Wednesday, August 31, 2016

Serious Business

Before I get into the real news of the day, my test results, I need to update you on the subject of most of my last post, the missing cross pendant that I was so sick about losing. It's embarrassing, though. Feel free to laugh. I did. I found it hanging on a hook in my closet yesterday. It's a hook that I rarely use or even look at, which is why I never looked for it there. I happened to see it when I was changing clothes yesterday. I don't know what possessed me to hang it there, instead of where I usually hang it when I'm not wearing it.

I feel like such an idiot. And after I made such a big deal about it in this blog! It was hanging in my closet the whole time. I thought I had looked everywhere it could possibly be, but apparently not. My wife was tempted to ask me if I'd checked the freezer. That's a running joke at our house. I've put some strange things in the freezer over the years. I actually accused my dog of eating it, because I've caught her chewing on its leather strap before. But it was just me, being my usual absent-minded self.

So, I'm embarrassed, but I had to tell you. If you want to make fun of me, go ahead. I'm laughing at myself about it. But I'm very glad I had it for today. I was able to wear it to the doctor's office. Its weight around my neck was comforting. It's the reason I was "feeling hopeful" instead of "feeling nervous" in my Facebook check-in this morning from the doctor's office. I'm wearing it right now. Thanks to everyone who prayed that I would find it! Now if you could pray that the Lord would increase my I.Q., that would be great.

I was a bit embarrassed about my last post even before I found the pendant. I have so many brothers out there suffering so much because of this stupid disease, and here I was feeling like the sky was falling because I couldn't find a piece of jewelry. One day, I'm sure I'll wish very much that a missing pendant was the worst of my troubles.

OK, enough of that. We actually have serious business to attend to. Very serious.

My PSA is 2.7, up about seven tenths of a point in the last six weeks. Not good. At this point, it's not so much about the number itself, but the trend. And the trend is in the wrong direction. My last increase, from 1.42 to 1.97, was five tenths in five months, so rate is increasing. But that doesn't necessarily mean the Lupron is losing effectiveness. It still is starving a certain percentage of the cancer cells, just not all of them. Some of the cells are resistant, and the resistant ones are multiplying faster all the time. The question is, how to we approach it?

My oncologist thinks it's possible that the six month Lupron shot I've been getting may not be effective for that long of a period. So he wants to try the four month version of the shot and get another PSA in two months. If my number is down at that point, maybe we just get the shot more often.

But what my oncologist really wants me to do is go for radiation. I've set up a consultation with the radiation oncologist I've seen twice to discuss treatment. But first, my oncologist has ordered a new bone scan and a CT scan of my pelvis area. Those tests should show if my cancer is still confined to the prostate. If these scans show no evidence of metastasis, I'm still a candidate for the radiation treatment they recommend. In that case, I will need to decide quickly whether to go ahead with it.

If, on the other hand, the scans show that my cancer has metastasized, we'll pass on radiation. All that will be left is "systemic" treatments and alternative treatments. To the dismay of some of my loved ones, I've already ruled out chemo. That's my choice. Hormone treatment alone is not likely to sustain my life for more than a few years, maybe less. But that's assuming that alternative treatments won't make a difference, and that's not an assumption that I'm willing to make.

The aggressiveness of my cancer robs me of the luxury of time. One thing you often hear said about prostate cancer is that it's a slow-growing cancer. That's true in most cases, but not in mine. So I can't afford to wait and see. I don't have appointments set for the scans yet, but they will happen within the next week or so.

My thought going into today was that if my PSA had risen, it would mean that I've had my last Lupron shot. In that case, I'd seek some naturopathic treatments for the next year to 18 months, so I could get some things done that are important to my wife and me. Things that could help us in our retirement, and/or help her after I'm gone. I don't feel like I can take months off for harsh conventional treatment right now. But my oncologist doesn't think I have time for that.

He says if I take a year off from treatment, by this time next year my cancer could spread like wildfire. I could have terrible bone pain, which would prevent me from doing everything I want to do anyway. If I refuse the conventional treatments he recommends, I could have a very short remaining time indeed. Maybe a year or two.

Of course, I wouldn't be doing nothing. I'd pursue other treatment options. My hope is that they would keep my cancer under control, if not cure it. I'd be hoping those treatments would help me "hold serve" while still feeling good enough to get these tasks done that are so important to me. But it's a big risk. If they do nothing, I'd be in big trouble fast.

The questions that I have to answer for myself are these: How much time am I likely to get from the treatments my oncologist recommends? If I do everything the doctors want, will cancer come back and get me anyway in a short period of time? And what will my quality of life be in the meantime? And, oh yes, what will all of this cost?

I was talking with some friends a few weeks ago, updating them on my treatment, and one of them said, "You just have to do what they say, right?" I looked at him and said, "No. It's my choice, not theirs." He was surprised by my answer. But it is my choice. I have to decide how much I'm willing to put myself through given my odds.

I've stated many times that I'm more interested in quality of life than quantity. If an ugly ending is in my future regardless, how much hell am I willing to put myself through to put that day off?

The good thing is, I'll have plenty to write about in the next few weeks! Since I started this blog, for long stretches, it has been light on medical information and heavy on navel gazing. That won't be the case for most of September.

So, to summarize, I get a four month Lupron shot on Tuesday, September 6th. Sometime that week, I expect to get a bone scan and CT scan. If they don't detect metastasis, we'll consider radiation treatment. Either way, I will seek alternative treatments in addition to whatever standard treatment I'm getting. And I'll be as transparent about this as I can be, every step of the way.

Thank you for braving this roller coaster ride with me. Your response to my last post made me feel very loved. God is good, and so are his people. I can still feel your love and prayers. They sustain me. I need them more than ever now, and so does my wife. Thank you for being there for us.

I'll close with a quote from my friend Robert Cannady, a dear cancer brother who has become a friend over the last few months. You may have heard or seen me quote it before, but I haven't shared it in this blog yet, and it bears repeating. He said, "Cancer hit me over the head and cracked my heart wide open." Yup. That's what happened to me too.

So please keep it up. Keep praying. Keep loving on us. We need it. And the next time I lose something, ask me if I've checked the freezer. #waroncancer

Monday, August 29, 2016

The Missing Talisman

This is a big week for me. Today, I finish the second-to-last recording project of my 29 year career in music. I started recording for a living in August of 1987. I'll miss 30 years by one year, but that's OK. I'm ready to retire from music. I have other passions now. I'm very grateful for the career I've had, but it was winding down of its own accord well before I had cancer. Cancer was just the push I needed to find a new path. But I didn't find that new path, it found me.

Also today, Monday, August 29th, I get my next blood draw. On Wednesday, I see my oncologist and find out what my numbers are. That result will determine whether I continue receiving conventional treatment or not. More on that in a future post.

I've been talking about this upcoming test for a while, but in case you haven't been following along, let me catch you up. I've been on Lupron, which is a hormone suppressant, since September of last year. Prostate cancer feeds on testosterone, rather than sugar like other cancers. So suppressing testosterone starves the cancer. Many with a less aggressive cancer can stay on it for years, but since my cancer is very aggressive, my doctors only expected me to get 18 months to two years out of Lupron. After my first shot last September, Lupron brought my PSA down from 15.8 to 1.42. I got my second shot last March.

Lupron, by keeping my PSA down, keeps my cancer under control. When my PSA starts to rise again, it means Lupron isn't working anymore, and my cancer is on the move. When I had my last test in July, my PSA had risen to 1.97. My oncologist said that it could be normal fluctuation due to the fact that I still have my prostate. He recommended waiting six weeks, and testing again. If my number goes back down, all is well, and I get another shot. If it's up further, we have a whole new ball game.

If Lupron isn't working anymore, there's no point in getting another shot. The question will be, where do we go from there, if that's the case? If Lupron only lasted me a year, that's very bad news. It means I'd burn through other treatments fast also.

When you have prostate cancer, every PSA test is big. And you're nervous before every one, even if you've been told you're cancer free. But I'm especially nervous about this one. It will determine a lot for me. It will have huge implications for my life expectancy. So while I'm not afraid, or worried, I am nervous.

It's interesting to me that I'm taking a big step towards ending my music career on the same day that I'm being tested for the very thing that's ending it. It seems fitting, somehow. I have everything I need to finish my music work, but I don't feel like I have everything I need to get through my test result on Wednesday. That makes me extra nervous.

This is where this post will go off the rails for some of you. I debated whether to talk about this publicly at all, but I suppose that some who read this will understand. Maybe you have something similar that helped you get through a difficult time.

I'm missing something that's very important to me, and there's no replacing it. Not in time for this week, anyway. I realized last Friday that I had lost my cross pendant. The one that's pictured at the top of this post and many others. It was a gift from a friend, made for me by a cancer brother. If you want to read about how I received it, and what it means to me, read my post from last February, The Wall.

This pendant means a lot to me. In my mind, it's become a sort of talisman. It represents the power of God over my cancer. And now, I can't find it. Just when I really need it.

If I had it, I'd wear it for my blood draw. I'd also wear it on Wednesday when I see my oncologist, as I have each time I've gone to see him. It would comfort me. It might give me an opportunity to talk to someone about it. I've received many compliments on it, and I've been blessed to be able give them to some cancer brothers of mine. They can testify to how comforting they are. They can also testify to what a blow it would be to lose it.

The irony of this is that I've always been a science guy. I'm about rationality and logic. I'm a thinker. So I know perfectly well that this pendant is just nails, wire, and a leather strap, with a few other touches. I know it isn't magic. But at a time like this, rationality can go right out the window. At a time like this, all kinds of things seem possible.

I don't believe in omens or portents. I don't believe in fate. But I do believe in signs. And, as irrational as it is, I can't help but see the loss of my pendant as a sign. Scientifically, I know that's ridiculous. A piece of jewelry couldn't possibly affect my PSA score. But that doesn't make me feel better. Scientifically, it's just metal, wood, plastic, and leather, but scientifically, my wedding ring is just metal and rocks too. Some things are more than the sum of their parts.

Like you and me. We're more than the sum of our parts. Every act of love is more than the sum of its parts. And this pendant was a gift of love from a Stage 4 cancer patient, given to me through one of my closest friends. That makes it much more than the sum of its parts.

Don't get me wrong. I still believe in the Christ that my pendant represents. I still believe he can heal me if he chooses to do so. I don't think the loss of my pendant reduces his power one bit. But it makes a difference in how I feel. And I can't help but feel that maybe losing it at this particular time means something. And I'm afraid it might mean something bad.

Again, I know that if my PSA goes up again, it's not because I lost a keepsake. In my rational mind, I know that's not possible. But I really wish I could find it just the same. I need it this week. But I need the God it represents more, and I'll never lose him.

Maybe I'll find my missing talisman soon. Maybe I'll get another one eventually. By the way, if I sent you one, don't send it back! I don't want yours. I want mine. And for all I know, my PSA will be back down where it was or lower, and all my nervousness will have been for nothing. But that's not how it feels to me. I hope I'm wrong, but I don't think I am. And losing my pendant seems like confirmation of what I've been expecting.

No matter what the number is, God is still God, and I'm still OK either way. I'm probably making a mountain out of a molehill. I'd be nervous about this test even if I had a collection of those pendants. But I still wish I had it. I can't imagine where it went.

I'll post again on Wednesday, after I have my results. If my PSA is climbing, this will be a very interesting consultation. I'll have lots of information for you.

This post has not been very well constructed, or thematic, or spiritually uplifting. But it's what I'm going through right now. I feel like a big part of my purpose for the rest of my time here is to give you this window on what it's like to deal with this. The smallest things take on major significance. And timing is everything. I've talked throughout this process on how amazed I've been at God's timing. That's partly why I feel like the timing of this means something too.

Thank you for hanging in there with me. Thank you for your love, support, and prayers. I need all of that this week. That's what's really carried me through all of this. But all the same, I still want my pendant back. #waroncancer

Thursday, August 25, 2016

The Gift In The Wound

A good friend of mine named Sandi used the phrase the gift in the wound to describe the benefit of our friendship recently. I find that phrase so evocative, and so descriptive of much that has happened since my diagnosis, that I felt moved to write about it as soon as she said it. I've been very busy wrapping up one of my final recording projects this past week, so I haven't had a chance to write about it until now. To be honest, I don't really have the time now. I'm just taking it. My therapist urged me not to wait until next week, after I finish my recording project, and I think she was right. The therapist that Sandi helped me to find. But I'm getting ahead of myself.

In order for you to fully appreciate what she said, I need to tell you how we became friends not so long ago. I've known her husband Todd for years, as we're both musicians, and both part of the same "music club," as Sandi puts it. She and I had met casually, but didn't really know one another until last December.

My wife and I host an annual summer barbecue at our home for this group, and also a holiday party in December every year. Normally, Sandi doesn't attend these functions because they have a young child. She stays at home with their son while Todd comes to the parties. But this last December, she was able to come, and she and I finally really met. That's where our friendship began.

By the time this party was held, most everyone in our "club" knew about my cancer, including Sandi. At one point in the evening, I went up to her to comment on how all of our pets seemed drawn to her. We ended up talking for about an hour. Sandi is a professional therapist. I don't remember much of our conversation, but afterward, I felt much better. I was very impressed by her, as you can well imagine.

Three days later, Sandi's father passed away, suddenly and unexpectedly. Naturally, my heart went out to her and her family. I reached out to her, and we began messaging back and forth regularly, as a way of supporting one another. As a result, we've become very good friends. We were talking recently about the serendipity of the timing of all of this, and what a benefit our friendship has been to each of us during this difficult time, and she called it the gift in the wound. I haven't been able to get away from that phrase since.

Sandi and I each have our own wound that we're nursing. Mine is cancer. Hers is grief. And our friendship is the gift in that wound. Each of us may wish that our wound had never occurred, but without them, we would not even know each other very well now, much less be friends. We'd be acquaintances, at best.

When Sandi learned of my difficulty getting music work done due to being overwhelmed by my circumstances, she used her connections to help me find my therapist. Therapy has made a huge difference for me. The gift in the wound.

I can think of a number of relationships that this phrase describes perfectly. My wife and I have a long time friend who is recovering from her battle with breast cancer. Because of her cancer and mine, our friendship has been revitalized. The gift in the wound.

We have another friend who is an ovarian cancer survivor. Her husband has been one of my closest friends for more than two decades, but we didn't really know her very well until I was diagnosed. Now, we are the closest of friends, and she and her husband are a huge lifeline for us. The gift in the wound.

Her husband, Paul, my close friend since the early 90's, maybe even the late 80's, (neither of us is sure) have a huge, and very similar gift in the wound story that I recount in my posts Hey Dad and Revelation Song. I won't revisit that story here, but if you're interested, you can read those posts.

I could give many more examples, but for once, I think I'll keep this post relatively short. My point is one that I've made over and over in this blog. The relationships that have begun, or grown, or deepened during the past year are what has kept me going. That's why I say that, even if I could, I wouldn't change my diagnosis. Not if it meant that I had to lose all that I've gained.

You all know how I'm going to conclude this post. I have to say, yet again, that the relationship that is the greatest gift in this wound for me is my relationship with God. All of the love I've received from these friends, and so many more, are, in my view, an extension of his love for me. By loving us, you act like him. And his ultimate act of love is the ultimate gift in the wound. By his wounds, he showed exactly how much he loves us. With every expression of love that we extend to a friend in need, we reflect that love.

Love is the gift in the wound. I don't know what your wound is, but if you look for it, you will find the gift there. We are all wounded from time to time. But all of us also have the capacity to love and be loved. Embrace the love. Embrace the gift in the wound. It will transform you if you do. #waroncancer

Thursday, August 18, 2016

Heart On My Sleeve

Cancer has changed me in many ways. In most ways, I believe it's made me better. Less self-centered, certainly. And definitely happier. More at peace. I think the two go hand in hand. The less self-centered we are, the happier we are. That's certainly been true for me.

I've always been an emotional guy. If I was asked to say grace for a meal with loved ones, I would always get choked up. I come by that honestly. I'm my father's son. But now, I'm that way all the time. I wear my heart on my sleeve, as the saying goes. It was Shakespeare who coined that phrase in Othello in 1604, and we still use it today.

I never used to be one who was moved to pronounce blessings on people. I was never known as an encourager. But these days, I just can't seem to stop myself from that kind of behavior. And I don't want to stop myself. It's too much fun.

It comes out in my desire to mentor young musical talent. I never used to have time for that. I was too busy trying to make money. Now I have this urge to share what I've learned with young people who want to have a career in music. I got the chance to do that recently, and I'm incredibly grateful for the time I got with those kids and my friends. It was, in many ways, just what I needed. I hope I helped them, but I feel like I got more out of it than they did.

Trust me, I was never that guy before. Not even close. Volunteering to help others, unless we were very good friends, was not my style. I was more interested in promoting myself. It turns out that it really is more blessed to give than to receive. The giver gets the greater blessing than the receiver. I wish it hadn't taken cancer to teach me that. But at least I finally learned it.

It also comes out in my intense, constant desire to tell people how much they mean to me. There's been a whole lot of "Sit still while I tell you how much I love you" since I learned that I have cancer. That's the thing about love. The more of it that you get, the more you want to spread it around. And I have received more of it than I can possibly hold. So I have to share the love. If I don't, I feel like I'll burst.

As a result, I tend to make speeches now. I write notes to people. I propose toasts. I can't help myself. It's who I am now. I never used to be that guy, either. Here's an example that I'm not proud of.

When my wife and I celebrated our 25th wedding anniversary in 2002, we had a big party with a recommitment ceremony. We had a cake, and we asked our dear friend Galen Koch to do the toast. He prepared and delivered a beautiful speech which touched us deeply.

Eight years later, in 2010, Galen committed suicide. He had struggled with depression for years. We flew to Ft. Worth, Texas for the funeral. After the service, a group of us went out to eat, and I was asked to toast him. I couldn't come up with anything. It wasn't because I was too broken up about it. It was because I was empty inside. Also, I was angry with him.

But after I got cancer, my attitude changed. I wrote a long, heartfelt tribute to Galen and his family in this blog, Introducing The Kochs. It's one of my most viewed posts. It took cancer to make me realize how much I love Galen and his family, and to tell them so publicly.

Now, when the occasion arises, I'm expected to make a heartfelt speech. If you've only known me well since my diagnosis, you'd think I've always been like this, but that isn't true. Now, I wear my heart on my sleeve. And as I said in an earlier post, I don't care if I get blood all over you if you get too close.

Now, when an occasion is coming up when I feel like I have something to say to someone I love, I work it out in my head ahead of time. I rehearse it. I need to do this so I don't cry. If I try to ad lib, it's all over. I can't get through it. So I prepare.

But last Saturday, I almost dropped the ball. Some close friends of ours who are moving away had a goodbye party for their friends here in Denver. My wife and I were honored to be there, though we had not met most of the guests before. A couple of hours in, it dawned on me that someone should propose a toast to our hosts. Naturally, I thought that someone should be me.

I can't for the life of me understand why I hadn't realized this and prepared for it well in advance. But once the decision was made, I started putting it together in my head. 30-45 minutes later, I was clinking glass together and calling for everyone's attention.  I had to pronounce my blessing. I would have regretted it forever if I hadn't.

Afterwards, the couple I toasted told me that they had both totally expected me to do that. One said she would have been disappointed if I hadn't! I've gone from being the guy that doesn't know what to say to being the guy who is expected to say something heartfelt.

As I keep saying, I can't take credit for any of this change that's taken place. It's not like I sat down one day and said, "Well, Mark, now that you have cancer, you'd better start being nicer to people!" It just happened. It's what another friend of mine calls the gift in the wound. Sounds like the title of a blog post to me. I think that will be next.

I have no interest in going back to being the guy I used to be. Giving and receiving love is what I live for now. I have been blessed, so I must be a blessing. Otherwise, the blessings I receive go to waste.

I don't know how much longer God is going to keep me on this planet, but for as long as I'm here, I'm gonna keep wearing my heart on my sleeve. If it gets bruised along the way, so be it. When I feel the time is right, I may make you sit still while I tell you how much I love you. It may well happen in front of others in a public setting. Don't think you're gonna squirm out of it, either. It's who I am now.

I will give you a new heart and put a new spirit in you; I will remove from you your heart of stone and give you a heart of flesh. (Ezekiel 36:26)

I'm eternally grateful to God that this has finally come true in my life. My heart of stone has been replaced by a heart of flesh. I wouldn't have it any other way. #waroncancer

Monday, August 15, 2016

From Belief To Knowledge

In my last post, I talked about how I've always believed in God, but that God only became real to me when I found out that I have cancer. "It took cancer to turn belief into knowledge for me" was the way I put it. But a comment from Michael Goertz forced me to examine this. He simply asked how I got from belief to knowledge. That's a question that many books have been written about. I am not as smart as the authors of those books, but I'll give it a try.

I thought I had answered the question in the post, with the above statement. But I suppose more explanation is in order. I'm going to try hard to keep this from being an esoteric philosophy treatise. Or a theology paper. I've been praying about how to explain this in a way that would make sense no matter what you believe.

The classic definition of knowledge in philosophy comes from Plato. He said that knowledge is "justified belief." I take that to mean that if you believe something, there has to be some justification for your belief to turn it into knowledge.

I believe that, the next time I get into my car, it will start. That belief isn't based on nothing. It's based on the fact that it's started every time I've turned the key in the ignition. I base my belief on personal experience. That makes it justified belief. That doesn't mean that my belief is necessarily true, though. The next time, it might not start. So, while I'm confident that my car will start the next time I need it, I can't say that I know that for sure.

Here's a better example. How do I know that my wife loves me? I know because I know her. I know because I've lived with her for the past 39 years.  I know because she had dinner waiting for me when I got home late last night from an all-day recording session. And I know for a million other reasons. Again, I know that she loves me because I know her.

The theme of this blog, from the very beginning, has been this topic. Not just my cancer, but how God has used it to get through to me and change me. Hence the title, God's 2 By 4. Cancer was the 2 by 4 that God used to whack me upside the head in order to get my attention. I don't think God gave me cancer, but he used it to bring me closer to him.

Don't get me wrong. I haven't heard God speak to me audibly. As I said in an earlier post, I used to want God to do that. But in every example of that I've seen in the Bible, when God speaks audibly to someone, it's not usually a fun experience for the listener. I'm no prophet. I have no evidence that I could use to prove God's existence in a court of law. What I have is my own personal experience.

I'm a believer, and I'm also a science guy. I want proof. I want evidence. While I have nothing to show you to prove God's existence, I do have some justification for my belief, to meet Plato's standard.

While I've tried to live as a Christian for most of my life, I admit that I haven't worked very hard to know God. I loved God, but I wasn't in love with him. There were times in my life that I felt very close to God, and other times when he seemed very far away. And yes, there have been many times in my life when I've questioned his existence. But not now. Now, the reality of God seems all too obvious to me. All I needed was some challenge in my life, to quote a friend.

That challenge came in the form of cancer. Not the kind that can be taken care of with an operation, but the kind that will almost certainly shorten my life drastically from what I was expecting. When some people get a diagnosis like that, they get angry at God, or become convinced that he must not exist, or else this wouldn't have happened to them.

But I didn't react that way. And as I keep saying, I can't take any credit for how I reacted. Control was simply ripped from my hands, and I had to rely on something more than myself. That's when God came flooding in.

I've experienced God's presence before, but not like this, and not this effortlessly. I can feel God's presence all the time now. Not just when I'm praying or worshiping, or in church. It's constant. If I let myself focus on him for too long, I lose control of my emotions. He's all too real.

What's more, because he's been so real to me for the last year, I am finally getting to know him. I know that this sounds weak to a skeptic, but I know God is real because I can feel him with me all the time.

I realize that this is what some refer to as "appealing to the burning in the bosom." I know that, logically, just because we feel like something's true, that doesn't necessarily prove that it is. People are persuaded to believe all kinds of things. Our minds and emotions are very powerful. So you may choose to dismiss my experience as wishful thinking or delusion. I can't prove you wrong. I only know my own experience.

I can't prove to you that my wife loves me, either. But I know that she does because I know her. And I know that God is real the same way. I know he is real because he's made himself real to me in ways that I can't explain. I know he loves me because I've gotten to know him over the last year. He's made his love plain to me in much the same way that my wife has. She's been there for me. So has God. So have many people, by the way. The reality of love gets proven to me every day, in many ways. How can I not know this, after a whole year of it? My experience of the past year, in my mind, constitutes justified belief, which, according to Plato, equals knowledge.

I don't know if I've explained this very well or convinced anyone. It wasn't my purpose to prove God's existence to you. Only he can do that. I hope that it doesn't take a cancer diagnosis for you to gain that knowledge. But that's what it took for me. And because of the way that his love for me, and yours, has been proven to me in my own heart and life these past twelve months, I am confident that God is real, and that he loves me. I know. That's how I got from belief to knowledge. #waroncancer

Friday, August 12, 2016

The Unknown

One of the greatest fears that we face as cancer patients, and that our loved ones face, is fear of the unknown. I've heard it over and over from friends I've made on this journey. A close friend of mine faces fear of the unknown because of her husband's rising PSA, as incremental as those increases have been. A new member of my online support group, still reeling from her husband's diagnosis, talked just today about her fear of the unknown. My friend Ed Heck, who has just been diagnosed with metastatic prostate cancer, has a long, unknown path ahead of him. We all face it.

I too am facing the unknown. The most immediate unknown for me is my next PSA test. If that number goes back down, it will mean that my current treatment, Lupron, is still keeping my cancer in check. I'll get my next shot soon thereafter, and everything remains the same for now. But if the number continues to go up, the way my last number did, it means that Lupron has stopped working a year to six months earlier than was expected. That won't be a good sign, if that's the case.

I have a little more than two weeks until my next test. A few days later, I'll meet with my oncologist, and we'll see where we are. Until then, I'm staring into the unknown. It's like a fork in the road. One direction looks like a familiar path. The other is shrouded with fog.

This phenomenon is not unique to cancer, of course. We all face the unknown, and many of us fear it. I've never been one of those people. I tend to look into the unknown with anticipation, even excitement. I want to see what there is to see when the fog lifts. But that's my optimistic nature taking over. I'm very grateful for that. It's helping me a lot during this time in my life.

But everything that happens in my life, both large and small, is seen through the lens of cancer. Within the last few weeks, I've noticed a numb area on the outside of my left thigh. It's in the shape of a long oval, about six inches long. I occasionally feel sharp pains in it that only last for a second or so. It began about the size of a dime, and grew to about eight inches long, then receded to six inches, where it's stayed. I called my oncologist about it, and he didn't think it was anything to be concerned about unless it kept growing. I asked about it in the support group, and nobody else has experienced this. But I can't help but wonder if it's related to the cancer. It's an unknown.

If it does turn out that my current treatment isn't working anymore, then we really will be facing the unknown. Will my new treatment regime help, or will the aggressiveness of my cancer win out? If Lupron only lasted half as long as my doctors expected, what does that mean for other treatments? What does that mean for my life expectancy? These are big unknowns.

But while we may fear the unknown, I find myself asking if I really want the answers to these questions. I do want to know if I've had my last Lupron shot, but do I want to know how much longer I can expect to live? Do I want to know if I'll have pain from my cancer? Do I want to know what I can expect as I deteriorate, should that happen? I think I do, but do I really?

I've never been much of a worrier, so I try not to think about those things. The unknown will become known all too soon. As Jesus said, each day has enough trouble of its own. Instead of thinking about the unknown, I'd rather focus on the known. So here's what I know.

I know that I am loved. You prove it to me every day. Until I had cancer, that was an unknown. It was only after I went public with my diagnosis that the reality of love was brought home to me.

I know that I have a purpose. I'm trying to fulfill that purpose right now, by writing this blog. Some of my posts reach many. Some only reach a few. But each post comes from my heart and experience. Like a preacher whose sermons hopefully help a congregation, but are really for the one who preaches, I hope my blog helps those who read it. But it's really for me. I do it because I need to do it.

I know that there are many others on this road with me. I know I'm not alone. That doesn't make the road easy, but it does bring comfort along the way.

And as I keep saying, I now know that God is real, and that he loves me. You may not feel like you know that for sure. I didn't know it for sure for most of my life, even though I believed. But belief and knowledge are two different things. It took cancer to turn belief into knowledge for me. The knowledge that God is in control (and that I'm not!) is what has given me peace and joy for the first time in my life.

So given what I know, why should I fear the unknown? It reminds me of the words of an old gospel song:

Many things about tomorrow
I don't seem to understand
But I know Who holds tomorrow
And I know He holds my hand

That's all I need to know. #waroncancer

Sunday, August 7, 2016

My Year With Cancer

One year ago today, on August 7th, 2015, I received a phone call that changed my life forever. It was my urologist calling to tell me that the biopsy I'd had done a few days earlier had come back positive. I had cancer. For the next twelve months, my life has been transformed in many ways, good and bad. I couldn't let this day go by without writing about those changes.

This will not be a retrospective, blow-by-blow post. I've written a few of those already. If you haven't been following along with my story, and you want to know those details, I invite you to read 2015, Things I Learned In My 60th Year, and the depressing epic, Full Disclosure. Or better yet, start from the beginning and read this entire blog in order. Many have done that and continue to do it. It makes me very happy when I see that.

Instead of a post like the ones above, this one will focus on the changes that have taken place since August of last year. They are many, and they are profound. Positive changes and negative ones. Which do you want first, the good news or the bad news? Let's start with the negative, and end with the positive.

When you're diagnosed with cancer, everything changes. In one moment, I went from being a professional musician, singer, songwriter, arranger, producer, and worship leader to being one thing; a cancer patient. As I wrote in my post What Am I?, "Like many, if not most cancer patients, I feel like that's what I am. That's all I am. It's the entire focus of my life. Everything else fades in comparison." That pretty much sums it up.

One year ago, I was still physically able to do all of the things that I did before. I didn't need to think about pacing myself. A simple thing like going to an event at Red Rocks in the evening was still doable. But after nearly a year of hormone treatment, things like that seem out of reach. I have to be very careful now how I commit myself. I have to go to bed early. I have to make sure that I get enough rest. If a friend had a late gig a year ago, I could go. Now, if it starts later than 6:30, I have to pass. I just don't have the energy.

Before I was diagnosed, I expected to live into my early 90's, as my family tends to do. Now, I have to plan as though I won't be here a few years from now. That doesn't mean that I don't have hope for a cure, and it certainly doesn't mean that I've given up, but I have to be realistic. Hope for the best, but plan for the worst.

Lupron, the hormone suppressant that I've been on, has wreaked havok on my life since my first shot. I've struggled with hot flashes, emotional peaks and valleys, extreme sensitivity to cold, and weakness. This blog has been, in many ways, one long record of the effects of Lupron on my body and mind. The good news is, I may have had my last Lupron shot. The bad news is, I may have had my last shot because it isn't working anymore. I'll know that in a few weeks.

I've lost a friend or two since I was diagnosed. Most have been there for me in a big way, but a few disappeared. Every once in a while, I think about a conversation I'd like to have with one of them, and realize that that conversation will never take place. They've opted out of my life, so I'm not going to waste any of my limited remaining time on them. There are far too many real friends and new friends that I'd much rather spend time with now. Every one of my cancer brothers and sisters knows what I'm talking about. That's how life is for us.

I've learned about the struggles to get and keep insurance coverage for my medical needs. If you don't live in the United States, you probably have no idea what that's like. When I was diagnosed, we had one private health insurance provider. It went out of business at the end of the year. At the beginning of this year, we qualified for Medicaid, which covered everything at no cost to us for a few months. Then, we lost that coverage, and had to shop for insurance again. Now we have insurance, but with a high deductible. That hasn't been a fun process, and it was a major topic of this blog for a while.

For several months since my diagnosis, I struggled with weight loss. I've always been naturally thin, so losing ten pounds was not a good thing for me. I had to see a nutritionist to learn how to gain the weight back. That process was documented in this blog as well. But I've been staying at my optimum weight for a few months now with no problem.

That's a good place to transition from the bad to the good. And there has been an amazing amount of good.

Over the course of the past year, I've developed a different relationship with money than I used to have. I used to be the guy who was all about making money. I didn't do much volunteering, and what I did, I mostly resented doing. My priority was my paying work, and trying to find more of it. Now, I've discovered the joys of volunteering. I love it. When I have the energy to do it, that is.

Since my diagnosis one year ago, I've gone from trying to keep my failing music career going to seeing it as a thing of the past. I feel like one chapter has ended, and a new chapter has begun. And I don't regret that. It's actually liberating. The stress of trying to find new gigs at my age has been replaced by thankfulness for the career that I've had, and a new desire to do what I feel I've been called to do now; write this blog in an effort to help those who are going through similar things. And mentor young musicians in their formative years.

While I've lost a very few people in my life, I've gained many more. I'm not going to start naming and tagging people here, because the internet would run out of space, as I'm fond of saying. But the relationships have been the best part of this, without a doubt. Old ones have been revitalized, or have deepened. And many new ones have started. It's been an incredible blessing.

As I've said many times in this blog, the biggest, most life-changing revelation that I received from cancer is that I am loved. More deeply and by many more people than I dared imagine. The support that my wife and I have received, financially, emotionally, and spiritually, has been beyond calculation. That support continues to this day. We are more thankful for your support than we can possibly express.

When I was diagnosed last August, we didn't have a church. Our last church had closed in May, and we were adrift in terms of a church home. Now, we have a church that we love and are part of. I experience God every Sunday now on a level that I rarely had before. This morning was a huge example.

Knowing that today was the one year anniversary of my diagnosis has been on my mind all day, as you can well imagine. The fact that it occurred on a Sunday was big for me. I always seem to get emotional in church these days, and I knew that I would be extra emotional today, and not just because of the occasion. It was also Communion Sunday, being the first Sunday of the month. I always get emotional during communion now. But this time, my wife and I were asked to serve communion for the first time in our lives. It was a great honor.

My favorite worship leader these days, Michael Wygant, led us in worship. I always get emotional when he's there. He always seems to pick a song that "gets me." Today was no exception. And to top it all off, the theme of today's service was healing. With all of those factors put together, I was unsure how I'd even get through this service without completely breaking down.

For the uninitiated, most Christians believe in some form of divine healing. In our tradition, our heads are anointed with a dab of oil, and the one who anoints us places their hand on our shoulder and prays for our healing. That was part of the service today. It was the main focus of it. I had this done in a church last September, not long after I was told that I was metastatic. But I've been very public about my cancer in my church. Everyone knows about it, so I spent this past week struggling with whether to be anointed for my healing today.

As you know if you've been reading this blog, while many pray for my healing every single day, I never have prayed to be healed. I don't think I ever will. I'm thankful for those who pray for me, and if you are one of them, please keep right on praying. But as for me, I am at peace with whatever God wants to do. If he wants to heal me, awesome! If not, awesome! I win either way, as I've said many times before.

And there's also the fact that I have a complicated history with divine healing. If you want a full explanation of that, I recommend that you read the post where I wrote about that early on in this process. To bumper sticker it for you, I not only believe that divine healing happens, I know it does. But I also know that it doesn't happen for everyone. And I accept that it may not happen for me.

But back to today's church service. As it started, I was still unsure as to whether I'd go forward to be anointed or not. I didn't really want to, but I felt that I was expected to. I've lived my whole life under the weight of expectations from a church where I was prominent. But now, I think I'm finally free of that. Here's how it happened.

Michael's second song was one that I've sung many times. I've led congregations in singing it many times. But it never hit me the way it did today. It's a song called "Better Is One Day" by Matt Redman. The second verse goes like this:

One thing I ask, that I would seek;
To see Your beauty
To find You in the place Your glory dwells

As I said, many continue to ask God to heal my cancer. But I don't ask for that. I don't want to ask. I want to accept whatever God has for me, no matter what that means. This church service was all about asking God for healing. I didn't want to get anointed today because I felt that it would amount to asking, and I didn't want to ask. But I was afraid of what people would think if I stayed in my seat. I decided that I would let God lead me in the moment. If I felt prompted to do it, I would. If not, I'd stay seated.

Throughout the time that was set aside in the service for anointing, I prayed. Actually, I wept. It was Niagra Falls the whole time. And all I kept thinking about was the words of that verse. One thing I ask. One thing I seek. Not to be healed of cancer, but to see His beauty. To find Him in the place His glory dwells. That is what I ask for. That is what I seek. And that's what I've found.

I never felt prompted to be anointed for healing this morning. I felt that the words of that song gave me permission to stay in my seat. I knew that I might be asked by someone afterwards why I didn't do that, but I no longer cared. And no one asked.

How was I going to serve communion after such an emotional time? Communion was scheduled immediately after the anointing time. But while I cried through most of that part of the service, as that time drew to a close, I felt a strange sense of calm come over me. I was able to be composed during communion. It all worked together for my good. (Romans 8:28)

I can't think of a more perfect way to spend the anniversary of my diagnosis. That church service was exactly what I needed. And of course, I had to write about all of this today. It's my calling. It's my ministry now, as a good friend said to me recently. I hope this post has ministered to you.

The past twelve months have been a year of trial, heartbreak, trauma, and upheaval. It's also been a year of great love and great blessing. If you have been part of this journey with me, thank you! I love you more than words can say. I'll never be able to express my appreciation enough. Your love and support keeps me going.

But one relationship has sustained me more than any other, and it's the one that will last forever. One thing I ask. One thing I seek. To continue seeing His beauty. His glory dwells with me and within me. He is in front of me, behind me, over me, and beneath me. And it's just a taste of things to come.

My year with cancer has been the most incredible of my life. I expect the next year to be even better. Exciting prospects are on the horizon, regardless of what my next PSA test says. And I'm so grateful that you and He will be with me the whole way. #waroncancer

Thursday, August 4, 2016

Adversity, Suffering, And Ice Cream

The amazing artist Karen Sperling posted a quote from Jerry Seinfeld yesterday that resonated with me. As with many Seinfeld quotes, it's funny because it's true. In a recent interview, Seinfeld talked about suffering. He said, "I don't mind suffering. You suffer in all things — work, relationships, whatever else you do … Unless you're eating ice cream, you're suffering."

That's a slight exaggeration, but you get the point. None of us can escape suffering. Not even Jesus could. He even asked his Father if there was any way he could get out of it. If he got a "no," what hope do we have of skating by?

My suffering, even now, is minimal compared to many people that I know, my brothers and sisters in the cancer community in particular. I'm writing this post for them and their loved ones, who suffer alongside them. There are a few who are especially close to me. You know who you are. Even with all of my difficulties, I would not trade places with you. My heart breaks for you, and you are always on my mind and in my prayers.

I think of one friend who is stage 4 and going through chemo right now. He suffers every waking moment, but keeps a smile on his face. This post is for him. I think of another who has had one terrible thing after another happen in her life, and it never seems to stop. This post is for her. I think of my dad, who suffers from constant, pounding headaches all the time. This post is for him. I think of many in my support group who have it so much worse than I do. This post is for them, and many others, too numerous to mention. What all of these dear people know about suffering, I hope to never learn. But I'm sure I will.

I know that my lack of pain and symptoms will not last, unless a miracle cure is in the works. Suffering is on the horizon. And I know that my cancer has been harder on my loved ones than it's been on me. Their suffering is all too real.

While searching through scripture verses about suffering, I came across the verse from Isaiah that's pictured in the graphic above:

Though the Lord gave you adversity for food and suffering for drink, he will still be with you to teach you. You will see your teacher with your own eyes. (Isaiah 30:20)

Adversity for food and suffering for drink. Personally, I'd rather eat ice cream! But unfortunately, none of us can subsist on a diet of ice cream alone, as much as I'd like to try. Eventually, we get adversity for food, and suffering for drink. While I don't really feel that I've suffered all that much, I certainly have experienced adversity. If you've been reading this blog, you know all about it. 

This month is especially hard. My work schedule does not let up until September, in spite of everything I have to endure. Also, some very close friends of ours are moving out of town in a matter of days. That will be very hard for me.

And at the end of this month, I'll get my next PSA test that could very well prove that my current treatment is no longer working. If that happens, it's very bad news. I don't intend to pursue conventional treatment after that point. I expected to get another year out of this treatment. If the expected time I got out of it is cut in half, it means one thing; My cancer is on the move.

So all of that is hanging over my head this August. I don't think stress qualifies as suffering, and stress is mostly what I'm feeling this month. But I expect to know sorrow this month. I already have known it. Adversity will be my food and sorrow will be my drink. I just hope I can have some ice cream for dessert.

But the second part of that verse is just as true as the first. In the midst of adversity and suffering, God is with me to teach me. He uses suffering as a teaching tool. Why does he do that? It's because, most of the time, he can't get through to us when things are going well. Ask a teacher how easy it is to teach when all of the kids in class are eating ice cream. It's when adversity hits that he can get our attention. It's the whole God's 2 By 4 thing.

I haven't seen my teacher with my own eyes yet, but he is very close. The things that he is teaching me should have been obvious long ago. But he had to take away my ice cream to get me to see them. And one day, I will see him with my own eyes.

This is my advice to all who suffer, to all who know adversity. You may not think God understands or cares about your suffering, but he does. He took on human form and suffered unimaginable horror. So he knows pain, anguish, heartbreak, and adversity as well as anyone ever has. So let him teach you in the midst of your suffering. He is right there with you. He wants to show himself to you, if you'll let him.

In three days, I will mark the one year anniversary of my cancer diagnosis. It's been a year of adversity, but also a year of great blessing. The things I have learned and the love I have felt as a direct result of my adversity are so great that I would not change my diagnosis if it meant I had to give up all that I've gained. I love having my teacher with me all the time, teaching me what he wants me to learn. I can't wait to see him with my own eyes. And when I do, I know that he will have some incredible ice cream waiting for me. #waroncancer