Sunday, July 31, 2016

What I'm Afraid Of

A dear friend of mine, Miki Chambers, asked me a penetrating question this week. What am I afraid of? That's a good question for all of us to ask ourselves, and it's what I feel I should talk about today.

She wanted to know what aspects of my cancer make me afraid. I suspect that many men with prostate cancer have specific fears about it, but don't talk about their fears. That's why so many of the participants in my online support group are not the men with cancer, but their wives and daughters. The men don't want to talk about it. As you know, I don't have much trouble talking about any aspect of this disease, and how it's affected me. So I'll tell you exactly what I'm afraid of.

But first, I'll tell you what I'm not afraid of. I'm not afraid of cancer. Maybe that's because I have no symptoms. If I was wasting away and in great pain right now, I might feel differently. I admit that. This will probably sound strange to most of you, but I am comfortable with my cancer. I'm at peace with it. I expected it to come, because I'm genetically predisposed to it. Both my dad and his dad had prostate cancer. I didn't expect it to come at age 60, or be so far advanced when it was discovered, but I knew it was coming at some point. So when it came, I accepted it.

I'm not afraid of dying. Accepting my cancer means accepting the shortened life span that's likely to come from it. The main reason for this obvious. I am a Christian. I believe that if I die, I win. If I am cured, I also win. It's the ultimate win/win situation.

You see, God has made himself very real to me since my diagnosis. This morning in church, he was so real that I could hardly hold myself together. When I die, I believe I will be in his immediate presence forever. That's not something to fear. It's to be eagerly anticipated. If I believe that, how can I be afraid of death?

I'm a little nervous about my next PSA result, which will come in about a month. But I'm not afraid. If the result means that I have to change course when it comes to treatment, I'll take that in stride. And I'll be open about that part of the process every step of the way.

Miki asked if I'm afraid that, if my cancer gets worse, it will hurt. Well, I don't want to be in terrible pain, of course. Nobody would. But since I've had no pain so far, somehow it doesn't seem real to me. I know men for whom it is very real, and my heart breaks for them.

From what I have read, pain can be managed if you're not trying to extend your life. If it gets to that point for me, I won't be trying to extend it. I will opt for pain management rather than fighting for a little more time on this earth.

I don't want you to get the impression that I have no fears about this. I'm no hero. Courage has never been one of my strengths. I think it's just my nature and my faith that helps me feel this way.

I know I'm in the minority on this. Many with this disease feel great fear about their cancer, and fear of death. This is true of believers as well as non-believers. In an old post that I wrote when I was very afraid of losing disability, called Fear Not, I said that fear is an involuntary response. Here's a quote: It's literally a chemical secretion in the brain that signals danger, which is vital for survival. It's an advanced mammalian characteristic, I think. All mammals feel fear. I could be wrong, but I don't think reptiles or fish feel fear. But mice, dogs, and people do. It seems to go right along with having hair and being warm-blooded.

So fear of cancer and death are natural, and nothing to be ashamed of. My question for my brothers who do feel fear about their disease and the possibility of death is this: Do you talk to your wife or significant other about what you're afraid of? Are you vulnerable about it with anyone?

This is a problem for many men. We're supposed to be strong and silent. Stiff upper lip, and all that. But that doesn't help you or your loved ones. Real bravery is not the absence of fear. Sometimes real courage is shown in being willing to talk about what you're afraid of with those who care most about you.

I obviously don't have that problem. If I did, I wouldn't be writing this blog. I not only talk to my wife about all of this, I tell the world! Does that make me brave, or just an exhibitionist? Actually, it's neither. I do this because it's my calling. Music used to be my ministry. Now it's this. I just hope it helps someone besides me.

Here's what I am afraid of. I'm afraid of long-term side effects from treatment. I'm afraid of spending my remaining years in misery from harsh conventional treatments, and having cancer come back and get me anyway. Hence my attitude toward chemo and radiation. I'm more afraid of those things than I am of dying.

Readers of this blog know that I was very afraid of losing our Medicaid coverage a few months ago, which we did. I was afraid of being back on private insurance with a high deductible, which we now are. But God has demonstrated that he will take care of us. So that doesn't scare me now.

I was also afraid of losing coverage for my counseling, which I did. But God, through a wonderful friend, supplied that need.

As I mentioned earlier, I was very afraid of losing my disability, which I did. But again, God and some very special friends showed us that we didn't need to be afraid of that.

The biggest fear I have about all of this - that I can think of right now, anyway - is failing to provide for my wife. She has just retired from her job of 25 years. I still have some music work to do that will provide some income, but that will only take us through the first quarter of next year. In the event of my death, we have insurance, but not enough to pay off all of our debts and allow her to live comfortably.

I'm afraid of using up all of our meager retirement savings and leaving her with nothing but insurance money and a house that still has a mortgage. We don't have a car payment or credit card debt, but we do have a line of credit that will take years to pay off, if it's ever paid off. So while we're OK financially right now, and for the next several months, after that, some doors need to open for me to feel like we'll have enough to live on, and that she'll be provided for after I'm gone. That's what I'm working on now. Trying to provide those for her in the months to come. If I live, and those things turn out to be a new career path in retirement for me, so much the better.

But after what God showed me about my fears regarding disability, counseling and Medicaid, how can I not trust him for this? How many times does God have to prove himself to me before I really trust him?

In each example of fear I gave, the key phrase is but God. I was afraid of losing things that were important to me, but God showed me that I had no reason to fear. In all of the Bible, there are very few phrases that are more powerful than the phrase but God. Here are a few examples.

You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives. (Genesis 50:20)

My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever. (Psalm 73:26)

You killed the author of life, but God raised him from the dead. We are witnesses of this. (Acts 3:15)

I used to be afraid about some things, but God. I am tempted to be afraid about some other things, but God. But. God.

What am I afraid of now? Not a thing. #waroncancer

Thursday, July 28, 2016

The Elephant In The Waiting Room

When you have a medical condition, you spend a lot of time in waiting rooms. I have yet to visit one that was a fun place. I used to consider them merely boring. Maybe annoying if the TV is tuned to the wrong channel. But now, they are places of dread.

My next visit to a waiting room isn't for another month. Between now and then, I have a lot to get done. There's a show to help put on and a CD project to finish, all by the end of August. So, I won't be bored. At least I'll have things to occupy my attention.

Because, in reality, I'm spending every moment for the next month in the waiting room. My waiting room follows me wherever I go. It's always there. And there's an elephant in it that I'm trying to ignore. Not the obvious one, cancer. That's one nobody can ignore. It tramples all over everything, and it's all we can do to minimize the damage. But that's not the elephant I'm talking about.

In case you're not familiar with the expression, "the elephant in the room" is a subject that's obvious to everyone, but one that nobody wants to talk about. Cancer is a huge example of that. Even though it's taken over my life, I don't want it to be the subject of every conversation. So it's the elephant in the room. It's just that my room for the next month is a waiting room. And there's another subject besides cancer that I'm trying not to let occupy my thoughts 24/7. Another elephant.

How many elephants can you fit in a room? When you have cancer, maybe two. An adult elephant - cancer itself, and a baby elephant - whatever your next immediate concern is. My baby elephant in this waiting room where I spend all of my time is my next blood test. My next PSA number. That number will tell me everything.

As I sit in this waiting room, I try to ignore the baby elephant that keeps crashing into my field of vision. I wish its mother, cancer, would keep it out of my sight. But the cancer elephant doesn't care about me. She wants to trample me. It's just a matter of time before she does, because there's no escape from this waiting room. I'll always be waiting for my next test.

My hope is that, just over a month from now, the baby elephant will leave the room. My PSA will have gone back down, and the crisis will have been averted. I'll get a little break from the waiting room for a while.

But if not, if my number is up again, then the baby elephant grows into an adult overnight. When it matures, it will force me to make treatment decisions that I don't want to have to make.

That's why I'm glad I'll be able to keep busy for the next month. It helps to have deadlines. Deadlines have always had a great way of focusing my mind. I perform best under a deadline. I need them. Thanks to them, I won't have to pay so much attention to the elephant.

Fatigue and my emotional state still slow me down. That makes it harder to get the work done and harder to do fun things, but I have to power through. No choice. If I surrender to the things that try to hold me back, it's like I'm giving up. I'm not going to let cancer or treatment keep me from doing as much as I can. I'm not going to let the elephant trample me. Not yet.

I know I have to recognize my limits. I know I have to pace myself. From time to time, I push it too far and realize that I forgot about the elephant. That happened this week. But that's not going to stop me from doing some things that I have planned. It may be hard for me to do some things now, but it may be even harder later. So I want to do what I can while I can.

My wife and I have plans that will take the next year to complete, at least. Things we intend to do to enter our next phase of life. God willing, I'll tell you all about them when the time comes. We're hoping for the best, but planning for the worst. We're not ignoring the elephant in our waiting room.

But as we all know, while we plan, God laughs. As John Lennon once said, "Life is what happens while we're making other plans." After the last year, nobody knows that better than me. And I've learned my lesson when it comes to listening to God rather than my own ideas. If he's leading me the way I think he is, the next year or so will be full of changes and opportunities.

Until then, I'm stuck in this waiting room anticipating my next test, and trying to ignore the elephants in the room. Like I did the last time I was in an actual waiting room, I'll "check in" every few days to let you all know where I'm at. The support that comes from that is vital in this waiting room. I just wish I could change the TV channel. #waroncancer

Friday, July 22, 2016

Breaking News

Don't let the title of this post fool you. I don't have big news to report. I expect to have some news to share in a few weeks, and it will be big. My next PSA number will tell me a lot. But that won't happen until the first week of September.

Is anyone else as tired as I am of the overused term, "Breaking News?" Everything seems to qualify as Breaking News these days. It's the cable news version of crying wolf. But I digress.

What I'm talking about is something that every cancer patient has to do over and over, and it's never easy. Breaking the news that you have cancer to someone you care about. I did a lot of that in the initial months after my diagnosis. And I was made aware yesterday that the job is not finished.

I'm coming up on the one year anniversary of my diagnosis. Just a little over two weeks away. When I was diagnosed on August 7th, 2015, I kept the news private for a while. I told family and close friends. I told my church family so they could pray for me. But I didn't go public until October. As I said in an early post, I kept it close because "I didn't want to be the guy that everyone feels sorry for." I'd never been that guy, and I didn't want to be that guy.

During that two-and-a-half month period, I did a lot of one-on-one news breaking, in person and over the phone. Each conversation was a difficult one, especially considering the advanced state of my cancer when it was discovered. Nobody wanted to hear it. Nobody wanted to believe it. But I had to keep telling it.

Once I went public on Facebook, started our GoFundMe campaign, and began writing this journal on October 22nd, 2015, the news spread fast. But I still had to let some people know individually. Unbelievably, there are still people who are not on Facebook, and don't read blogs.

Over the next few months, the times when I had to break the news to someone in person or over the phone, or maybe in an email, grew fewer and fewer. The news spread organically. Friends told their friends. I began to assume that everybody I knew was aware of my illness. That belief persisted until yesterday.

Yesterday afternoon, after an emotional therapy session, I had to stop at the grocery store on my way home. As I walked up to the self-checkout, I heard a voice say, "Hi Mark!" I turned around and saw an old friend who I probably hadn't seen for 15 years. We exchanged pleasantries. She told me what was going on in her life, and asked me how I was doing.

When someone asks me how I'm doing these days, I assume they're asking how I'm feeling, or how treatment is going. So I began by asking if she knew what was going on with me. She didn't. I was very surprised by this, because she and I have many mutual friends. I'm Facebook friends with her. How could she not have heard? Somehow, she slipped through the cracks. So it was up to me to fill her in, right there in the grocery store.

I told her my story. She was taken aback, and expressed how sorry she was. She told me about a friend who had prostate cancer, had surgery, and is fine now. This was meant to encourage me. I told her that my cancer is aggressive and inoperable. We talked for a few more minutes, and said we were sure we'd see each other again soon, even though we're neighbors, and this was the first time I'd seen her in our mutual neighborhood store in 15 years.

I was already close to tears from my therapy session. I hadn't taken a 5-HTP in a day and a half, so my emotions were close to the surface. So this encounter hit me harder than it should have. As my friend walked out of the store, and I still had to ring up my items, it took me a moment to collect myself. I didn't want to break down at the self-checkout. After a heavy sigh and a few deep breaths, I managed to finish my business and drive home.

It wasn't just my emotional state that did it to me. After I got home and took a 5-HTP to calm me down, I was still reeling from that encounter. It shook me up. Two hours later, maybe more, I was still feeling the effects of that conversation.

Here's the thing. I thought I was done telling friends that I have cancer. I thought that everyone knew, and I wouldn't have to break the news to anyone else. At least not anyone who I consider a friend. It's a hard conversation to have with someone that you care about, and who cares about you. And apparently, I still have people to tell.

Retail stores are not the place for those types of conversations, but is there any good place for that topic? If you've ever been in the situation where you have to give very bad news to a lot of people, one at a time, you know how hard it is. I think of my friend Tony, and two terrible phone conversations that we've had. One where he was giving me tragic news, and another where I broke news to him that he didn't want to hear. We've both been in that boat. It's a boat that nobody wants to row.

Thankfully, the times when I have to break that news are getting farther and farther apart. But it will probably never stop for as long as I'm still here, unless a miracle cure is in the works. And it could be.

If you haven't had to take a turn in the Breaking News Boat, I hope you never do. But most of us are saddled with that responsibility at some point in our lives. And sometimes, we're blindsided by that responsibility, like I was yesterday. When you've been as public about your difficulty as I've been about mine, it's easy to be incredulous when you learn that someone you know hasn't heard. Ten months after you shouted it to the world.

News like that is hard to hear, and it's doubly hard to tell. No matter how many times you do it, it never gets any easier. I had kinda forgotten that until yesterday. Probably about the time I let my guard down again, I'll have a chance meeting with someone who hasn't heard my breaking news. And this will happen all over again. I just hope that I'm in a better place emotionally when it happens. #waroncancer

Wednesday, July 20, 2016

The Thorn In My Flesh

There are certain passages of scripture that I've heard and read for my entire life that had little meaning to me until now. This is one of them. But before I talk about it, I want to begin by thanking the amazing Nicki Morgan, the daughter that I never had, for this beautiful image. I asked her to create this piece of artwork especially for this post. Thank you, Nicki! You really need to start signing your name to these things.

The full passage that struck me when I heard it again this past Sunday in church goes like this:

Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” (2 Corinthians 12:7-9a) 

For much of my life, I struggled with being conceited. That's a struggle for any performer who's good at what they do. You get a lot of praise, and it tends to go to your head. I think I pretty much overcame conceit in my 20's and early 30's, and eventually became merely self-centered. You know, the guy who only cared about himself and his music, according to one very perceptive friend. The kind who can tell you the truth and get away with it.

The trouble with me was that I had never had any real tribulation in my life. No thorns in my flesh. I felt like I could pretty much take care of myself. And most of the time, I did. I had no experience with weakness.

A good friend of mine was recording in my studio a few years ago, and I expressed an insensitive opinion about someone that I won't share here. She laughed, and said, "Oh, Mark, you need more challenge in your life." Boy, was she right.

You know what I'm going to say next. Long time readers, say it along with me. Then, I got hit by God's 2 By 4. To quote the Apostle Paul, I was given a thorn in my flesh. I was made weak, and unable to take care of myself the way I used to. And it changed my perspective for good.

Paul says that he was given his thorn. But he doesn't say who gave it, or what it was. But I will, at least when it comes to my thorn, cancer. First, let me say that I don't think the devil gave me cancer. I don't regard my cancer as a "messenger from Satan." Messengers from Satan don't reveal the truth of God the way my cancer has made God so real to me.

So am I saying that I believe that God caused my cancer? Yes and no. No, I don't think that God decided one day that he'd had enough of my big head, and gave me cancer to teach me a lesson. My cancer was caused by one thing, which I discussed in an early post last November; Genetics. I have prostate cancer because my father and his father both had it. No other reason.

Of course, I believe that God created all life, including DNA and our genetic code. So ultimately, he is responsible. He could have stopped me from getting cancer if he had chosen to do so. He could cure me now if he chose to do so. 

But I'm not asking him for that, though many have, and continue to do on my behalf. Unlike Paul, I'm not asking God to remove the thorn from my flesh. I'm too busy being amazed at the way his power is being made perfect in my weakness.

While I don't believe that God gave me cancer in order to get me to depend on him, or to get me to care more about others and less about myself, he certainly has used it to do those things and more. Many continue to ask God to remove my thorn, but God keeps showing me that his grace is sufficient for me. And it's so much more than merely sufficient. It's overwhelming.

I have made friends with weakness. It's my daily companion. I have to account for it in everything I try to do. It slows me down, but it hasn't stopped me from doing the things I love. Maybe one day soon, it will. But for now, God's strength is being made perfect in my weakness. Or as another translation puts it, his power works best in weakness. (NLT) I like that translation better. God's power is perfect whether we're weak or strong. But when we think we're strong, we don't allow his power to work in our lives. It's when we're forced to confront our own weakness that our need for God is apparent to us. At least, that's been true in my case. I don't think I'm alone in that. If I was, this passage would not have been written 2,000 years ago.

I don't know what the thorn in your flesh is. It may not be cancer, though for many, it is. It may be another illness or disability, for you or a loved one. It may be depression. It may be a compulsion, or a toxic relationship, or any one of a million other things. Or you may not have one that you're aware of. I didn't for many years. But one day, you will, like I did. We're all subject to the same human frailties. I only hope that, in your difficulty, God makes himself as real to you as he has to me. I hope that his power works best in your weakness.

Well, this post has turned out to be an all-out Bible lesson, hasn't it? I'm sorry if this post hasn't been your cup of tea. If it isn't, you probably haven't read this far. But I've felt strongly since Sunday that this is what I should write about next. I think there are some who need to hear this today. Whoever you are, this post is for you. So let me close the same way I began; with scripture. The rest of the passage I'm quoting today goes like this:

Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. (2 Corinthians 12:9b-10)

I can't really say that I delight in my weaknesses, hardships, or difficulties. Thank God, I haven't experienced much in the way of insults and persecutions. But I am at peace with weakness, hardship, and difficulty. Because of those things, I've experienced blessing unlike anything I've ever known. As Paul said, Christ's power has rested on me.

If you've been praying that God would remove this thorn from my flesh, thank you! Please keep right on asking him for that. I never have, and I don't think I ever will. Because I thought I was strong before, and now I'm learning what real strength is. For when I am weak, then I am strong. #waroncancer

Saturday, July 16, 2016

Feeling Helpless

Yesterday, we had a sudden hail storm at our house in Denver, Colorado. It was the first time that I can remember since we've lived in this house that we had ping pong ball sized hail. I picked up a few samples for this picture.

Most of it was marble sized, but I found these on our patio afterwards without too much effort. I don't think we have any serious damage, but the emotional toll on me was awful, and I'm still feeling it now.

While the storm was going on and on and on, it was all I could do to keep from running around our house, screaming, cursing, and crying. Yes, I was worried about potential damage from the storm, but it was more than that. I felt helpless. There was nothing I could do but wait for the storm to be over, and wonder what would be left in its aftermath.

I could blame my emotional reaction on hormone treatment, and I'm sure that played a significant role, but it was more than that. In my mind, the storm outside our house reflected the storm in our lives for the past year. My helplessness in the face of the hail storm shined a light on my helplessness in the face of the biggest storm I've faced in my life; cancer. And my feeling of helplessness while waiting for the hail storm to pass was merely a reflection of my feeling of helplessness in the face of The Big C.

That's the flip side of loss of control over circumstances in my life. I've often written about the peace I've experienced since realizing that I don't have control. Most of the time, I embrace that. But today, that loss of control leaves me feeling helpless.

There wasn't a thing I could do to stop the hail yesterday. There isn't a thing I can do to control my PSA number, either. We're already doing what we can about that, and it may not be enough. Long term, it definitely won't be enough. Lupron won't keep my number down forever. It may have already stopped doing that. So I feel helpless.

Now, when I look at the mess that was made of our yard and patio from the storm, it makes me want to cry. The energy that it will take to clean it up is more than I have to give, which is discouraging. I'm afraid to have our roof inspected. Any damage will cost more than we can afford to pay, even with insurance.

Likewise, now that we have private health insurance with a high deductible, certain treatments to try to mitigate the damage cancer has inflicted on my body seem out of reach. On some days, I feel relatively normal, and have the energy to fight, and to do things that I want to do. On days like today, I don't. I feel helpless on both fronts.

Of course, I know that I'm not actually helpless, helpless meaning without help. We have had a lot of help, and continue to receive help and encouragement from many. I'm mindful of the fact that I had a roof over my head during the storm yesterday, when I'm sure there were those who did not. If we need financial help, I know there are those who will give it to us. This is a great blessing that we don't take for granted.

But for all of my raging against the storm yesterday, I couldn't keep it from coming. Once it started, I couldn't make it stop. The same is true of my cancer. I couldn't keep it from coming, and I can't make it stop. That makes me feel helpless.

None of us can stop the storms of life from coming. But we can learn where to go for shelter. For refuge. I'm glad that we weren't out eating dinner somewhere yesterday when the storm hit. If we had been, our damage would have been worse. Maybe much worse. But we were at home, so we could mitigate the damage to our garden, keep our cars in the garage, and stay inside. We had shelter. We had a refuge.

When the cancer storm hit almost a year ago, we had our family, our friends, and our God to turn to for refuge and shelter. My wife and I have huddled together for warmth inside this shelter since the storm hit. No amount of screaming or crying will stop the storm, but we are grateful for the shelter that we have, thanks to God. Thanks to you.

Whoever dwells in the shelter of the Most High
    will rest in the shadow of the Almighty.

I will say of the Lord, “He is my refuge and my fortress,
    my God, in whom I trust.”
(Psalm 91:1-2)

Shelter does not keep the storm from coming, but it mitigates the damage. I still feel helpless, but I know we are not without help. #waroncancer

Wednesday, July 13, 2016

Wait And See

Since my last post was titled Questions, I was hoping to title this one, "Answers." But I got no definitive answers yesterday. Just a troubling "wait and see."

My last PSA result was 1.42 back in March. I was expecting that the number would stay the same or be lower. Since I started on the hormone suppressant Lupron, my PSA has gone down steadily, and by large increments. From 15.8 when I was diagnosed to 4.0 three months after my first shot. Then down to 1.42 last March.

Since I still have my prostate, my PSA number will never be zero. But I thought it could go lower than 1.42. That had been the trend. While I knew that it was possible that my PSA could rise, I didn't expect that it would. Or if it did, that it would prove something one way or the other. But I didn't get a definitive answer either way. Here's what I got.

My PSA has risen from 1.42 to 1.97. Not enough to cause real concern yet, but it's going in the wrong direction. My oncologist thinks that it could be normal fluctuation due to the fact that I still have my prostate. My prostate is still producing the PSA protein, and always will. That's why my number will never be zero. I'm hopeful that's all it is.

But if my next number is higher than 1.97, that spells trouble. It means Lupron is no longer working. Since my cancer is very aggressive, they only expected Lupron to be effective for me for about eighteen months to two years. If it's already losing effect, I only got a year out of it. That would not be good news.

As a result, we're in wait-and-see mode. My next shot is scheduled for September 6th. If you've been following along, you know that I intended to ask my oncologist about delaying that shot. Now, that may be a moot point. If my next result is higher, I've probably had my last Lupron shot. Not that I'll miss Lupron!

There are other treatment options available, but there's a reason that Lupron is the first choice. If Lupron loses effect for me after only a year, that doesn't bode well for other standard treatments in my case.

But I'm not going down that road very far just yet. As Jesus said, Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. (Matthew 6:34)

If my next result stays the same or goes back down a bit, it means that my number is fluctuating normally. In that case, my oncologist approved of my idea to delay my next shot and simply test every two months to see what happens. But if it goes up again, that goes out the window. In that case, we need a new strategy.

The whole idea of waiting and testing at regular intervals was to try to prove whether or not I still have cancer. If my next number is higher, I will have my proof, and it isn't the proof I'm looking for.

The news hit me harder than I expected yesterday. I really didn't expect the number to rise. Not at all. I'm supposed to get more time from my current treatment. So I was emotional afterwards, and I still am now. But not from the news alone.

While I was waiting in the reception area of my oncologist's office yesterday, I considered "checking in" on Facebook. I've never really done that before. I don't like the idea of telling the world where I am. I always feel like I'm announcing to every burglar in town that I'm not at home. But I got my phone out, went on Facebook, and started to do it anyway. But then I hesitated. I didn't feel comfortable. I put my phone back in my pocket.

A couple of minutes later, I reconsidered. But as I started the process again, I hesitated again. Put my phone away again. Finally, I got past my hesitation and checked in at Porter Cancer Care in Denver, Colorado. I wrote a simple status update that many of you have seen by now. Feeling nervous. "Waiting to see my oncologist. Hoping for good numbers!"

Once the deed was done, I waited for about another 30 minutes to see the doctor. And while I waited, the likes and comments came pouring in. Over 150 likes and 70 comments. Unless you've been there, you'll never know how much that helped me while I waited. It still helps to look at it now. I'm so glad I went ahead with it.

In addition, I've gotten several texts, calls, and messages from dear friends. One in particular was on pins and needles waiting for PSA results from someone she's never met, while her husband was going into surgery the next day. If my wife was having surgery this morning, that's all I would have been thinking about yesterday. But this dear lady was worried about me. To me, that's amazing.

Since my appointment, I've been close to tears. Some of that emotion is due to being shaken a bit by the news. But most of it is gratitude for the love and support. The more of it that I receive, the less I feel I deserve it. But it just keeps coming. And it inspires me to redouble my prayers for all of my cancer brothers and sisters. I pray without ceasing for all of you today! Prayer and tears go good together. Like holy mashed potatoes and gravy.

So I didn't get the answer I was hoping for yesterday in either direction. But I did get encouragement, love, and support. And thanks to you, that will get me through to my next test and beyond. #waroncancer

Saturday, July 9, 2016


This Tuesday, July 12th, I have the appointment with my oncologist that was delayed from last month due to losing my insurance coverage. I got my blood drawn yesterday in advance of Tuesday's appointment. I have some questions to ask of my oncologist when I see him. Assuming that all is well with my numbers, that is. If not, that will change the conversation.

My next Lupron shot is not scheduled until September 1st. So we don't expect my PSA or other cancer related numbers to rise. But you never know with prostate cancer. I'm willing to admit that I'm a little nervous. When you have prostate cancer, you get tested at regular intervals for the rest of your life, even if you no longer have your prostate. And every time, you get nervous. Even if you've been declared "cancer free," it can always come back.

The Lupron that's still in my system should prevent my PSA from rising, but my cancer is very aggressive. If there were no reason to be watchful, I wouldn't be getting tested again until just before my next shot in September. So I'm a little nervous. Not much, just a little.

My last PSA result was 1.42. That's down from 4.00 previously, and 15.8 when I was diagnosed. Anything above 4.00 is considered abnormal. My number will never be zero due to the fact that I still have my prostate, and I'm inoperable. But as long as it doesn't rise, it means that the cancer isn't growing. When my PSA starts rising again, it means Lupron is no longer working, and we have to find another strategy.

The purpose of this consultation with my oncologist is to decide on a strategy. The last time I saw him, he wisely thought it would be good to wait a few months, think about it, get as much information as I can, and decide what I'd like to do. I'm glad that we took this time, because I was not ready to decide on these things in March. I have a firm idea now of what I'd like to do, but I want to talk to him about it first.

At my last appointment in March, when I got my last shot, my oncologist referred me to a radiation oncologist to check into possible radiation treatment. But from what I've heard from those who have had radiation treatment, I'm reluctant to do that. The doctor I saw wants me to have the new so-called "prostate only" radiation procedure. They say that they can confine the radiation treatment to just that area, without radiating everything down there. He claims that the long term side effects that are associated with the old "whole pelvis" procedure are almost nonexistent with this newer procedure. He holds it out as a cure that would give me a normal life span.

The problem for me is, it sounds too good to be true. I've looked into it, and can't find any long term statistics about side effects from that procedure. I've asked about it in the online support groups that I frequent, but no one in those groups has had it done longer ago than the last year or two. Nobody can tell me what my quality of life is likely to be 10 to 20 years from now if I have it done. I'm not interested in being anyone's guinea pig. The problem with radiation, for me, is that it's so permanent.

Which leads me to my first question for my oncologist. If this procedure is so effective, and so non-invasive, and so free of long term side effects, if it's really a cure, why isn't it the standard procedure for everyone? Why is anyone getting surgery if they have this option?

If his answer satisfies me, my thought is that I'd like to hold that option in reserve. Maybe we can come up with test result numbers that show a point of no return. If I hit a certain number, then we have to opt for this procedure. I'd like to know what he'd think of a strategy like that. Maybe by the time I'd hit the magic number, there will be statistics that satisfy me.

But I have reason to believe that I may no longer have cancer. For one thing, I no longer struggle to keep my weight up. I'm staying at my normal weight without adding calories to my diet. I'm back to eating like I always have, and I'm not losing weight. I'll ask him about that.

And as I've talked about before, I have had many people praying for my healing for months. While I am not expecting God to heal me, I believe that he can if he so chooses. I'm fine with whatever God wants to do, but I want to find out if I'm healed. If I am, I don't want another Lupron shot. Which leads me to my main question for my oncologist.

Here's what I'd like to do. Assuming my PSA has not risen, I'd like his clearance to delay my next shot and go on what's called Active Surveillance. That means getting tested at regular intervals that the doctor would prescribe. If my PSA and other numbers don't rise over a period of time that he would agree to, then I'd get another biopsy to prove whether or not I still have cancer.

I don't want to just keep getting shots, assuming that the cancer is still there, and being satisfied that my numbers stay low. They might be staying low because I'm cured. This may sound like false hope to you, and maybe it is. But I want to know for sure. I just want my oncologist to sign off on that strategy. If he tells me it's too big a risk, I'll factor that into my decision. I have until September to decide.

Of course, if my PSA is higher than 1.42 when my results come in, all of those questions are moot. There will be a whole series of new questions that I can't even think of right now. But I'll cross that bridge if and when I come to it.

But I'm not just asking questions on Tuesday. Tomorrow, in church, I'm answering a few. My pastor is preaching on Psalm 121. That psalm begins with these words, which are familiar to many:

I lift up my eyes to the mountains—
    where does my help come from?

My help comes from the Lord,
    the Maker of heaven and earth.

Until he explained it to me, I never knew that "the mountains," or "the hills," as many of us are used to hearing, were where the pagan temples were in ancient Israel. What the Psalmist is saying in these verses is that we should not be looking to anyone other than the Lord for our help. If you've read my last post, Being There, you've read that he's the one who's really been "there for me." Unlike many people who say so, he really wants me to tell him if I need anything. Many of you have been there for me, and I'm grateful to all of you. But while I look to you for encouragement, friendship, and support, I know where my real help comes from. It comes from the Lord, the maker of heaven and earth.

My pastor intends to bring me up front tomorrow morning and ask me three questions. He sent them to me early, so I could think about them. I sent him my intended responses this morning. I've already gone on too long in this post, as usual, so I won't share everything he asked or that I answered. I'll just share this. If you want to hear the rest, come to All Saints tomorrow at 11:00 AM!

He asked why I think I have what he called a "counterintuitive peace" about my cancer. My answer is that I don't think the peace I have is counterintuitive at all. In my journey, I've seen several others with this same peace. As a believer, I'd like to think that those who feel the way I do must have the same beliefs that I have, but that isn't true. One of the most eloquent statements on the subject that I've seen came from a prostate cancer patient who believes that this life is all there is. But he's at peace. Each time I read what he wrote about it, what he said resonates with me in a big way. One day I intend to base an entire post on his words. But not yet. Maybe soon, if I get the wrong answers from my oncologist.

I could point to circumstances in my life and say that if A or B were different, maybe I'd be in the "fight" camp rather than the "accept" camp. But I'm not sure that's even true. I think it might just be my nature. No one can say how they will react when their life is threatened. It's certainly not that I was especially spiritual before my diagnosis, and that helped me take it well. Just the opposite is true. This is the first real hardship that I've experienced in my life. I now understand that peace is found when I surrender control. I was only able to do that when I had no choice.

Finally, he asked what gives me hope. Love gives me hope. The love that I continue to receive from so many gives me hope. The love that I feel so intensely for those of you who have been there for me gives me hope.

But most of all, the fact that God is so real to me now gives me hope. The fact that I can barely think about how good he is to me without breaking down in tears of joy brings me hope.

I have questions, but thank God, I also have some answers. And the answers make the questions seem trivial. No matter what the doctor says, and no matter what God decides to do, I am at peace. And I have hope because of love. #waroncancer

Monday, July 4, 2016

Being There

Someone said something to me this past weekend that was meant as a statement of support. But I know he didn't mean it, because he hasn't lived up to it yet. Not once. He started by repeating the old line that I've heard from so many since I was diagnosed with cancer, "If there's anything I can do, let me know." As if I would ask someone that I have very little relationship with to do some major favor for me now. I'll repeat here what I said in a previous post, What Not To Say To A Prostate Cancer Patient. Saying that to anyone going through hard times is not helpful. We're not going to ask you for what we need unless we're very close. Maybe not even then.

Here's what you should say. Ask if there's anything you can do. Ask how you can help. If you know of a need, volunteer to meet that need. But don't tell us to let you know if we need anything. We won't.

But that's not what really bothered me about what he said. He followed that platitude by saying that he's "there for me." Really? Not that I've seen. On the list of people that I'd expect to be there for me, he's pretty near the bottom.

I've been guilty of this myself. I've never used those words with someone unless I felt very close to them and really wanted to help. But I've told plenty of people that I'd pray for them, and never did. That's just as bad. Maybe worse. It's another way of pretending to care. I used to pretend a lot before I became the victim by the side of the road, waiting for someone to be a neighbor to me. Before I got hit by God's 2 By 4. Now I really do want to help those I love. It's amazing how cancer changes your perspective.

I'm tempted to start making a list of those who have been there for me, but that would take all day. The list is long, and I'm very thankful for all of you. Cancer is bad, but The Love Part's great. I've never felt more loved and supported in my life. You are the people who've really been there for me, and continue to be.

Instead, I'll talk a little bit about what being there really is.

It's being there with emotional support. Not platitudes, but listening. A supportive call, email, message or text does wonders. Don't just ask how we're doing when you happen to see a friend in need. Call out of the blue. Send an unsolicited card, letter, email or text. Engage us in conversation. Talking really helps.

This is just as important for the spouse of a patient as it is for the patient themselves. Often the spouse is overlooked in this situation. Many want to support the patient, but few understand how much more difficult a situation like this is for the spouse. They need support too. They need someone to talk to. Be there for them.

It's being there in prayer. For people of faith, nothing has greater value. Yesterday, a large group of young people, most of whom don't know me personally, posted a short video where they said that they love me and are praying for me. If we are Facebook friends, you can see it on my timeline. Maybe you already have. It's impossible for me to describe what that meant to me. That's being there.

A small gift, just a token, can make a huge difference. A wonderful new friend recently gave me a stone that says, "Health" on one side. I carry it in my pocket at all times. It's a huge encouragement to me. I'm struggling today emotionally because I can't find it. Not because of what one thoughtless person said to me, but because my Health stone is not in my pocket, and I don't know where it is. If and when I find it, I'll feel much better.

It's not that I believe that the stone has any special powers. But it was a gift given out of love from someone who has been there for me. It's special for that reason. I could get another stone, and if I don't find the one I was given, I will. But I don't want another stone. I want that one. It's hard to explain.

My point is that it doesn't take a lot to show that you really care. It doesn't take that much to be there for someone. Just a little effort.

We can't all give large financial gifts or pitch in when help is really needed. But we can be there in other ways. I have been overwhelmed at times by the number of people who have been there in ways that they would consider small, but to me, they were huge. I'll never be able to thank you enough for being there.

But one has been there for me more than all others put together. Of course, my wife, whom you've all read about by now! Maybe I'll just write about her from now on. It seems like I'll get more readers that way. Not that I can blame you. But she's not the one I'm talking about.

A week ago in church, our pastor asked us to meditate on one thought for a few minutes. "What great love the Father has lavished on us." (1 John 3:1) His point was that we should focus on that thought for two or three minutes, and not let ourselves be distracted. But I couldn't focus on that thought for very long. Not because I was distracted, but because if I focused on how God has showered his love upon me for more than a few seconds, I would break down sobbing. I didn't want to do that in church, so I had to "look away" from that thought every few seconds. It was just too much to bear.

Because he's been there for me in ways that I can't calculate, let alone describe. He's always there. Of course, I know that's been the case for my whole life, but it's only been this real to me since he got my attention. Now his presence is so real, so present, that I can barely think about it.

I really can let him know where there's something I need. He doesn't just say that to make himself feel better. He wants me to tell him what I need, even though he knows what I need before I ask. He really is there for me.

And that's the real reason to be there for those we love. Because in doing so, we are like him. #waroncancer