the "transactional" version of faith are Mark 11:22-24, (and their corresponding verses in Matthew 21, where the same story is told) and Matthew 17:19-20. In both passages, Jesus tells his disciples that if they have enough faith, they will receive anything they ask for. The problem is, we don't get whatever we ask for from God, no matter how much faith we have. Thousands of people have been praying for my healing for two years now. They can't all have no faith. I was anointed in a Pentecostal church recently, and all there seemed convinced I had been healed. But here I am, waiting for a call from Hospice.

This means one of two things. It either means those passages just aren't true, or it means they don't mean what some think they mean. I choose to believe the latter. All of the biblical scholarship I've read on both of those passages holds that Jesus was talking to his Apostles here in private conversations. Matthew clearly states in the above passage that the disciples came to him privately. (v19) He wasn't talking to us. He was conferring power on his Apostles so they could establish his church. So these verses are true, they're just not intended for anyone but Apostles. If you've personally witnessed the resurrection of Christ, (which is the definition of an Apostle) maybe it's for you. Otherwise, you probably don't have that kind of authority.

Keep in mind that even Jesus had to say, "Not my will, but yours be done" in Gethsemane. If even he could not claim what he asked for, what makes us think we can?

But those aren't the only passages in the Bible about faith. For every verse like those, there are at least a hundred where faith was shown by people who trusted God enough to do whatever he asked, no matter the consequences to themselves. The best example of that, to me, is the eleventh chapter of the book of Hebrews. The famous "faith chapter." This is the only place in the Bible where a definition of faith is given. Many think that definition is the first verse, but really, it's the whole chapter.

Most of that chapter consists of examples of obedience. God told somebody to do something, and they did it. Most of the time, what they were asked to do seemed impossible. But they trusted God enough to do it anyway.

I prefer that kind of faith to the kind that says, "I asked in faith, so you have to give me what I want." I think it's the most biblical. And it certainly fits better with my experience, and that of most people. My faith in God is unshakeable. I talk incessantly in this blog about how real God is to me. The reality of God is right in my face all the time now. I have no doubt whatsoever about God's power, or his goodness, or his love for me. I know nothing is too hard for him. So if I am not healed, it doesn't mean I don't have faith. It means God has shown his hand.

This is my favorite passage from Hebrews 11:
13All these people were still living by faith when they died. They did not receive the things promised; they only saw them and welcomed them from a distance. And they admitted that they were aliens and strangers on earth. 14People who say such things show that they are looking for a country of their own. 15If they had been thinking of the country they had left, they would have had opportunity to return. 16Instead, they were longing for a better country—a heavenly one. Therefore God is not ashamed to be called their God, for he has prepared a city for them.

I am living by faith in a more literal way than I ever have before. Some may feel that I've not been given what was promised. And I'm definitely an alien on earth, but God has prepared a city for me.

As I've said from the beginning, I am open for whatever God chooses to do. I have so much faith in God that I'm willing to let him do whatever he wants with me. Because my faith is in him, not in my own prayers. Faith is not believing that I can tell God what to do. It's being willing to do whatever he tells me to do. #waroncancer #bearingwitness

Thursday, September 14, 2017

The Hardest Part


I saw my oncologist today. The news was as expected. Zytiga didn't help, and he has nothing more to offer me that I'm willing to accept. My cancer is growing at an increasing rate, and no medication can slow it down now. Since Zytiga didn't work, that means that symptoms should begin for me in the next few months. His original estimate was that I'd start to experience symptoms within six months after treatment stops working. Treatment stopped working in June, which means we're talking Christmas at the latest.

Before you say he could be wrong, remember that he could be wrong either way. So far, he's only been wrong on the optimistic side.

While we expected this news, it's different when you hear your doctor say it out loud. But that wasn't the hardest part of my appointment today. Not even close.

I asked my oncologist when I should start with Hospice. He thinks I should talk to them right away. Not that I'll need them this month or next, but it will help them get to know us and our needs. If I need treatment again - radiation for bone pain, for instance - I can exit Hospice and go back to their office for that. He will refer me to Denver Hospice, and set up a consultation next week. They'll interview my wife and me, and based on that interview, we'll decide whether to go ahead with Hospice now or wait.

But talking about entering hospice care was not the hardest part. It was related to it, though.

My wife went with me today. We knew this was a key consultation and we both needed to be there for it. We were first called in by an assistant who has taken my blood many times. A very sweet lady named Leara. We have become friendly since I started being treated there in January of 2016. She took my blood pressure and got me logged into the system. We talked about our plans for the weekend. When we talked, I had no idea I'd be saying goodbye to her when we left. Now we're getting to the hard part.

After she left the office, the doctor came in. The startling thing he said to me, the thing I wasn't prepared for, was that once I go into hospice care, I won't go to his office for care anymore, unless I opt out of hospice for some reason. The Lupron and Xgeva shots I got today were the last ones I'll get. It started to dawn on me that I was losing my team.

Then my nurse Melanie came in. There were hugs all around, and jokes about how this was her last chance to see my cute little butt. That's how she describes it, anyway. She gave me my last Lupron shot and Xgeva shot. I was actually sad that I won't be getting shots from her anymore. "No more pokies" is the way she put it. I said, "But I like your pokies!" She's the best poker in the business, bar none.

Getting my shots wasn't anywhere near the hardest part. It was the easiest part. But I had started to become very sad. Not because I'm on my way out, but because I knew I had to say goodbye to these people I love so much. I had to say goodbye to my team. I'm still close to tears about that now.

I didn't have to say goodbye to Melanie, thank God. We will continue to be friends, and she will continue to check on me right till the end. I'll have a nurse provided by Hospice, but that person won't be my Melanie. I am so blessed to have her in my life.

Anyone who has read this blog for a while knows how much I love my team. I've said it over and over. I love going there, and I love those people. And it tears me up to think I won't be going back there for blood draws and tests, for consultations and shots. They're not my team anymore. I've lost my team.

While I am very thankful that Melanie will still be involved with us even in hospice care, I knew I had to say my goodbyes to the medical and office staff who have been so kind to me. I was glad that Leara was there when we approached the front desk. I told her that, when we had talked earlier, I didn't know I'd be saying goodbye to her today. She came around in front and we embraced. I asked to see Nikki, another who has taken my blood for tests multiple times. I've mentioned her before in this blog. As with my doctor and nurse, I thanked both Nikki and Leara for their kindness, and for taking such good care of me.

I spoke with Anne and LaShay, who work behind the front desk. They have both been very kind and helpful to me as well. LaShay is relatively new, and it took her a while to realize just how famous I am in that office. But she was soon calling me by name when I came in, and helped me tremendously to get an appointment at University Hospital to discuss clinical trials. I will miss both of these ladies very much.

Then there was Cindy. She works in the office, and helped me straighten out an issue when I was there last Friday for my PSA test. While I was at the front desk and she was trying to help me last Friday, an elderly gentleman walked up and greeted Cindy. He had been there for his annual test. Apparently that test had come out well for years, and he was going back home still cancer-free. He told Cindy that the next time she was in his area, she should stop in and see him and his wife. She agreed and said she would call him.

As he walked away, I told her how much I loved that exchange. It was typical of the treatment I've received there, and of the culture they have. She told me a story of her interview for the position she now holds. She was told they wanted to hire her, but it depended on her answer to one question. Cindy became a little nervous, not knowing what kind of question it would be. Then she was asked, "How do you feel about treating patients like they're your family members?" She knew she was in the right place.

As Cindy and I embraced today and I said my goodbyes, that story came alive to me. That's exactly how they treat their patients. Melanie may be the most personal example for me, but all of them there, from the oncologists to all of the staff, treat patients like family. They become friends with their patients. They do this knowing that many of the relationships and attachments they form will cost them. They form connections only to lose them. That's why these people are angels. If you live in the Denver area and have cancer, I can't recommend Cypress Hematology and Oncology in Porter Hospital enough. They will treat you like family.

I was told over and over that I can come back and visit anytime I want to. And I will. But it won't be the same. Each time they see me, I'll be worse. I won't be able to spend much time because they'll be so busy with patients they're treating. And soon I won't be able to go in at all.

Sharon and I left, and I was in tears all the way home. Cancer isn't the hardest part. Treatment isn't the hardest part. Dying isn't the hardest part. Saying goodbye is, by far. Saying goodbye to the ones who have cared for me and kept me alive these last twenty months. I'm sure Hospice will send new angels that I will also love, but I'll still miss my team terribly. Saying goodbye to them today was the hardest part of all. #waroncancer #bearingwitness

Sunday, September 10, 2017

The Turning Point


The results of my last PSA test are in. Somehow, I got lab results on a Sunday afternoon. That never happens. But in this case, I'm glad it did. It will make tomorrow a much less stressful day. But we've reached a turning point. The result was not what we hoped for. My PSA is 5.45, up from 3.72 a month ago. Zytiga didn't help, or at least not enough. My cancer is still growing, and there's no holding it back now.

I'll admit that I'm relieved that I no longer have to take Zytiga. It was anathema to me since I first unpacked the box it came in. I now can go back to following my heart. I may be approaching the end of treatment, but at least my heart is free.

I can't tell you everything this means, but I can tell you a few things. It means that the Lupron shot I'll get on Thursday will be my last cancer treatment. It means that the calendar has been accelerated, and hospice is not far in the future. In fact, it could start this week. That's one of the things I expect to find out when I see my oncologist on Thursday.

This also means that, at least in terms of physical healing, I was not the Morsefest Miracle. But I think our being there in the first place was a miracle. The fact that, at Stage 4 for a year, I was able to take part in it so fully is a miracle. God gave me a whole new family because of it. That's a miracle right there.

The hardest part of this has been sharing the news with loved ones. I had a conversation with a friend last night about it. He asked what was new, and I told him I'm being given months. He said, "Months? Less than a year?" "Much less," I replied. I saw another friend who hasn't kept up with my story this morning. I told her that the result of this test would determine if I stay on this medication I tried, or go into hospice care. "But you look fine!" she said. "That's because I haven't done chemo," I answered. "If I'd been on Taxotere, I'd look like every other Stage 4 patient you've ever seen." The look of grief on her face haunts me.

I see those looks of grief everywhere I go now. As the reality of the situation sinks in, many who love me can't hide their sorrow. It breaks my heart to break theirs. Or yours. But as I made calls and sent emails and texts to my inner circle, (a group that keeps growing, for which I am immensely grateful) I find myself apologizing for being the bearer of bad news. It hurts me to see how this hurts you. I am the one who is dying, but you are the ones who will have to live with it. I am so sorry for that.

I love each and every person who reads this blog, but I have to say something to some of you. Not all, by any means, but some. The time for denial is over. This is going to happen, and soon. I can feel it. But that's a whole other blog post.

I am tired of treatment. After two years, I'm ready to call it a day. No more pills, and after Thursday, no more Lupron shots. I finally get to do what I've wanted to do from the beginning of this. Just trust God. To that end, I ask everyone who reads this to please refrain from suggesting treatments or diets. No videos, articles, or links, please. We're past that now. What I need from you is empathy, prayer and support. This is an appointment we all must keep one day. Nobody gets out of it. I know I'm special, but I'm not that special.

I emailed Neal Morse today to tell him my results. When we talked after the second worship service after Morsefest, he asked me to keep him informed. In my email, I told him what the result was, and thanked him for his ministry to me and so many others. Then I referred to that conversation we'd had just a week ago. I told him then that if God heals me, to God be the glory. And if he doesn't, to God be the glory. Either way, he is Lord. To paraphrase Job, the Lord gives, and the Lord takes away. Blessed be the name of the Lord.

I have much more to say, but it can wait. I want to talk about trusting God, and what that means to me. I want to explain my view of mortality, and tell you about this feeling I've been having for about three weeks. I want to explore the concept of Heaven being Home, and what that means. And so much more. But that's for later. Make no mistake, I will bear witness. I will keep the faith.

I'll never be able to express my gratitude enough to all of you who read this blog, react and comment. It's very reassuring to receive so much love and support. Please stay with me all the way to the end. It's gonna get pretty grim, I can't lie. I will look death in the face and not flinch. In fact, I will laugh. Because death has no hold on me. Jesus defeated death, hell and the grave when he rose again. Because of him, I will rise again too. #waroncancer #bearingwitness

Thursday, September 7, 2017

All The Marbles


I rescheduled my next PSA test just now. Originally, it was scheduled for Monday morning. Now it's tomorrow morning at 9:00 AM, Mountain Daylight Time. I didn't reschedule it because of a conflict, or because I just can't wait for the results. The appointment was changed because I'm running out of Zytiga.

Heather, my personal pharmacist for medication that's delivered to my house, called yesterday to ask if she should send more. I told her that I only have enough left for three more days, but since this a thirty day trial period for me, I don't want to order more unless I know it's working. I also don't want to have skipped a dose when they take my blood. So I'm getting my blood drawn tomorrow.

I've said a couple of times before that a blood test was for "all the marbles," and it was always true. But it's more true this time than it's ever been. My last PSA result was 3.72, more than double the number I got in June, which was 1.41. This indicated that my cancer was growing fast, and previous treatments had been ineffective. That's why we decided to try Zytiga. I've now been on it for almost a month. This test will show one of three things. I'll take them one at a time.

If my PSA is down, even a little, it means Zytiga is working, at least temporarily. A downward trend in my PSA would indicate that my cancer is shrinking instead of growing. That was the result I got with Xtandi for about six months. My PSA shrank to impossibly low levels for a while, and everyone got their hopes up. Except me. I knew my cancer would find a way around it, and it did, in pretty short order. Any benefit from Zytiga will be temporary as well, and probably shorter-lived than my good results from Xtandi were. There is a law of diminishing returns with these things.

But I'll take whatever time Zytiga will give me, though my heart still patiently waits for the day when I can stop. I still hate it with a passion. But that won't stop me from calling Heather to tell her to send more if it's working.

If my PSA is higher than 3.72, it means Zytiga had no effect. In that case, I'll stop taking it. I'll also have to set up an account with Hospice. The countdown will have begun in earnest.

You may remember that, in my last consultation with my oncologist, I asked him how long before I should expect to start having symptoms. He said he expects symptoms to begin within six months of when treatment stops working. If the Zytiga experiment proves a failure, it means that treatment stopped working in June. You do the math.

Of course, he could be wrong. But he could be wrong either way. So far, he's only been wrong on the generous side. When I ask him for a number, he always gives an optimistic estimate. He wants to give his patients hope. He estimated that I'd get eighteen months to two years from Lupron alone. I got ten months. He thought I could get at least a year from Xtandi. It was effective for six months. The six month figure could be generous too.

Even if I get a few additional months from Zytiga - which I will gladly take - we're still talking spring at the latest for symptoms to start. Probably more like December or January. And once symptoms start, the rest will happen very quickly.

But as I said, there is a third possibility. It's possible I was miraculously healed at Morsefest last Sunday. If you haven't read about that, check out my last post, Heaven In My Heart. How will I know from this test if I'm the Morsefest Miracle? If my number is suddenly in the "undetectable" range, .03 or below, it will indicate, but not prove, that my cancer is gone. To prove it, we'll need an MRI and bone scan. If those look clear, maybe there will be a biopsy to be sure.

Make no mistake, I believe in miracles. The fact that I'm still walking around symptom-free is a miracle. Two days from today, September 9th, 2017, I will have been diagnosed Stage 4 for a year. My cancer has grown exponentially in that time, but I still can't feel it. As I said in my last post, no one needs to convince me that God can heal me. I know he can.

But I still struggle with the issue of divine healing. To understand why, please read an early post of mine called My Complicated History With Divine Healing. In addition to what I express in that post, there is the fact that thousands of people have been praying for my healing for almost two years now, and God has not seen fit to heal me yet. In fact, during that time, all my cancer has done is get worse. So I had basically concluded that it isn't God's will to heal me. It feels to me like it's his will to take me home.

But I could be wrong. I certainly hope I'm wrong. But there is another problem with the idea that God may have healed my cancer last Sunday. That problem is my friend Paul, who sat in his wheelchair while they prayed for me. I know they've done the same thing for Paul, but he still is confined to his wheelchair. God did not choose to heal Paul. For him, God grace must be sufficient. This is a bond that he and I share. We both feel it's God's will to show himself to us in unusual ways rather than heal us. It's to use us as an example of how he is there even in the hardest times.

Maybe it's sacreligious for me to say this, but if God heals me, he'd better heal Paul too. And my dad, while he's at it. If he heals me and not them, he and I are going to have a problem.

I expect to get the results Monday morning, maybe before. Of course, I'll tell you everything, as soon as I call a bunch of people. Only one of the three possible results I've listed will result in my continuing with Zytiga. Personally, I think it's the least likely of the three. I think this result will show that my cancer is gone, or beyond all control. It will give back the normal life span I thought I had before this started, or accelerate my sell-by date. This one really is for all the marbles. #waroncancer #bearingwitness

Monday, September 4, 2017

Heaven In My Heart


Morsefest is over. I think I'll be buzzing over this for a while. It was everything I could have hoped for and so much more. I need to back up a bit from where I left off in my last post to give you context.

After Friday night's marathon concert, we arrived in our hotel room around 12:30 AM. Considering how tired we both were, and the fact that we didn't need to get up early, one would think we'd get a really good night's sleep. But we didn't. Neither of us did. An attempt at a nap in the afternoon proved fruitless as well. I was running on fumes again. But God had reserves I knew nothing about.

At Friday night's concert, concern was expressed by the camera crew that Paul was not in the shot. He and Neal are good friends, and it was thought that Neal might want to come down and interact with him. They wanted to get that on camera for the DVD. There was talk of placing us in the center aisle, just beyond the ramp that extended from the stage. But Paul was concerned that when people stood, he wouldn't be able to see. Paul is in a wheelchair. After the Inner Circle concert Saturday morning, the issue was discussed further. By dinnertime on Saturday, they had figured out where to put us.

Paul and me in our prime spot Saturday night

At dinner, once again our group was seated at our table. We ate and enjoyed each other's company while more people came by to offer words of encouragement. We wondered where we would be seated for the concert. Wherever it was, we knew they would take good care of us, because of the servant's heart that everyone we came into contact with had.

After dinner, as we sat and talked, a man came to our table and asked if I'd be willing to be interviewed for the DVD. I thought he must be talking to the wrong person. No, he knew my story, and thought it would make an inspiring segment for the special features on the disc. He also felt the video would be very meaningful to the band. He asked our friend Mark to interview me, not knowing what a pro Mark is at that. He worked in radio for years.

We donned our lavelier microphones, sat as close together as we could for the shot, and Mark began asking me questions. I don't remember much of what was said, but it was very emotional. Both of us felt the presence of God as we spoke. When it was over, I expressed regret that I'll never see the DVD. It takes them a year to put these things out. By the time the night was over, I had more reason to wish I could see the DVD.

When we were ushered into the auditorium that time, we were escorted down front and center. Paul sat nearest the ramp. I assumed that his friend Angus or maybe Mark would sit next to Paul, and we'd be farther down the row like we were on Friday. But I was told to sit next to Paul. They wanted me in the shot. They wanted Neal to be able to interact with me on camera too. Whaaaat???

This was our view of the stage on Friday night.


Not bad at all, eh? We were thrilled with this view. Our only complaint, if you could call it that, was that we like to be on the other side of the stage, where our favorite guitarist Eric Gillette stands. He's the one farthest away in the above picture. But on Saturday night, this was our view.


Eric walked right up to me so I could get this shot. I've never had seats like this for a concert. And these seats were for the DVD taping and final performance of my all-time favorite album. In addition, they put a bunch of crazy young Brazilians in the front row next to Sharon and me. Yes, this group had traveled from Brazil to be there for Morsefest. Their enthusiasm was infectious. They were placed in the front row, along with Eric's wife Jaci, for entertainment value. They were also wanted in the camera shot.

It's hard to be a 62 year old white guy standing next to young guys like that. I tried to keep up with them, and surprisingly, did pretty well. Stamina-wise, I had enough adrenaline to bounce around with those crazy young Brazilians the whole night. God's reserves. On the uptempo songs, I rocked out with the best of them. At one point, Neal came right to the edge of the stage in front of me. He and I rocked out face to face while he played a guitar solo. How cool is that? I wonder if that will be on the DVD.

As fun as all of this was, what will stay with me is the spiritual impact of that night. The album they were performing for the last time is an album I talk about in my post The Album I Can't Stop Listening To. This album spoke deeply to me at a very difficult time. It's been a balm to my soul since I first heard it in January. And now, my favorite band was performing this album live right in front of me, so close I could touch them.

It was very emotional for me. Two songs in particular, Breath Of Angels and the climactic Broken Sky/Long Day finale, had tears streaming down my face. Breath Of Angels is a song I want sung at my memorial. It's loaded with emotion and meaning for me. At the end of the song, I was sobbing. When the Broken Sky/Long Day finale came around, I alternated between crying tears of joy (caught on camera by the concert photographer) and jumping around like a crazy young Brazilian, ultimately turning around to face the crowd and lead them in shouting "C'mon!" along with Eric Gillette at the album's climax. Not that anyone needed to be led. We had all been waiting for two hours to join in that shout.

After the last encore, while the packed house roared our enthusiasm, the band lined up at the front of the stage for their group bow. You know you have good seats when the band lines up for their bow and it looks like this.


Afterwards, no one wanted to leave. We stayed for at least an hour talking with friends, taking pictures and basking in the afterglow. Several who were not staying for Sunday came to say their goodbyes and express their love and support. New friendships were nourished. Our #progfamily didn't want it to end. And for us, it wasn't ending. But wait, there's more....

Morsefest ends with a worship service on Sunday. Or two. The first service was held in the same church worship center where the concerts were held. The second was at a small church plant in the Nashville area called City On A Hill. At the start of the day, Sharon and I only intended to attend the first service, then go back to our room for a much needed nap before we left for the airport. But those plans changed.

In the first service, Neal led us in some worship songs, then opened it up for testimonies. Anyone could share whatever was on their heart. I knew I would speak, but I also knew they were planning to pray for me. I thought I should wait to speak until it came to that time of the service. When the time came, Mark stood and introduced me. I remember asking if everyone there knew my story. Some didn't, so I gave them a brief synopsis. Then I began sharing from my heart. Like the interview, I remember very little of what I said. This was no prepared speech, like I'm so used to delivering. I was being given the words to say in the moment.

After I spoke, a large group of people gathered around me, placed their hands on me and prayed for my healing. Sharon and I joined hands at the center of this circle. Everyone prayed aloud, all at once. This was a sound I hadn't heard since I was a teenager. An elderly man approached me and asked if he could anoint me with oil and pray for my healing. I agreed, and he dabbed a bit of olive oil on my forehead. He placed his hand on my head and took control of the group prayer in a commanding voice. He prayed with great authority, confident that God had healed me in that moment.

I felt no change, except for a great spiritual boost. God was very real. I can't tell you if I was healed or not yet. I've been given no spiritual sense that it happened. But I get a blood draw a week from today. We'll know for sure a couple of days later. Stay tuned. Some are already calling me the Morsefest Miracle. Maybe I'll get to see the DVD after all.

Afterwards, I was hoping to get a chance to talk with Neal. I had a question I wanted to ask. But he had to leave for the service at City On A Hill. He asked if we were coming to that service. I asked if he wanted us to come, and he said yes. He wanted a chance to talk, and didn't have time then. I think he also wanted me to share in that service like I had in this one. So our plans changed. We rushed back to our hotel, packed up, checked out, and managed to get to City On A Hill just as the service started.

How many rock stars do you know who lead worship in a church plant held in a small basement room? Exactly. This tells you everything you need to know about this man. This service was much like the first. Worship music followed by a time of sharing from anyone who felt they should share something. One person after another got up and spoke. It was amazing how each testimony seemed to lead into the next.

At one point, I felt moved to share how God had used cancer to bring me "to the end of myself" so I can learn to trust him and finally become the man he always intended me to be. After the service, Neal and I talked. He told me to stay in touch and let him know how I'm doing. I asked him the question I wanted to ask, and got the answer I was hoping for.

This was my last wish for Morsefest. My first was to experience the music and the production. The second was to have some contact with the band, since most of them, if not all, would now know who I am. The third was to meet people I've been wanting to meet for a long time. The fourth was to have that conversation with Neal. All of my wishes were granted and more, beyond my wildest dreams. Front row seats both nights? Interviewed for the DVD? Getting to share with so many what God is doing in my life? These were not on my radar.

The title of this post is also the title of one of Neal's songs; Heaven In My Heart from Sola Scriptura. The first two choruses of that song go like this:

So in my hour of pain and sorrow
Jesus will walk me through the dark
'Cause if I die with him, I will rise again
With heaven in my heart


I don't know if I'll be the Morsefest Miracle or not. No one needs to convince me that God can heal me. He may very well have done that yesterday. The question is not can he, but will he? Did he? There's only one way to find out. But I can tell you one thing. There's no other rock music festival where I'd even be talking about that. And as you know, I'm on board with whatever God wants to do. Because if I die with him, I will rise again with heaven in my heart. Until then, the heaven on earth I experienced at Morsefest will have to be enough. #waroncancer #bearingwitness #morsefest2017

Sunday, September 3, 2017

The Kindness Of Strangers


We are here at Morsefest, and our hearts are overflowing. The first day was an emotional, exciting, thrilling, and altogether exhausting day. And the next day, we did it all over again. Through it all, we've been acutely aware that we are only here because of the kindness of strangers.

We arrived here in the Nashville, Tennessee area a day early. The idea was for me to be able to get a rest and recovery day before the excitement started. That didn't exactly work out. I had a terrible night's sleep on Thursday night. In fact, I haven't slept well for over a week, which is unheard of for me. I'm blaming prednisone. But we're not here for me to bellyache about my treatment. There's plenty of room for that in other posts. This one is all about what love can do.

I told the story of how this miraculous trip came to be in my post The Conclusion. One day I got very bad news from my doctor, and came home to discover that people I'd never met had banded together to make it possible for Sharon and me to attend this two day festival featuring my favorite artist, band, and music. It was an astonishing example of the kindness of strangers, and completely unexpected. It turned a very bad time in our lives into one of great meaning, blessing, friendship and love.

The music of Neal Morse speaks most deeply to my soul at this time in my life. It's the only rock music I know that's this musically satisfying and spiritually uplifting all at the same time. Nothing else comes close for me. That being the case, my greatest wish, my one bucket list item, was to come to this two night festival of my favorite music performed by my favorite band. Especially when they were performing my all-time favorite album, The Similitude Of A Dream, in its entirety for the last time.

It was also the DVD taping. How incredibly special for me to be there for that. It's like someone told me I have a front row seat for the final performance and DVD taping of Dark Side Of The Moon. But Roger Waters, for all his brilliance, never wrote an uplifting lyric in his life. Neal Morse's lyrics take me straight to Heaven, and his music stands toe to toe with any of the greats in rock history. To paraphrase Neal's dear friend, drummer, and collaborator, Mike Portnoy, if I had to pick one artist for my desert island music collection, between the Beatles catalog and the Neal Morse catalog, it would be a tough call.

That being the case, you can imagine the thrill it's been to be here. Everything at Morsefest has been far beyond our expectations. From the moment we arrived at the hotel and met our new friends Mark, Patricia, Paul and Angus, we've been humbled by their kindness and generosity. They've allowed us to tag along with their party, and trust me, their party is the one you want to be part of.

We arrived at New Life Fellowship in Cross Plains, Tennessee Friday afternoon and received special VIP passes for the day. The staff at Morsefest is kind, gracious and helpful. The love of God shines through in their faces. They have gone the extra mile to make this time special for us, and we will always be grateful.

Because of the party that we were with, and because of the kindness of the Morsefest staff, we were given front row seats for both night's concerts. Dinner is served at the church, which contributes to the feeling of community here. Our group had its own table at dinner, which made it easy for people to find us. And many came by to greet us. Paul and I seemed to garner most of the attention.

Wherever I go here, I am recognized. At the church where Morsefest is held, at our hotel and in restaurants, people approach us and express how happy they are that we were able to be here. This was evident from the very first.

When we arrived at the church the first day and received our VIP passes, the first activity was a game called "Neal Of Fortune." Contestants were called up by number to play. In each group, someone I knew from Facebook was introduced to me. It was a weekend of putting faces with names. When there was one group left, my number was called. As soon as I stood, a murmur went through the crowd. When I walked onstage, everyone there seemed to know me. I didn't even have to give my name. It was my first indication of the incredible amount of love and support I would receive here.

Since then, I've hardly been able to walk down a hallway without meeting someone who wants to say some encouraging words to me. I can't describe how that feels. Each time someone shows such love to me, my eyes fill with tears. The tears come very easily this weekend. It's no coincidence that music like this by a man like this draws fans like this.

At the meet and greet, I was able to have meaningful conversations with each member of the band. They all seemed to know my story. Some told me they are praying for me. For me, this is a little like The Beatles telling me they are praying for me. When my wife and I talked with Neal, we gave him two pints of my gourmet chocolate ice cream, which I had brought on the plane from Denver packed in dry ice. I don't know if he's sharing it or not. That's up to him.

After dinner, where more love and support were showered upon us, our party was ushered in and escorted down to the front row on one side of the stage. The picture at the top of this post was taken from that vantage point. We had a perfect view. We couldn't believe our good fortune. You see, we were not able to buy VIP passes. By the time our tickets were purchased, VIP was no longer available. We certainly hadn't paid for front row seats. All of this was a gift. The kindness of strangers.

The first night's concert was a performance of Neal's autobiographical concept album Testimony 2, along with some "rare epics." I won't do a detailed concert review here. The internet would run out of space. I'll just say that, like all Neal Morse Band concerts, it was musically thrilling, spiritually uplifting, and God-glorifying. And loud. It was loud. And I loved it. As I always say, if it's too loud, you're too old.

I first saw Neal Morse live in 2010 when he first came to Denver on the Testimony 2 tour. So it was fitting that T2 was one of the albums I saw them perform at my last Neal Morse Band concert. A beautiful way to begin and end my six times seeing Neal Morse live. My favorite moment on this album, and my favorite lyric in the entire Neal Morse catalog, is from a song called, "It's For You." At the end of the chorus, God is speaking. He says:

Take my hand
Trade everything you are
For everything I AM.

Trade everything we are for everything God is. What a trade! And one I can relate to easily. Everything I was is gone. I've traded everything I am in exchange for everything He is. And He is so much more than I ever could have been.

When we reached that moment in the concert, I was undone. I was torn between rocking out on my favorite song on the album and breaking down in sobs. I think I did both.

Progressive rock concerts are long. My wife and I were running on fumes for the entire show. While were were thrilled to have front row seats, we discovered that when you're right in front of the band, you have a responsibility to rock out. And rock out we did. But there are long stretches where everyone is seated for mellower sections. During those times, I can't tell you how many times I thought, "Don't yawn! Neal's looking at you!"

I don't know how those guys put out so much energy for two straight nights. The first concert began at 7:30 PM and didn't end till after 11:30 PM. Our day at the church had begun at 2:30 PM, so when we got in our rental car at about midnight, we were beyond exhausted. But we were feeling very blessed, and still pinching ourselves that we're actually here.

I'll need to talk about Saturday and Sunday at Morsefest in my next post. This one is long enough. Aren't they all? But I want to close with a story about the Inner Circle concert on Saturday morning. Inner Circle is a group of Neal Morse super fans who pay a monthly fee to get all kinds of inside material from Neal every month. We've never been Inner Circle, but somehow, we were included in this concert as well. I think that's what they call grace. We don't deserve it, but we're included anyway. Undeserved favor. The kindness of strangers.

At the concert, which was basically a solo acoustic set, Neal was introducing a song called, "If I Had A Year To Live." In his introduction, Neal asked what he would do if he only had six months to live. Though the song talks about time increments of a year, a month, a week, and a day, the first number out of Neal's mouth was six months. That's about the number I'm looking at, realistically. Barring a miracle, that is. When Neal said that, it hit me hard. And I immediately thought, "I'm doing it. I'm doing it right now." I still am.

The rest of Saturday is a whole other story. I was interviewed for the DVD. We were placed front and center so that Paul and I would be in the camera shot. And so much more.

It's Sunday morning. The worship service is at noon. They will lay hands on us and pray for us. I expect it to be transformative. I know I won't be able to hold back the tears.

For the uninitiated, the title of this post is a reference to an album title in Neal's back catalog. I thought it very fitting for this post. But there's one problem with it. I've discovered that there are no strangers here. There is only family. A #progfamily. It's a family that's growing all the time. We are humbled and eternally grateful to be part of it. #waroncancer #bearingwitness #morsefest2017

Monday, August 28, 2017

The Least Depressed Terminally Ill Person You Know


First of all, I want to thank my friend Alan Cox for the above image. He gave it to me months ago to use in this blog, but this is the first post I thought was a good fit for it. Thanks for all your kindness to me, Alan.

Someone told me they thought they saw signs of depression in my last post. I assured her that I've been in therapy for sixteen months, and the subject of depression has never come up. I promised her that I'm the least depressed terminally ill person she knows. When I told my therapist this, she laughed out loud and agreed with me. I should be depressed, but I'm not. I'm having too much fun. I have too much purpose in my life to be depressed.

Now that our big anniversary celebration is past, my wife and I have settled into a comfortable retirement routine. We walk our dog. We go to our favorite spot by a nearby reservoir. We go out to eat. We hang out on our patio. We go to church. We see our friends. Serious topics of conversation come up frequently, and when they do, we talk about them honestly and realistically. But most of the time, we're just doing our thing like we've always done.

This Thursday, the two of us will travel to Nashville, Tennessee to attend a two day festival with my favorite rock star, Neal Morse, and his band, The Neal Morse Band. I told you the story of how this incredible blessing fell into our laps in my post The Conclusion. If we get to meet the guys in the band face to face again, this time, most of them will know who I am! We'll meet new friends from across the world, and thank those responsible for making this happen for us. At the worship service on Sunday, the whole crowd will pray for us and with us. Yes, this rock festival ends with a worship service! Only at Morsefest. I can't think of another musical artist whose fans would do something like this for one of their own. What a blessing.

This was my only bucket list item. If someone had asked what one thing I wanted to do before I die, I'd have said go to Morsefest. And God granted it, just like that. Depressed? On the contrary, I'm walking on air. Of course, I will blog about the entire thing. I plan to post about it three times, once for each day. This is a major event in the last season of my life. I will not fail to bear witness to it.

It's also an unexpected out of town trip, all expenses paid, for the two of us. It's just the kind of thing retired couples do. They travel, don't they? But we don't have the money for that kind of retirement. So God provided again, not by meeting a need, but by granting a wish. He is so good.

I said at the top that I have too much purpose in my life to be depressed. I am doing something right now that is an immeasurable blessing to me because of the purpose it gives me. It's kept me involved in things I thought I was done with, and given me great joy. It's crazy, but I'm in a band again. Never thought I'd be in another band. Except for my friend Todd and me, the band consists of teenagers, ages 16 to 19. Definitely never thought that would happen. If you're wondering if it looks weird having two old guys in a teenage band, the answer is yes.

That's not the best part, though. I'm teaching them songwriting. We began work on our first original song last week, and I hope to finish it this week. The day after we started on it, I got inspired and began working out the arrangement and song form in my head. Our lead singer, who I call my protege, is working on lyrics and fleshing out the song as we speak. The lyrical concept for the song is hers. I'm very excited to hear the finished song.

I never thought I'd do that again; work on a new song idea I'm really excited about. It's a feeling that's impossible to describe. You only know it if you've experienced it. But even that isn't the best part for me. It's fun and exciting, but not where my sense of purpose is. I find purpose in passing on the knowledge I've gained over the years to these kids. Having young people who want to learn from me gives me purpose. Feeling like I can pass something on to the next generation gives me purpose.

This is especially true of my protege. She absorbs everything I say like a sponge and puts it in into practice. I can't tell you what it means to have someone as young, talented, and driven as she is who wants to learn as much as she can from me, and wants to make me proud. I never thought I'd reach this stage of my life and have such an eager pupil. Especially one who will far surpass me, as I believe she will. I hope you have someone like that who wants to learn from you when you're at this stage of life. I hope you have this much purpose.

I find purpose in writing, as you all know. Writing music, lyrics, and this blog. This blog most of all. I've begun the work of turning it into a book, and I can feel the clock ticking. If my doctor is right, I'd better get this book done, and fast. This is a job that I don't want anyone else to do. I don't want someone else to decide what parts of this blog make it into the book, and what material should be added. I know what I want it to be.

It's my intention to keep writing for as long as possible. Ideally, I'd like to write something on my last day and have it posted to this blog. Maybe just a paragraph. Maybe just a sentence. But something. By then, hopefully, the rest of the book will be ready to go in its template, the artwork will be done, and all my wife has to do is plug in the last few posts and publish. I've asked my therapist to write the afterword. I'll never see it published or hold a copy of the book in my hands, but only because I must bear witness right until the end if I can. It's my purpose.

This means I may have to refuse pain medication in order to remain lucid. It's more important to me to be able to write and interact with my loved ones who visit me than it is to feel no pain. I'd rather know that someone is in the room with me and be able to express myself than be comfortable. It's my sincere hope that the cannabis oil I'm using will help with that. I am able to remain lucid and write with that in my system. I doubt that's true of morphine.

This is a recent decision. It was informed by a visit to a friend's hospice bedside. He never knew I was there. I don't want that to happen to me, no matter how much pain I'm in.

Of course, I reserve the right to change my mind about that. It's pretty easy for me to say that now. But I do mean it. Anyone who knows me since I got cancer knows that what drives me is writing and being with my loved ones. If I can't do either of those, I have no purpose.

And while we're on cheerful topics, I've also begun working on my memorial service. I have the slide show almost finished. I'm doing it because I don't want anyone else to decide what pictures of me to show! Not that I'm a control freak or anything... I know who I want to speak and who I want to sing. There will be a hilarious career retrospective video showing many of the parodies I've done over the years. I made my living in comedy, so my service will be funny.

I have three people I'd like to sing. I know what songs I want them to sing. I've already asked one person. She agreed. She'll sing the first song I ever heard her sing. The song that led to our friendship. I'll talk to the others soon. They are also singers of great importance to me, and all three will move you with the songs they sing. I just hope I can get all three.

I won't be there, obviously, but I will make an appearance in a video statement. Just a brief message to those in attendance. I have the last line of my speech already written. "I'll close by saying this. Men, get your PSA checked. Let me put it this way. If you don't wanna be the guy in the jar, get your PSA checked." Maybe that will get their attention.

I'm sure reading about how I'm thinking about pain management in my final days and planning my memorial service makes you sad, and I'm sorry about that. But it doesn't make me sad at all. All of these things are part of my purpose; to mentor and bear witness, to get my ducks in a row, to love and be loved. My days are full and so is my heart.

I will admit that I still dread taking Zytiga and its accompanying steroid. I had a random flash of anger last Friday that could have been from prednisone or hormones, or just heartsickness because I'm not following my heart in regard to my meds. But I made a promise, and I'm still not ready to call Hospice. So I'm back to taking 5-HTP to help keep me calm. That way, I can get through the rest of the time I'll spend on this stuff.

But none of that decreases my joy or sense of purpose. I may be in a bad mood sometimes because I hate my pills, but if that's the worst thing I'm going through right now, I am truly blessed. Many in my shoes are much worse off than I am. I won't allow chemically-induced mood swings to spoil our retirement, or my joy in mentoring and telling my story.

Sometimes I write posts that come off as very negative. I'm struggling over something, so I work it out in my head by writing. And there's no getting around it, this blog is getting very serious. We're in serious times. But I am not depressed, because I have a sense of purpose. My sense of purpose makes me the least depressed terminally ill person you know. #waroncancer #bearingwitness

Thursday, August 24, 2017

Not Ready For Hospice Yet


Before I get to my topic, here is the news of the day. I had an MRI of my left shoulder done yesterday morning to determine if cancer or tendonitis are causing the pain I've been having there for about a year. You may remember that this was the same area where metastasis was thought to be found when I was first diagnosed. An MRI of that shoulder in early 2016 showed this impressive lesion:


But later, after much examination and consultation, it was decided that what was found was probably not cancer. Then, about a year ago, that shoulder started to hurt. A lot. So I wanted to see if it could be treated. If it's tendonitis, I can get a steroid shot for it. But there was a real chance it was cancer, given how far the cancer has spread in my bones. So another MRI was ordered, and I got the results back today. It's good news.

The MRI showed no cancer in the area, and no ligament tears or anything that would require surgery. I can go ahead and get a steroid shot for the pain. I have that appointment on Monday morning. So that's a relief. Literally.

Here is the other news I have to tell you. I've decided that, despite what my heart tells me, I will continue taking Zytiga and prednisone for at least three more weeks, until my next PSA test. There were two deciding factors. First, someone very important wants me to. Someone who has the only deciding vote besides me. I'm not the only one who is affected by this, and I've promised I'll do whatever she wants me to do to stay here for her for as long as possible. She doesn't want me to do chemo, but she does want me to do this. She'll support whatever I decide, but I made her a promise shortly after I was diagnosed. I intend to keep that promise.

The other reason is there are no more treatments I will accept after this one. If I stop taking Zytiga, I will no longer be treating my disease, other than one more Lupron shot, which I'll get in September. The last time I saw my oncologist, I asked him about what happens when I decide to stop treatment. He said the day I decide that, I need to set up an account with Hospice right away. If I had decided not to take my pills this morning, I would have had to make that call today. I'm not ready to call Hospice.

Hospice does not necessarily mean you're on your death bed. That's the mental image we get, but hospice is much more than that. Merriam-Webster defines hospice as "a program designed to provide palliative care and emotional support to the terminally ill in a home or homelike setting so that quality of life is maintained and family members may be active participants in care; also :  a facility that provides such a program."

That's what I will need. I'm terminally ill, I want to stay at home, and I want my quality of life maintained for as long as possible. That's what hospice will give me when I need it.

There's a difference between palliative care and hospice care. I've been in palliative care from the beginning of this. At no point was a cure expected or offered. Each medical treatment was merely a delaying tactic. But my disease was being treated. Not in a curative way, but it's been treated nonetheless.

Hospice care focuses on comfort, pain management, and emotional support. They stop treating your disease, and just try to keep you comfortable. It can be done at home, and I very much hope to stay in my home right till the end. But for now, I still have no symptoms. No pain at all except for my stupid left shoulder.

So why do I need an account with Hospice? I assume it's because it takes time for them to line up the proper care for you, and in my case, things could happen very quickly once I stop treatment. So I need to set things up ahead of time so it's there when I need it. But that's a hard call to make when you still feel fine.

If my PSA goes down in September, I'll keep taking those accursed Zytiga pills until they stop working. I expect that if it works at all, it won't work for long. A few months is all. At that point, I'll have to call Hospice. If my PSA rises again in three weeks, it will be time to make that call then. But not today. I'm not ready for Hospice yet. But I will have to be ready soon. #waroncancer #bearingwitness

Tuesday, August 22, 2017

Ignoring My Heart


This was almost an eclipse post. I thought seriously about writing a blog post titled The Path Of Totality. I love that phrase. The idea was, the shadow of cancer is passing over me, and it will completely engulf me because I'm in The Path Of Totality. But even when it does, my corona will burn all the brighter. Or some poetic crap like that. It would have been very beautiful, but instead, you get this.

Since I was diagnosed two years ago, I have done two things without fail; Follow my doctor's recommendations and follow my heart. Until now, there has been no conflict between the two. But now there is. For the first time, I'm neither following my doctor's recommendation nor following my heart. And I don't like it one bit.

I've always been big on following my heart. I wrote a whole post about it a while back. But it's harder to do that now than it used to be, now that we're down to the last treatment.

Long-time readers know well how I complained about Lupron, especially for the six months after my first shot. Much of that was truly hellish, for me and those closest to me. But my second shot wasn't so traumatic because of one very talented nurse, and my body got used to Lupron. And though I've dreaded it in many ways, I've never felt my heart tell me not to get another Lupron shot.

When Lupron stopped controlling my cancer, we added Xtandi, another hormone treatment. I often described those pills here as "horse pills." They were big, and for some, I'm sure they are hard to swallow. But I had no problem taking Xtandi. I swallowed them easily, and it never caused me any side effects. I could take it with or without food. It was very low maintenance. My heart never raised any objection about that treatment, either. But it stopped working too.

So now I'm on Zytiga, another hormone treatment. The last one. I have to take this drug on an empty stomach. I also have to take Prednisone along with it, only that has to be taken with food, twice a day. So there's this whole schedule that goes with Zytiga. I don't eat on a normal schedule, which makes it hard to remember to take the Prednisone.

I hate Zytiga. I hate taking it. I hate the way it tastes, and the aftertaste it leaves. I hate the way it makes me feel, though my side effects are mild. I hate the very idea of it. I hate the fact that I have to take it on an empty stomach, then feel nauseous for an hour afterward until I can eat something. And I swear, it makes me feel stupid. During that first hour after taking those pills on an empty stomach, it's like my synapses stop firing like they're supposed to. I've instructed my wife to watch me closely and make sure I seem to have all of my mental faculties at all times. Of course, many would say I've never had my mental faculties, but that's not relevant to our discussion.

There's also the fact that I'm not allowed to touch the pills. I'm supposed to swallow them, but I can't touch them. Moms, imagine telling your kids, "Don't touch that, but it's okay to put it in your mouth." That's what I'm taking every morning. I have to take the pills by shaking them into the bottle cap, then tossing them into my mouth from there. Maybe it's something to do with the oils in our skin making the pills less effective. But it creeps me out. And let's not forget the warning to pregnant women not to touch the pills without gloves. A friend asked me why that is, and I said it's because it's poison. Maybe it's because it's hormone treatment, and it could harm a baby's development by messing up a pregnant woman's hormones. Or maybe it's just poison.

I never once felt this way about Xtandi. I would happily have stayed on that for years. But Zytiga makes my skin crawl for reasons I can't explain. If you read my post Throwing Stuff At The Wall, you know that I felt a strong resistance to starting it. Now, after having been on it for a week and a half or so, I don't feel any better about it.

So why do I keep taking it? For the possibility of a few more months without symptoms. But that's all it is, a possibility. No one can guarantee anything. Both oncologists I consulted about it are pessimistic about how much it will help, following right on the heels of Xtandi. But it's all they can offer me except chemo and additional Lupron shots.

I'll get one more shot, but no chemo. My heart is clear on that. My thought going into this was I'd take Zytiga for as long as it drove my PSA down. I get my next labs done in mid-September. If my PSA is going back down after that test, we'll know it's effective, and I'll feel obligated to keep taking it, even though it makes my heart sick to do it.

But I do feel obligated. Obligated to my loved ones, and to many who read this blog who would feel like I was "giving up" - a term I despise - if I decided to follow my heart in this matter.

I've never gone wrong following my heart, but I've met disaster many times by ignoring it. I honestly don't know if I can keep taking Zytiga if I keep feeling this way about it. It feels like my heart or my body are trying to tell me something. It's not a God thing. It's just an aversion I can't explain.

I've felt this way since before I took my first Zytiga pill, and I still feel the same way. Following my doctor's advice is no longer an option, since he wants me to do chemo. Can I ignore both my doctor and my heart? I don't think I can.

Of course, if you read this blog with any regularity, you know that I don't believe medication is what's keeping me upright and symptom free. It's clear to me that God is doing that, not treatment. He's giving me this time, and I'm trying to use it the best way I know how. If he has a job for me to do, (or two or three) I believe he'll enable me to do those things. He determines the length of my days. And no matter what anyone does, those days will be numbered in months, not years. Because I am in the path of totality. As long as I'm on this path, I have to listen to my heart.

When Heather calls from the pharmacy to ask if she should send the next bottle, I honestly don't know what I'll tell her. There was never any hesitation when she asked about sending Xtandi. Now every time she calls it will be an existential crisis.

From my post Following My Heart, written April 6th, 2016:

Have you ever been there? Everyone thinks you should go in one direction, but you strongly feel you should go the less safe route, for reasons you can't explain? If you've ever followed your heart when many others were shaking their head, you know what I mean. But that's how I've lived my life, and I can't stop now.

This approach will also apply to my cancer treatment. I'll listen to all of the smart people, and do my research, but in the end, I must follow my heart. Even if it means going home earlier than you might want. Nobody likes it when their friends leave the party, but we all have to go home sometime.


That pretty much sums it up. If I decide I want to stop taking Zytiga, I'll talk to my doctor and nurse first. I won't just stop. I'll also keep you informed about everything, like I always do. And I promise, next time I'll have something more inspiring. Some poetic crap. Right now, all I know is that when I think about taking either one of the pills I'm taking, I want to shudder. And when I think about stopping, I'm filled with relief. The question is, am I prepared to keep feeling this way for the possibility of a few more months? Do I even believe it will give me that? Is it time to do what I've wanted to do from the beginning of this, which is just trust God? I know that would make my heart happy. But it would make a lot of people sad. And mad.

I'm sure I'll get lots of opinions about this. Nothing is set in stone, but my intention is to continue taking Zytiga, despite my reservations, at least until my next PSA test. My doctor warns that it might take a couple of months to see an effect, but I'm not inclined to give this stuff a two month trial. It gets one month to prove to me that it's worth taking. Unless my heart just won't leave me alone until I stop, which it has been known to do. If that happens, I have to stop ignoring my heart. #waroncancer #bearingwitness

Thursday, August 17, 2017

The Irony Of It All


I was having coffee with a good friend on Monday. He's a guy I've been working with musically for a little over a year, and we've become very close during that time. I've known him for years, but only worked with him since I got cancer. Our friendship has really just started, and in that short time, we've done a lot. We've made a real difference in some young lives. And had a whole lot of fun in the process.

My friend was talking about the contribution I've made since I joined his endeavor. He realizes that if it weren't for cancer, we never would have worked together and become the friends we've become. But because of cancer, our friendship will be short-lived. Or as he put it, "I never would have had you if it weren't for cancer, but because of cancer, I'm gonna lose you."

He's struggling with the irony of it all. There is a whole new category of people in my life that fit that description now. People I would never have met if not for cancer, or would never have gotten to know well. People who I could not imagine life without now. Most of them only know me because of cancer. There is an enormous benefit to our relationship, but with one big drawback. Sooner rather than later, they will lose me, when we've only just begun.

I think of my friend's wife, who I've only become friends with since I was diagnosed, and largely because of that. Recently, she was lamenting the timing of my illness. I asked when a good time would be, and she didn't have an answer. But I'm sure she meant when I'm 90. When our friendship won't have just started.

I think of my therapist, who I can't imagine not knowing. I'll be her first patient to die on her. We would never have met, of course, if it weren't for cancer. There's my nurse, Melanie too. It stands to reason I wouldn't have met her unless I had cancer, but she is a towering figure in my life now. As an oncology nurse, she has a lot of experience losing patients. But I don't think this one will be easy to lose.

I think of the friends I've made online, too numerous to mention. You're a huge part of my support system, yet we never would have interacted if not for cancer. It's horrible, but it brought us together. And each time one of us falls, we all feel the loss.

I think of my protege, who I've talked about before in this blog, and posted videos of on Facebook. I've never called her that here before, but that's what she is to me. We really have just gotten started. I believe I'm helping her get to the next level, though she doesn't need that much help. But I won't be able to help her for long. It's a blessing and a curse. A cruel irony.

My protege is only 17, so I talk with her mom a lot. We have become good friends. She put it this way. She said it's feeling happiness and devastation at the same time. I can see some of you nodding your heads. That's exactly what it is. Happiness and devastation at the same time.

I must be really dense. I've only looked at this from my perspective. On my end, it's all blessing. I get the blessing of all these wonderful people in my life and many more during my last couple of years on earth. I get to work on exciting things and build meaningful relationships, then go on to even greater blessing. But for them, their time of blessing is exchanged for a time of sorrow. Their happiness traded for devastation.

Why did I never realize this? Every person I've invested in since my diagnosis, while we treasure the time we have now, will pay a heavy price for that time down the road. The very thing that brought us together will be the thing that separates us. And yet, they stay with me anyway. Knowing their hearts will be broken. Not one shies away.

Obviously, I have many close friends who have known me for years, some for decades. And of course, my wife and family are closer to me than anyone. Their loss will be much greater than those I speak of in this post. I don't mean to minimize our relationship at all. You are dear to me. I depend on you. But we've had many years together.  The people I'm talking about in this post can't say that. The ones who would never have had me if not for cancer, but who will now lose me because of it, to quote my friend.

To all of these precious people I say this. To me, our relationship is pure blessing. I'm sorry it's a mixture for you. Thank you for sticking with me even though you know it will be painful. I love you. #waroncancer #bearingwitness

Saturday, August 12, 2017

Throwing Stuff At The Wall


My new medication came yesterday. It's called Zytiga. It comes with a side of Prednisone, and it comes in this attractive packaging. You know something's seriously wrong when you get deliveries like this.

What it says on the bag is wrong. Zytiga is not chemo. It's hormone treatment. But apparently CVS Pharmacy thinks all cancer medication is chemo. Or maybe they just don't have hormone therapy bags. Xtandi came in the same bags, and it isn't chemo either.

I've been expecting these pills. I took my first pills today, and I'll keep taking them for as long as they work. There was much more in the box than the two bottles of pills pictured. There were two pill boxes marked with days of the week. There was a timer so you can time when to take your pills. There was a glossy brochure filled with pictures of attractive middle-aged people who are apparently dying of cancer. Actually, I think they were models. I'm pretty sure I've seen the same people in Viagra ads.

What makes this one different than the treatments that came before it is that, for the first time since I began treatment for my cancer, I am not doing doing what my oncologist recommends. He wants me to do chemo. He doesn't think Zytiga will be very effective for me, or at least not for very long. But he can't guarantee good or long-lasting results from chemo, either. At this point, we're just throwing stuff at the wall to see if anything sticks. Nothing has so far, but we keep throwing.

I think that expression was originally about pasta. Has anyone actually thrown pasta at the wall to see if it stuck? If it sticks, it's done, right? Well, my pasta has apparently been al dente for two years.

Starting this medication did not come without some drama. Very little does in my life these days. When the package was delivered yesterday, I pulled all of this stuff out of the box it came in and looked it over. The more I did, the less comfortable I became. When I looked at the bottle of Zytiga in the chemo bag and contemplated opening it and taking four of the pills inside first thing this morning, I was filled with a feeling of revulsion. A sick feeling in the pit of my stomach. I felt an unexplainable aversion to taking these pills. On the one hand, it felt like my brain saying yes but my heart saying no. That happens a lot. On the other, it felt like I was just tired of taking pills. I wanted to be done with that. To be honest, I still do.

I told my wife about how I was feeling. She made all of the rational points in favor of taking Zytiga. But it wasn't about rationality. It was just a feeling I couldn't explain. She's lived with me long enough to know how big I am on following my heart. Ultimately, I have to do what I feel is right, no matter how it looks.

As I thought about it last night, I decided to make a list of pros and cons for taking Zytiga. Here's what I came up with.

Pros:
1. Little to no expected side effects.
2. Expected to add a few months to the six I can expect before I start to experience symptoms.
3. It's 100% covered.
4. Prednisone may help my sore shoulder.
5. Melanie thinks I should.

Cons:
1. My heart tells me not to.

Not much of a comparison, when you think about it that way. But to tell you the truth - which I always do - if I had felt this morning like I felt last night, I wouldn't have taken my first dose of Zytiga this morning. I would have waited until I felt differently, if I ever did. But the aversion passed with the dawn, and I took my pills.

But this is it. Unless a clinical trial is discovered for me in the next six months, this will be the last conventional treatment I'll take for my cancer. These pills and one more Lupron shot. Maybe my aversion episode was a case of senioritis. I can see graduation coming, and I'm tired of being a student. It would be one thing if this treatment was expected to cure me, or significantly extend my life, but no treatment is expected to do that.

Even so, I am not sad or depressed. It's a gorgeous day here in Denver, Colorado. My wife and I will go to lunch and see a movie this afternoon. We're looking forward to spending time with close friends next week, and so excited about Morsefest at the end of this month we can hardly stand ourselves. I feel fine. I just get tired easily is all.

I am thankful for every day with no symptoms. Each one is a gift from God. He gives me these good days, not treatment. When I'm done with this treatment and keep having good days that no one can explain, he will get all of the credit. I just have one more strand of pasta to throw at the wall. If this one doesn't stick, it will be time for dessert. #waroncancer #bearingwitness

Tuesday, August 8, 2017

The Conclusion


After meeting with two oncologists in the last two days, we've learned a lot, and come to some conclusions. You may not like our conclusions, but this is where we are.

Yesterday, I met with an oncologist - not my usual one, but one at the local university hospital - to inquire about clinical trials I might be a candidate for. There was a wealth of information, but the short answer is that there aren't any trials at that facility that are right for me at this time. That could change in six months, but right now, all the trials they have for prostate cancer either exclude prior use of Xtandi, which I just finished taking a month ago, or they involve chemo, which I won't do.

One interesting thing this oncologist said was that she thought I've probably had cancer for about ten years. I just wasn't diagnosed until 2015. My PSA rose incrementally, but steadily, every year since 2001, when it was 4.0 and I was 46. They didn't test men in their 40's for prostate cancer in those days. Some doctors still don't. It wasn't until that two year period between 2013 and 2015 that the new, more aggressive version made its appearance, my PSA spiked, and my cancer became unstoppable. If I'd been diagnosed prior to 2013, and had surgery then, I'd probably be fine now, with expectation of a normal life span. But I had no insurance and no doctor then. Woulda, coulda, shoulda.

She reminded me of all the factors I've had stacked against me; late diagnosis of an already advanced and very aggressive cancer, my cancer becoming resistant to hormone treatment so early, metastasis advancing so rapidly, and so on. Considering all of these factors, I've done incredibly well. It's been two years since my diagnosis, and I still have no symptoms. But I will, and soon. I have no illusions about that.

Her recommendations were that I start taking Zytiga, which is another hormone treatment like Lupron and Xtandi, and possibly combine it with Radium 223 treatment, also known as Zofigo. Sounds like a cheesy magic act. "Ladies and gentlemen, the Amazing Zofigo!" That's the one that gives you radioactive urine. Lovely. But she thinks I should do chemo too.

This morning, I met my oncologist to discuss all of this. He really, really wants me to do chemo. Taxotere. Nasty stuff. But unlike yesterday's oncologist, who said she thought I'd get about four months from chemo, my oncologist thinks I'd get more time than that. What quality of time I'd get, he wouldn't say. He also admitted that my cancer seems especially tough and resilient. Nothing much seems to phase it for very long. So it is possible, even likely, that I'd go through that and only get good results for a short time. But he still thinks it's the best treatment for me.

He's less enthusiastic about Zytiga. He's pessimistic about how long that would be effective for me. But it's the only treatment he has available that wouldn't have side effects that would keep me from doing what I love.

At the same time, he's looking into the Radium 223 treatment for me as well. It's a radioactive isotope that they give you in an IV. It's supposed to specifically attack cancer in bones. Other than the fact that it gives you radioactive pee so you have to use a different toilet than everyone else in the world, the main problem with that treatment is it doesn't lower PSA. So there's no way to tell if it's working. I'm still trying to keep an open mind about that one, but I don't like the sound of it.

I know you have to take Zytiga on an empty stomach, and that was a concern for me because of my issues with losing weight. I need to try to avoid having an empty stomach. But my beloved nurse Melanie assured me that if I take it first thing in the morning, and don't eat breakfast for an hour after, it should be no problem. She thinks I should do this. That's good enough for me.

Toward the end of our conversation today, I asked my doctor a couple of questions. First, I wanted a number from him. Not a life expectancy number, but an onset of symptoms number. How much longer can I expect to feel good? He said six months after treatment stops working, he'd expect me to start showing symptoms. Treatment has already stopped working. He doesn't expect what we're starting now to add much time to that number.

Lupron alone worked for ten months. Lupron plus Xtandi worked for six. There's always a law of diminishing returns with these things, so let's say Lupron plus Zytiga works for four months. That would give me four additional months, so ten months before symptoms start to set in. But as fast-moving as this disease is, it could be less time than that.

What would the first symptoms be? Most likely, uncontrollable weight loss, hair loss, and weakness. Gaunt Cancer Guy will be in the house. Then pain.

I'm not the first guy to resist chemo when I have no symptoms. Many react that way. Why would I make myself feel bad when I feel good? Especially when feeling bad won't cure me or significantly extend my life? Often, guys who have this attitude change their minds and start with chemo once symptoms start. But I don't believe I'll do that. I told my oncologist that when symptoms start in earnest, I will stop treating my cancer and go with pain management alone.

Many guys, when they decide to stop treating their cancer, do so because they want to put cancer out of their minds and just live life as long as they can. I congratulate my brothers who are able to do this, but that's not my calling. My calling is to bear witness to what it's like to die of this disease. It's to bear witness to God's goodness to me during this time. To bear witness to what love can do.

I also asked him if he will still be my oncologist when I decide to stop treatment. He said yes, but his role will be secondary at that point. I'll be in Hospice care.

While this news was in the works, God was working behind the scenes. For weeks, he nudged a man I've never met to bless us in the best way possible, at the exact right time.

I've talked in this blog many times about my favorite musician, Neal Morse. His music has been an indescribable blessing to me since my diagnosis. Neal and his band hold an annual festival called Morsefest at his church in the Nashville, Tennessee area. It's a whole weekend of concerts and events, all of it Neal Morse music. It's my ultimate bucket list item.

Last week, a young woman asked a group of Neal Morse fans if she should go to Morsefest this year or save her money. I commented that she should go if she can, and that I'd give anything to be able to go. I said I felt like this year is probably my last chance. Was that an offhand comment or a cry for help? I'll never tell. But I made that comment days before I got the news that I should expect symptoms in a matter of months. It really does seem like this year is my last chance.

So God impressed on a friend that my wife and I should be at Morsefest this year. We've never met personally, only in the Neal Morse Forum on Facebook. He reads this blog. He messaged me recently about this, and he and the moderators of that forum set up a GoFundMe campaign to raise money for us to go. To pay for our tickets, airfare, car and hotel. Today, the first day of the campaign, we exceeded our goal. We are going to Morsefest.

So instead of crying about the news we got from the doctor today, we've been crying tears of joy over the kindness of friends and the goodness of God. God orchestrated this so we'd get this amazing news the same day we got such bad news. It was Providence. And if God wants us there so much, it's because he's going to do something amazing. Mark my words.

I may not have that many more days in my life, but I have life in my days. I still have things I feel called to do, and things I'm passionate about. I'll do all of them for as long as I can, and keep telling my story for as long as God grants me breath. He's keeping me upright for a reason. He won't let me fall until he's ready to catch me. #waroncancer #bearingwitness

Friday, August 4, 2017

The Result


My new PSA score came in this morning. The experiment was not a success. A month ago, my PSA was 1.41, which was up from .98 two weeks prior, and .35 a month before that. After one month of being off Xtandi, my PSA is 3.72. My cancer continues to grow. It doesn't look like there's anything that can stop it now.

For the uninitiated, the "experiment" I speak of was trying 1,000 milligrams per day of an ultra-pure version of cannabis oil as my only treatment, other than the Lupron that's still in my system from my last shot three months ago. My oncologist agreed to this experiment, ordering a baseline PSA test to begin. But the experiment was flawed due to the fact that I couldn't get the oil in a timely enough manner to actually dose at the level I needed to every day. I missed about a week of doses during the last month.

But honestly, I didn't really expect this treatment alone to keep my cancer under control, much less kill it. I just wanted to try and see if it made a difference. It appears that the only difference it makes is help with pain and sleep, at least for me. As far as I'm concerned, that's reason enough to do it right there. So I'll keep taking it, and keep getting tested. Maybe, over time, it will show some measurable benefit.

Cannabis oil helps many people, and has cured many of cancer and other diseases. But my cancer seems to shrug it off like it has everything else we've thrown at it. I have no reason to believe that any future treatment will fare any better against it.

We'll see if there are any worthy contenders to go up against this juggernaut when I have a consultation about potential clinical trials at the local university hospital on Monday. As I've said in past posts, I'll be very judicious about choosing any trial I might be a candidate for. I don't want to do anything with adverse side effects, or where I have a 50/50 chance of being in the "old treatment" group or the placebo group. There may not be a trial that I'm a candidate for anyway. There wasn't last time my oncologist checked, which he does regularly.

It may seem to you like I have a cavalier attitude about this. You may be thinking that I should be willing to take more risks given my situation. I'm sure that's what many of you would do. But because I still feel good, I'm reluctant to do any treatment that will make me feel bad. I want to keep doing the things that give me joy for as long as I can.

Here's the bottom line. I am incurable. My disease is terminal and very aggressive. At some point, I will lose my quality of life, either from treatment or cancer. As long as I have no symptoms, why would I want to make myself feel terrible and put myself on the sidelines sooner than I have to? It would be one thing if there was a good possibility of a cure, or even significant extension of life. But there isn't. A few additional months is all any treatment out there can promise me. That I know of, anyway.

If there's a clinical trial that has minimal side effects and still allows me to do the things that are important to me, I'll probably do it. But I have little or no confidence that this dragon can be slain by any device of modern medicine, or that it can even be kept at bay for long.

Cancer is a terrible thing, and the particular flavor I got seems nastier than most. But at the same time, I'll admit I'm a little in awe of this organism in my body that seems invulnerable and unstoppable. It's like the tide. You can't hold it back. All you can do is try to get to high ground. That's what I seem to be running out of. High ground.

I'm glad I got the news this morning, before I began rehearsing with the kids I've been coaching for our summer show on Sunday. Doing what I love. If I hadn't, I'd have been checking my email all day to see my result. The kids might have noticed a change in my mood when I saw it. This way, I had a chance to digest it before rehearsal started.

I'm doing OK. Thanks for asking. I expected this result. God is still good, and I am still his servant. On Monday, I'll find out if there are better options for me than what my oncologist offers. If not, it will make this an easy decision. #waroncancer #bearingwitness