Saturday, September 30, 2017

To Know Or Not To Know?

Day 4 of hospice care. Still no symptoms.

Is it better to know in advance that you are dying, or that a loved one is? Or is it better to have it happen suddenly, without warning? It depends on who you ask. There is sharp disagreement among my own loved ones about this.

Many will not like this post. It's one I've been waiting to write since June of 2016, when I read a Facebook post from my friend Trevor Downing. Trevor and I have very different spiritual beliefs. He's an atheist and I'm a Christian. But we are very much on the same page when it comes to our view of mortality. Here is what Trevor said in his post:

I consider myself fortunate to have an idea of when I'm likely to die. It has allowed me to make peace with the world, to say my goodbyes, to get used to the idea of being here no more. Most people have no idea that they are about to die, so leaving unfinished business, and not making the most of their last days. Cancer for me was an opportunity to become a better person. I don't worry about death as I have little control over it when it comes. Each morning I awake and enjoy life as I'm still here.

Trevor's post resonated deeply with me. I've saved it all this time, waiting for the day I could write about this without people calling me a defeatist. I've had that happen a lot, in spite of what most would call a very positive attitude. Trevor has accused me of this in the past. In fact, he proposed a wager as to whether I'll still be here for New Years Eve, 2020. The trouble is, I have to die to win the bet. Smart man.

I agree completely with what Trevor wrote. I like knowing what's coming, and approximately how much time I have. It helps me plan and prioritize. It's a great motivator. I know my time is short, so I'd better get busy while I can. It gives me the chance to say my goodbyes. It helps me to make sure there's nothing left unsaid or undone. It gives me the time to document the whole process over a two and a half year period. It's given me time to change and achieve things I never would have achieved otherwise.

Since I feel this way, I've felt it necessary to tell people who might not know what's going on. I don't want them to be shocked when I suddenly start to deteriorate in front of them. But maybe that wasn't the best thing for everyone I've told.

Another wise man, Mark Brewer, once said, "The good thing about cancer is, it gives you time. The bad thing about cancer is, it gives you time." For some, time is not a luxury.

I have friends who have lost loved ones in a variety of ways. Each feels that the way they lost their loved one is worse. Each has good arguments in their favor. But the most persuasive argument against my view came from my own wife.

Last week, she told me that she's been experiencing grief for a long time. By the time I die, she will have been going through the grieving process for something like two and a half years. Then, after I die, she'll go through the same grieving process she would have had if I'd died in a car accident. She recognizes that there are advantages to knowing in advance, but there is a huge downside too. Two more years of grief than she would have had otherwise. It's amazing that she doesn't show it more than she does.

I know this is true of many who are close to me. Most have been preparing for this for at least a year, since I was diagnosed Stage 4 in September of 2016. A very few have known from the beginning that this was coming. Or at least, very few have wanted to admit it. It's easy to understand why. As my dear friend Nikki once said, "We don't want to live in a world without Mark." It was one of the nicest things anyone's ever said to me.

But I always knew. As soon as I found out how serious and aggressive my disease is, I knew how this would end. I felt soon after I was diagnosed that I had about two years. I don't know how I knew that. I just did. That feeling never changed, even when things were going very well. Close friends know this to be true. If my oncologist's estimate is correct, I will have been off by about six months. It will have been approximately two and a half years from diagnosis to death.

This is why I listen to my heart. It's usually pretty accurate. And speaking of accurate, when I asked my oncologist for a prognosis a year ago, he said if I respond well to treatment, I could live three to five years. If not, a year or two. I tell that story in Life Expectancy, written September 16th, 2016. I did not respond well to treatment, or at least not for very long. If I'm looking at four or five months from today as my sell-by date, it will have been roughly a year and a half since he gave me that prognosis. Pretty accurate.

When I wrote that post, I was chastised by many for believing him, as though disbelieving him would help me live longer. But I knew he was right.

Even so, for most of the time since I was diagnosed, I haven't felt like I was dying. I felt pretty much normal. I still do, for the most part. Physically, at least. When I visited my family last February, one of my sisters asked if I felt like I was dying. I said no without hesitation. I knew that I would die, but I didn't feel like I was dying. But in recent weeks, that has changed.

Since sometime in August, I've had this feeling that I've only told a few people about. I can feel that I'm dying. It's nothing physical. It's more in my heart and spirit. What does it feel like? It feels like certainty. It feels like a slow decay has begun. It feels right that I am in hospice care now. It feels like God is looking at his watch, wondering when I'm gonna show up. Typical singer, always late.

But at the same time, I am in great spirits. I love what I'm doing, mentoring and writing. I'm having lots of fun. My days are not spent waiting for death. In fact, my friends have had to get used to my dead guy jokes. You have to have a sense of humor about this. If you don't, you really are just waiting to die.

The band I'm in is about to get band pictures taken. But I won't allow myself to be in the picture, because as I told them, you don't want a dead guy in your band poster. That was a real knee slapper. We're performing at an annual event here in Denver called Prog Fest on October 29th. We're closing with two songs from Pink Floyd's Dark Side Of The Moon; Time and The Great Gig In The Sky. Yes, we have a girl singer who can sing The Great Gig In The Sky. It will give you chills.

There is a speaking part in that song that I've never paid any attention to. I can't understand what he's saying, and I've never bothered to find out, even though I've owned that album since it came out in 1973, and I've listened to it hundreds of times. But since I'm not doing anything at that point in the song, and I'm the best actor in the band, I volunteered to do it. Then I saw what the words were.

I've performed at Prog Fest many times. My first performance at that event was in 2006, when a group of us did another Pink Floyd piece, Shine On You Crazy Diamond. You can find the video on my YouTube channel here. So it's fitting that my final Prog Fest performance is another Pink Floyd song. They've always been one of my favorite bands. When The Great Gig In The Sky begins, and my speaking part comes, these are the lines I'll be delivering, verbatim from the album. My parting words to the Prog Fest crowd who has seen me perform so many times.

And I am not frightened of dying
Any time will do, I don't mind
Why should I be frightened of dying?
There's no reason for it, you've gotta go sometime

I never said I was frightened of dying

I'm sorry, but that's spooky. It was my idea to do that song, but only because I wanted to hear our singer sing it. I had no idea what I'd be saying in a speaking part I didn't even know I'd be doing. How bizarre is that? And how in character with the way my journey has gone from the beginning. One serendipitous event after another.

This is why, for me, it's better to know. If I didn't know that this is my last Prog Fest, the significance of those words would be lost on me. The significance of my last public performance would be lost on me. I'd miss how precious time is.

But at the same time, I understand that you may not feel the same way. For you, it may have been months or years of grief, and we're not even to the bad part yet. I am sorry for your grief. Allow me to be the first to say that I'm sorry for your loss. Thank you for sticking with me even though it hurts, and the hurt will get worse. And the more you love me, the worse it it will be when you have to live in A World Without Mark.

Whether you think it's better to know or not, we all get off at the same exit ramp. We all know it's coming, we just like to pretend it's not. You might think my expected death is terrible, but an unexpected one can happen at any time for any one of you. So don't wait until you know you're dying to tell the people close to you how you feel about them. Don't wait to get your ducks in a row. Then you won't have to worry about whether it's better to know, or not to know. #waroncancer #bearingwitness

Wednesday, September 27, 2017

Welcome To Hospice

Day 1 of hospice care. No symptoms.

We met with a nurse from Denver Hospice today. This should have happened earlier, but somehow the referral from my oncologist's office had been faxed to the wrong number. Faxes in 2017? The 1980s called. They want their technology back. Anyway, once the referral went through, Hospice called almost immediately. This is a very good sign, but it makes me glad there was this delay. I would not have been ready to meet a new team a week ago. I was still mourning the loss of my oncology team. Prematurely, as it turns out.

I was surprised that they could schedule us so soon. When the call came yesterday afternoon, they were able to send someone this morning. We were told to expect calls from members of my new team over the next few days. All of this shows why my oncologist referred me to them. They respond very quickly.

The lady who came to our house today was named Paula. She was the admitting nurse, and said we wouldn't see her again after today. Her only purpose with us was to admit us for hospice care, and explain the services that are available to us. She gave me the book pictured above.

I haven't read through the book yet, but Paula directed me to the page that talks about what to expect in the first two days. An appointment will be made with my new hospice nurse, and a "comfort kit" will be delivered, containing medications often needed by dying patients. Including morphine. I hope I never need it, but I probably will at some point. It will be very strange receiving that package tomorrow, when I expect to still feel fine.

Given my experience with medical offices, I'm surprised that things are moving this quickly. Paula said that my oncologist refers many patients to them, and I'm starting to understand why.

Paula said Denver Hospice is known for their ability to manage pain. I explained that my priority is remaining lucid so I can write, drive, and interact with people. She assured me that this is possible. They do it all the time. She told me they have over six hundred patients in Denver right now, and all but a few are at home. That's exactly what I wanted to hear. But she also said something I wanted to hear even more.

She called my oncologist's office to ask if he could be my doctor in hospice care. He agreed, which means I can keep going to his office and see my team as more than a visitor. This makes me happier than I can describe. There has been a throbbing ball of sadness in my heart since the day I said goodbye to them. I was fine for the last few days, as long as I didn't think about it. Then Prostate Cancer Foundation reprinted my blog post about them, The Hardest Part, and it brought it all back. But now that I know I can go back at least a few more times as a patient, that ball of sadness is gone. I feel much better about things now, knowing I don't have to make such a clean break with them.

Paula had me sign several forms, including one that's very important to me. A Do Not Resuscitate form. If I die, let me die. Don't crush my ribs in a vain effort to bring me back. No CPR. Quality of life over quantity.

I know this is hard for you to read. It was hard for me to write. There is a sudden finality to things now that this step has been taken. But all it does is motivate me to keep doing what I can while I can. I still feel fine, and as long as that's true, I'll keep going. I'll probably keep going when it isn't true too. Cancer will stop me one day, but not today.

But make no mistake, a page has turned. The time for treating the cancer is over, and the time for keeping the patient comfortable has come. Please honor my request to stop suggesting treatments. Anyone who does will only show that they didn't read this, or they don't care how I feel, or both.

A friend said to me that no one tells us how to die well. It's a subject that nobody wants to talk about. Well, I'm gonna talk about it. We all must die, and I hope to die well, and by documenting the process, show others how to do so.

I'll post again when I know more, which should be soon. I expected this initial visit from Hospice to go well, and it went better than expected. I'm excited to meet my new team, especially since I don't have to give my old one up so soon. And I'm looking forward to having lots to write about.

Time is of the essence more than ever before. I'm calling the family in. If we are close, I'm calling on you. Sharon and I need you. Your friend is now in Hospice care, and your presence is requested. Be there or be square.

I've never been afraid of dying. I've been able to see this coming for two years now. I regret running out of time, and I naturally want to minimize suffering, but I don't fear death. In fact, I don't fear anything. I am beyond fear. When Eternity is this close, there is no place for fear, only love and freedom. I am free because of love, and there is no fear in love. Perfect love casts out fear. (1 John 4:18)

And so it begins. The third and final phase of my cancer journey. The first phase I call diagnosis, the second Stage 4, the third is Hospice. Each phase has taught me much, and I expect to keep learning until the day when the ultimate aha moment comes. #waroncancer #bearingwitness

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