Thursday, September 29, 2016

Next Steps

I began what I regard as the next phase of my treatment today. I took my first four Xtandi capsules this morning. The bottle of large capsules, which I would call "horse pills," arrived last Friday, but I was concerned about a potential side effect which was listed in the literature that came with the bottle. So I set up a consultation with a nurse practitioner in my oncologist's office to discuss my concerns before I started taking them. That appointment was yesterday morning.

To review, Xtandi is a testosterone blocker. It's supposed to help Lupron hold my PSA down, and get my cancer back under control for a while. The side effect that I was concerned about was the possibility of seizures, which is listed very prominently in the brochure. Here is a quote:

Xtandi may cause serious side effects including seizure. If you take Xtandi, you may be at risk of having a seizure. Avoid activities where losing consciousness could seriously harm you or someone else.

Avoid activities where losing consciousness could seriously harm me or someone else? Like driving? As I read that warning on Friday, my wife and I were getting ready to visit friends in Breckenridge, Colorado, which is in the mountains, about 90 minutes away from where we live. Visions of having a seizure while driving on a winding mountain road with my wife in the car started dancing in my head.

This would not do. I called my oncologist's office, and talked with someone who couldn't answer all of my questions. So I made an appointment to go to their offices yesterday and talk with a nurse practitioner. She assured me that I was not at risk for seizures from this medication. It's those who have a history of seizures, or those with brain injuries who are at risk.

That was the second of two medical appointments I had yesterday morning. The first was with a dental hygenist. It took place in the radiation oncology office where I've consulted about radiation treatment twice, and where I met a nutritionist months ago when I was having trouble keeping my weight up. As I've mentioned before, my oncologist wants to put me on a bone-strengthening drug called Xvega. But they need to make sure I'm in good dental health before they start me on it.

It's not surprising that I put off finding a dentist. I hate going to the dentist so much that I'll procrastinate looking for one even when my life depends on it. So the doctors took matters into their own hands. They set up an exam right there in the office, and found a dentist for me. They want me to get a cleaning and take care of any problems that might exist before I start with Xgeva.

The hygenist found a small place where part of a filling is missing, so I know I'll need to get that done. I just hope there isn't any more than that. I made an appointment with the dentist for this coming Tuesday.

When I walked into the office for the dental exam, the receptionist called me by name. She may have had my name in front of her, since I had an appointment at that time, but I've had a friendly relationship with this receptionist for a while, because I've stopped in there a few times in an effort to take some of my ice cream to the nutritionist who helped me gain back the weight I lost. But still, I was surprised to hear her volunteer my name without needing to ask.

My appointment with the nurse practitioner was after this one, in the same medical building, but on a different floor. This is the oncology office I visit most frequently. As soon as I entered and began to sign in, the lady at the front desk simply pulled my chart and started logging me in. She didn't need to ask my name or birth date. Is it a good thing when you're so well known at two cancer treatment centers? On the one hand, yes, it's good to have personal relationships with your medical team. But on the other, I'd much rather be well known at a record label.

The assurances I received from the nurse practitioner regarding side effects from Xtandi was not the only reason I was motivated to start taking it today, without further delay. At the end of our conversation, she asked if I wanted the results from my last blood draw. You may remember that my oncologist wanted a baseline test before I start taking Xtandi, so we know where we're starting.

The two blood draws I had prior to this one showed my PSA rising. The first rise was from 1.42 to 1.97, an increase of five tenths of a point in five months. My next test result, on August 31st, was 2.7; up seven tenths of a point in six weeks. That was what motivated my oncologist to order the bone scan that confirmed my metastasis.

So when the nurse practitioner asked if I wanted to know the result of my blood draw last Friday, of course I said yes. It's 4.77; up more than two full points in four weeks. So I'm taking my pills. I only hope they drive that number back down some, and keep it from continuing to grow at an exponential rate. I really hope that, when I have my next blood draw in about six weeks, I'll have better news for you.

My main motivation to agree to these treatments that I am predisposed to distrust is not simply to save my own skin. I don't believe that's possible at this point. I'm doing these things to try to get a little more time. I'm doing them for my loved ones.

That trip to Breckenridge last weekend that I mentioned above was a long-anticipated trip to visit close friends, and be there for their house warming party. Our friends had moved there a month earlier. Other good friends of ours were there as well, and a couple of new friendships were established. It was a wonderful time. It was soul-nourishing on many levels.

We stayed over Saturday night, and had breakfast at the new home of our dear friends. I suspected that they had not heard my most recent news, so I felt obligated to tell them about my prognosis. I'm afraid I broke someone's heart yet again. Tears were shed.

It's for people like this that I do what I'm doing. I'm not taking these horse pills for me. I'm certainly not going to the dentist for me. Once I'm cleared by the dentist, I won't be getting an injection once a month to strengthen my bones for me. I do these things for my wife. I do them for my family. I do them for the one I made cry on Sunday morning. I do them for the loved one who visited on Monday, and for everyone else who wants to know that I'm not giving up. It may not seem like it to you, but I'm fighting this. But I'm not doing it for me, I'm doing it for you.

These are the next steps in my treatment. There will be more, and I'll tell you about all of them. Sometimes, to me, these things seem like trying to hold back the tide. The tide will come in, no matter how much I try to hold it back. But I want to spend as much time on the beach with you as I can before that happens. #waroncancer

Monday, September 26, 2016

Choosing My Battles

After my last post, I was asked two valid questions that should be addressed. One question was about my diet. The other asked how my wife felt about my treatment choices. I'll try to answer both of these questions in this post. As it turns out, the two questions are related.

Part of me wants to think I shouldn't have to explain myself, or defend choices I make regarding my own health. But I've committed to being as open about this entire process as I can be. I hope that if I share my thought process on all of these things, maybe it will be easier for you to understand and support my conclusions.

In my last post, I may have misled some of you into thinking I'm refusing treatment. I'm not. I'm still on hormone treatment, and will be for the rest of my life. Oh, joy. I'm getting a dental exam on Wednesday to determine whether I can start taking a bone-strengthening drug once a month. And once my doctors assure me to my satisfaction that I'll escape a certain side effect, I expect to start taking the testosterone blocker Xtandi. I may have made a mistake using the word treatment too many times when I should have used the word chemo. It's chemo that I don't have time to take months off for right now, not treatment as a whole.

In my last post, I said that I wasn't going to do "radical lifestyle or diet change." One person asked me about that, saying he supported my decision not to do chemo, but didn't understand why I wouldn't eat a healthy diet. I realized that I haven't talked about my diet much in this blog. Diet is very important, as we all know. I personally believe that the reason we have so much cancer in Western societies is because of our diet. We eat way too much processed food. So I am sympathetic to those who say that we should eat in certain ways to avoid and defeat cancer.

But my cancer was not caused by outside factors. I have prostate cancer because it runs in my family. It wasn't because of any poor lifestyle choices on my part. It was just the luck of the draw, or the lack thereof.

My wife and I are very health conscious. We eat a very healthy diet. My wife has not eaten beef since the 1980's, and I became unable to eat beef after a few years of that myself, since she stopped cooking it at home. I'm reminded of a line from Pulp Fiction where Samuel L. Jackson's character says, "My girlfriend's a vegetarian, which basically makes me one." That's pretty much how it works.

If you don't eat beef, you lose the enzymes in your digestive system that break beef down. If I eat a hamburger after a certain time of day, I can't sleep that night. But recently, I've started gradually reintroducing beef into my diet so I can have a hamburger when the situation calls for it. If I have a burger once every two or three months, that's a lot for me. I still eat very little beef.

We eat a lot of salads. We eat organic as much as we can. We use filtered water for everything, to the point of having a water filter on our shower, because everything that goes on your skin gets absorbed into your body. Instead of using commercial ammonia-based window cleaners, I use a combination of vinegar and water. It works great. We never heat food in plastic, or use Teflon, because it transfers plastic molecules into food, which causes cancer. I don't spray my lawn with chemicals to kill weeds, because I don't believe in putting poisons in the ground water to make my lawn look prettier.

I could keep going, but I won't. You get the picture. When I talk about not wanting to do radical lifestyle or diet change, bear in mind that we already take measures to remain healthy that many do not.

But we do eat meat. We eat poultry and seafood. Pork occasionally. I'll have two thin slices of bacon with breakfast about twice a week. We always try to go with wild-caught seafood, rather than farm-raised. We eat a lot of chicken, and we also eat turkey throughout the year.

There's lots of information promoting various special diets to fight cancer. If I were younger, and in a different place in life, I might consider one of those. But at this point in my life, I'm not going vegan. I'm not giving up meat or dairy. It's a little difficult to go vegan when you're going into the ice cream business. I'm the chief taste tester around here.

One weakness I have is for sweets. That's a change I'm willing to make. I can live without candy if I have to. I cut sugar out of my diet once before, and I can do it again. That's hard to do just before Halloween and Christmas, but I can do it. I still need to make and consume a few more batches of my chocolate ice cream to get the recipe right, but after that, I can back off the ice cream binge I've been on.

When I was struggling to keep my weight up, some of the rules of healthy eating I had adopted went out the window. Keeping my weight up was more important than watching my sugar intake. But my weight is not a problem for now, so maybe this gives me an opportunity to get back on the wagon when it comes to sugar.

The trouble is, while I agree that I should have healthy eating habits and eat mindfully, I don't really believe that giving up the moderate amounts of "bad" food I eat will make much difference in how long I live. I'm afraid if I went on a special plant-based diet, and gave up so many of the foods I love, all I'd be doing is making my limited remaining time here less enjoyable. I want my coffee in the morning. I want my one beer each night. That's not what will kill me. I know exactly what will kill me. In some ways, that's liberating.

So when it comes to diet, I will continue to eat the same healthy way that I have for decades. You won't see me anywhere near a corn dog or a bucket of KFC. But I will continue to eat eggs, cheese, bread, and once in a while, even a microwave popcorn. So sue me.

I haven't even gotten to the second question yet. I'll try to make this part brief. One dear lady asked how my wife feels about my not doing chemo. Her husband has prostate cancer, and she wants him to do everything he can to stay here for as long as he can. Very understandable. I think she may have gotten the impression that I'm refusing all treatment. It's only chemo that I'm refusing at this point.

I don't think my oncologist is recommending chemo for me presently anyway. In the literature for Xtandi, which I received last Friday, a study was highlighted which showed that Xtandi delayed the time before patients began chemotherapy, from 11 months to 28 months, on average. That tells me that the purpose of Xtandi is to enable prostate cancer patients like me to put off the day when chemo is recommended.

Having said that, the decision to submit to chemotherapy or not is a personal one. It's a choice I wouldn't make without my wife's support.

In the early days of my cancer journey, I was talking with a pastor friend of mine. I told him about a cancer patient who was told she only had a few months to live unless she did chemo. She refused, and said something that made a big impression on me. I tell this story in my post, "My Complicated History With Divine Healing." She said, "God's either gonna heal me, or he's not. I'm OK either way." I came away from that hoping that I would have the same attitude were I ever in that situation.

It turned out that I did have that attitude when the time came. When I related this story to my pastor friend, he said, "That's a great attitude, Mark. As long as your wife is there with you." That gave me pause. It was wise counsel, and what he said should have been obvious to me before he said it. I knew I needed to have a conversation with her right away.

That same night, or maybe the next, I sat down with my wife and told her that, if she wanted me to, I would go through every treatment they threw at me to stay here for her for as long as I could. She said she didn't want me to suffer from treatment. She's always been the more heath conscious of us. Almost every health measure I described above in our household was started by her. She hates the idea of pumping poison into my body, knowing what it would put me through, physically. She shares my suspicion of the pharmaceutical industry and the for-profit health care system.

Initially, she wanted me to undergo radiation treatment. But now that we know radiation probably would not have stopped me from being Stage 4, we're both glad I didn't do that. My wife supports the treatment choices I'm making, and she supports my decision not to start chemotherapy.

I didn't intend for this to happen, but looking over this post, I now realize it's a tribute to my wife. She's the one who got me eating healthy years ago. She's the one who reads the health news while I obsess over sports and politics. She knows how healthy my diet is, and doesn't expect me to upend our whole lifestyle in what I believe would be a vain effort to add a little more time.

We're choosing our battles. I support every one of my cancer brothers and sisters who make their choices about how to battle this disease. I hope you support me in mine. I know my wife does. #waroncancer

Friday, September 23, 2016

A Sense Of Urgency

This familiar poem by Robert Frost has great meaning for me now. At this point in my life, I feel that I have promises to keep. Months ago, I fervently wished that I could simply stop working and devote all of my attention to my illness. I thought it unfair that others could do this, but I had to keep working. But I don't feel that way anymore. Now, the limited time I've been given fills me with a sense of urgency. There are tasks that must be completed while I still have time. There are goals I want to meet. I have promises to keep, and miles to go before I sleep.

I've talked in this blog about having a legacy to protect, and about wanting to finish well. I think it's time to explain what I mean by that. It's time to spell it out for you, rather than talk in generalities. This will help you know how to pray for me specifically, if you are so inclined.

But first, I want to address my prognosis again; or rather, my reaction to it. I think some of you may have the impression that I simply take my oncologist's word as gospel, and that I have a fatalistic attitude. Nothing could be further from the truth. I don't believe in fate, I believe in a personal God who lets us make our own choices. I believe God has placed me here for a purpose. I can choose to be angry at God for my circumstances, or I can choose to do my best to fulfill his purpose for me. I choose the latter.

I don't want to derail this post by getting too far into this subject. That will be for another post. I'll just briefly try to explain why I accept this prognosis. First, ever since I was first diagnosed, my nature has been to accept my cancer rather than fight. Most cancer patients are fighters, but a few accept. I just happened to fall into the "accept" camp rather than the "fight" camp.

Second, I've had a strong feeling from early on in this process that I have about two years. So when I received a prognosis to that effect, it came as no surprise. I've learned to trust my feelings since this started. I could be wrong, and so could my oncologist. But I don't feel like he is wrong, or that I am.

Third, there are the statistics. The numbers don't lie. There are exceptions to every rule, but everybody doesn't get to be the exception. If they did, the exception would become the rule. I believe in miracles, but I'm not counting on one.

And fourth, I am unwilling to do some of the things that claim to prolong life for people in my circumstance. I won't do chemo. I won't do radical lifestyle or diet change. My priority is not living longer, it's getting my work done. It's trying my best to set my wife up financially while I can, because I haven't done that very well so far. It's doing what I can, while I can. That's what the rest of 2016 and all of 2017 will be about for me, God willing.

While I understand that my doctor may be wrong, and I could end up living much longer than he predicts, I think it would be very unwise for me to disregard what he says. If I spend the next year and a half doing all of these things that may or may not extend my life, and it doesn't work, I will die with regrets. I'll look back from my death bed and wish I had pursued my passions, and answered God's call on my life. I'd rather die sooner and feel like I've done all I could than live longer and die with unfinished business.

I'm an NFL football fan, and this being football season, I can't help but see this in those terms. When a team is 14 points behind with five minutes remaining in the game, if they want to have a chance of winning, they start to play with a sense of urgency. They go into the "hurry up offense." They throw the ball more, and try to get out of bounds to stop the clock. If they don't have that sense of urgency, they'll probably lose. That's how I feel. It's late in the fourth quarter, and I'm way behind. I've got to put some points on the board before the clock runs out. So I have a sense of urgency.

I hesitate to give you my actual to-do list, for fear that some of it may seem frivolous, or a pipe dream. But all of these things are very important to me. If I don't get all of these done, I will regret it.

I have a big public performance coming up this November. I'm lining up the musicians for it now, and soon I'll schedule rehearsals for it. I've put together a set of "bucket list" songs that I've always wanted to sing. The total program, including talking, will run about 90 minutes. I like to talk, in case you hadn't noticed. Many of my musician friends will participate. I hope it isn't my final major performance, but I have to treat it like it is. This event will test the limits of my endurance, but for me, it's not optional. If I skip it, I'll regret it. That's the first item on the agenda.

Early next year, I'll write and produce my last CD project. It will be volume 20 of a series that I've produced since the 1990's. This CD series is the main reason that I'm as well-known in certain circles as I am. It's my legacy, professionally and ministerially. I want to finish it well, and then hand the franchise off to the next person who will take it over. If I don't get volume 20 done, and have to end with volume 19, which I finished a few months ago, it's not the end of the world. But 20 is a nice round number. It will make me happy if I can get one more really good CD project out. That's the second item.

In July of 2017, my wife and I will celebrate our 40th wedding anniversary. We'll get pictures taken and throw a big party with a live band at our home. We've done these types of events for big occasions before, the last one being for my 60th birthday party in May of 2015. This event will be a huge undertaking for us. But again, it's not optional. I'm not going to set this aside in favor of treatment. I wouldn't trade the memories of my birthday party for anything, even more time on this earth. Same for this party, as it will probably be the last one.

There are two more big items on the agenda. These will happen in no particular order, but must be done while I can still do them. I intend to turn this blog into a book, and I have a chance to put the gourmet dark chocolate ice cream I've made for years on the market. My hope is that, if successful, these will help support my wife after I'm gone. If a miracle happens, and I'm here longer than two years, they'll become my career in retirement.

These are just the highlights. I also look forward to continuing to mentor the young musicians I've been working with. I have to sell my recording equipment. I have to help my wife get rid of the clutter that inevitably builds up when you live in the same house for 16 years. I have to simplify the technology in this house, which I've always been in charge of, so it's a setup that my wife can operate easily in my absence. And I must continue writing this blog. Even after the book is out, I will continue telling my story for as long as I can.

While all of this is going on, my goal is to spend as much time as I can with the people I love, and who love me. As much as the work matters to me, the people matter much more.

That's why I have such a sense of urgency. That's why I so hope that I have at least a year with no pain. That's why I don't have time to do chemo. There's too much to do. It's more important to me to get these things done than it is to live longer.

So now you know how to pray for me more specifically. You can pray that I'll continue to have no pain so I can get these things done. You can pray that I'll have the strength and endurance to shine in my upcoming performance. You can pray that volume 20 of the CD series will be the best I've ever done. You can pray that my ice cream business will be a success, and that God will use my story to reach many. If you will pray that God will help me get all of these things done, I will be forever grateful to you, as I already am.

Can you feel my sense of urgency? Do you understand now why I won't set these things aside in order to try to get a little more time? I have promises to keep, and miles to go before I sleep. #waroncancer

Wednesday, September 21, 2016

Just What The Doctor Ordered

It's been quite a week since my last post. Since my prognosis last Thursday, I've had one good day after another. Until today. But don't worry, my bad day today is nothing serious. Just a disappointment. Just another case of accepting my limitations, which is not easy for me to do.

I should begin by clarifying the prognosis I told you about last Thursday. When I said that my oncologist gives me three to five years if I respond well to treatment, and one to two years if I don't, I left out what his implication was. He was really saying that if I start responding to future treatments better than I've responded to Lupron, I could get three to five years. But if I burn through those treatments as fast as I've burned through Lupron, then it will probably be more like a year or two. All the more reason to make good use of the time I have.

The day after I received that news, Friday, I had a rehearsal for the wedding I officiated on Sunday. The rehearsal was short and easy, concluded by dinner with close friends. Just what the doctor ordered.

On Saturday, my wife and I went to see our closest friend lead worship at her new church. I'm more proud of Nikki than I can possibly express. Since I had a wedding to perform on Sunday morning, this was our church service for the weekend, and it was just what I needed that day. It was just what the doctor ordered.

Then, on Sunday morning, I experienced one of the greatest honors of my life. I got to be the officiant at the wedding of a friend who is like family to us. She and her fiancee trusted me to write the ceremony and not show most of it to them ahead of time. They were willing to be surprised at their own wedding ceremony. Every part of that morning, from the preparation time beforehand to the reception afterward, was a blessing. I'll never forget that day, and I'll always be grateful for it, and for the people who let me be part of it. Again, it was just what the doctor ordered.

There's one more wedding ceremony I'd like to perform. You know who you are.

The wedding, as wonderful as it was, exhausted me. I was completely wiped out afterward. But I couldn't take a nap because we had close friends coming over to watch the Denver Broncos game. So I powered through it, and caught a second wind. An exciting Broncos win is always what the doctor ordered for me. Especially watching it with friends like Paul and Denise. All in all, a great day.

Not to be outdone by ourselves, we had company over again on Monday. Three more close friends. I'm starting to feel self-conscious about the number of close friends we have. It's an embarrassment of riches, really. This dinner had the added benefit for me of being surrounded by four beautiful women. Trust me, even on hormone treatment, this was exactly what the doctor ordered.

Yesterday, Tuesday, my wife and I spent the day at a nearby state park and reservoir. We have a spot there that we like, and we enjoy spending days there, hanging out, eating, listening to music, and reading our books. We take the dog with us. It was a perfect day on the beach, or as close as we get to beach in Denver, Colorado. It probably was our last day there this season, and it may well have been the best day we had there this year. It was very therapeutic. Just what the doctor ordered.

Then came today. The day I found out what my doctor really ordered. But first, I had an allergy attack at 4:30 this morning. I have pollen allergies in the fall. That attack woke me up and kept me awake, so I didn't get a good night's sleep, and I've been very fatigued all day. As a friend put it to me today, I got started with the tank on empty. My allergy attack continued for the rest of the day until I reached my therapist's office just before 2:00 this afternoon.

This blog has been, in some ways, one long account of the effects of Lupron on my body. Fatigue is a huge side effect. It affects my ability to do things I want to do. Today is a prime example.

Today of all days, I have tickets to a concert. I've been waiting for years to see a band I like come to Denver, and they're finally here tonight. I bought tickets a couple of months ago. I've really been looking forward to it. But now, I can't go. I just don't have the energy.

One problem is it's a general admission venue with very few seats. What I've done in the past for concerts like that is get in line early, so I can get a seat. Like three hours before the doors open. There's no way I can do that today. It seems like something as simple as that, which was no problem for me two years ago, is out of reach now.

Another problem is it starts late. The band I want to see probably won't start playing until 9:30 PM or later. That's too late for me, especially today.

Rock concerts have been my favorite pastime for as long as I've been old enough to go to them. Now there are a whole lot of shows I can't go to because I can't get a seat, they start too late, or both. That's hard for me to accept. I have more trouble accepting giving up rock concerts than I do ending my music career. Not that I have the money to go to very many anyway.

So that stinks. But it helps to remember how many good days I've had until today. One bad day out of seven is a pretty good average, even if the bad day showed me I have to give up my favorite thing to do in the world. Maybe not completely, but mostly.

The only thing left to tell is what the doctor actually ordered for me. My oncologist consulted with a colleague at the local university hospital. This is where I would go for any clinical trials, should I be involved in one. He doesn't have a study that I'm a good candidate for at the moment, but we'll keep in touch with him about that. He also told my doctor that he's not enthusiastic about Provenge for me. I was not sure about Provenge either, so we'll pass on that for now.

Which leaves adding Xtandi to Lupron. It looks like we're going ahead with that, but I still have to go to a dentist to make sure it's OK for me to take it. I haven't started looking for a dentist yet. I'll do that tomorrow.

While I was writing this post, I was also carrying on a message conversation with one of my best friends, who was trying to hold me accountable. Trying to make sure I did the right thing. I think the blog post I wrote in that conversation was better than this one. A friend like that is just what the doctor ordered, right while I was writing a post titled Just What The Doctor Ordered.

I mentioned that my allergy attack today ended when I stepped into the air-conditioned offices of my therapist. That was where this day turned from bad to much better. An allergy attack finally letting up always makes my day better. Seeing my therapist always makes my day better. When I got home, I started writing this post. Writing always makes my day better. My wife made me a nice dinner. Day continuing to improve. But I still can't go to the concert. So it's a mixed day rather than a bad day.

If I have a choice, I'll take one bad or mixed day out of seven every time. Before and during this difficult day when I found out what my doctor has ordered, I had six days and a lot of love that really were just what the doctor ordered. #waroncancer

Thursday, September 15, 2016

Life Expectancy

I went to see my oncologist this morning, with my wife by my side. I like having her there. Her presence is reassuring. It's also good for her to hear the news directly from the doctor, rather than from me. Not to mention having someone available to drive home when my world has been rocked.

And it was rocked today, even though he told me exactly what I expected to hear. But hearing it come out of the doctor's mouth somehow makes it much more real. But I'm getting ahead of myself, which I often do.

My oncologist was expecting a call from a colleague at the local university hospital about potential clinical trials that I might be a good candidate for. But he hadn't heard back from that doctor yet. I expect to hear from my oncologist or his colleague by Wednesday of next week. If I end up in a clinical trial, I'll tell you all about it when the time comes, as I always do.

My doctor will also ask his colleague about Provenge for me, which my oncologist refers to as a "vaccine." The way it's been described to me, it's not a vaccine by the definition I know. It's not a one-time shot that's only effective if you don't have the disease yet. But it's a treatment that is well tolerated, with few side effects, if any. And I've heard from friends how it's extended the lives of people they know. So I'm interested in that. But if I end up in a trial, that may be delayed until the trial is over.

My oncologist wants to start me on Xtandi, which is a capsule I'd take every day to make Lupron more effective. It's a hormone treatment, not chemo. My oncologist assures me that I should have no side effects from Xtandi. But that will also be delayed until we know if I'm being put into a clinical trial.

He also wants to put me on a bone-strengthening drug called Xgeva. Why do all of these drugs start with X? Xgeva is a shot that I'd get once a month. It's usually very well tolerated, but it can have a serious side effect for people with dental problems. It can cause bone death in the jawbone. Lovely. So I have to go to the dentist to make sure I don't need to have a tooth pulled, or a root canal. If I'm in good dental health, which I think I am, I'm a candidate for Xgeva.

Why do I need a bone-strengthening drug? Because of the cancer in the bones of my spine. The drug is supposed to stave off bone fractures and bone pain, both of which go with bone metastasis.

For years, my wife and I have both been very anti-pharmaceutical people. I really hate the idea of being on this many pharmaceutical drugs for the rest of my life. And I'm sure that won't be the end of the list, by any means. But without them, my remaining time could be very short indeed.

The aggressiveness of my cancer is the problem, as I keep saying. Because my cancer is so aggressive, treatments are not likely to give me as much time as they would for someone with a less aggressive cancer.

When the doctor had finished giving me my options, I had a few questions for him. The main question was one I had not asked until now. I wanted a prognosis. He gave me the exact answer I had been expecting. But though I expected the answer he gave, it still made my head spin when I heard him say it. You won't like it.

He said that if I respond well to treatment, I should get another three to five years. If not, one to two years. That's a sobering thing to hear from a doctor.

Before you start telling me that a doctor told you or a loved one you had six months to live ten years ago, and you're still here, ask if your disease or theirs was as aggressive as mine. Ask if I'm going to submit to every treatment that you or they went through. The answer to both of those questions is probably no.

I'm not glad that the time I'm being given is so short, of course. But I am glad to have a number. It gives me a sense of urgency to get things done while I still can. It puts my priorities in order. I know now more than ever what I'm supposed to do for the next year or so. I want to finish well. And I've always worked best under a deadline. That's a word with added meaning now. Deadline.

If you want to know the truth, I can handle the prospect of a short life expectancy better than the thought of having to go to the dentist! I don't even have a dentist. I haven't been to one since 2009. So that's the first thing on my agenda. Find a dentist I'm comfortable with who takes my insurance. I don't have any dental pain or anything, so I think I'll be told I'm OK to take Xgeva to strengthen my bones.

To repeat what I said in my post No Time To Waste, I'm not giving up, and I won't. If I was, I wouldn't be seeing a dentist or trying to get into a clinical trial. I wouldn't have gotten a Lupron shot on Tuesday if I was giving up. I still believe that natural remedies can extend my life, if not cure me. I believe that God can heal me at any time if he chooses to do so. But he hasn't so far.

If you want to know how I'd like you to pray for me, please pray that I'll continue to have no pain. The longer I don't have bone pain, the more important things I can get done. The more time I have before I start to deteriorate, the better.

I know that many of you will continue to pray for my healing. Please keep right on praying and believing for that. But I'm more concerned for the quality of life that I'll have before the inevitable happens. When I reach the point where I can't leave the house, or get out of bed, that won't be living. Not for me. That's why I have to do what I can, while I can. No matter what it costs me, physically or emotionally.

As long as God lets me, I'm going to do the things that are important to me. There are tasks that I want and need to accomplish, but even more important, there are people I need to spend time with. There's a story I have to finish telling. I'll keep telling it for as long as I can.

There are things I've been waiting to say for months, since this whole thing started. Now that I'm on the home stretch, I'll finally say them when the time is right. But not now. I've already given you enough to cry about.

It's been a while since I concluded with a passage of scripture, but today, I'm reminded of a familiar passage from the 23rd Psalm. I'll close with it today. It gives me hope.

Even though I walk through the valley of the shadow of death
I will fear no evil, for you are with me
Your rod and your staff, they comfort me
You prepare a table for me in the presence of my enemies
You anoint my head with oil
My cup runs over
Surely goodness and mercy will follow me all the days of my life
And I will dwell in the house of the Lord forever


Tuesday, September 13, 2016

A Day In The Life

I woke up angry this morning. Not just angry about something, but angry at someone. I had lost sleep because I went to bed angry. It doesn't matter what I was angry about, or at whom. The point is, I was angry for the first time in months. Long time readers of this blog know that anger was a real issue for me for a while, because of the effects of Lupron. But that hasn't been true lately. I had forgotten my anger. I didn't feel like I needed the 5-HTP supplement I'd been taking. I felt good. I think therapy is the main reason why.

Then, last night, something set me off. I struggled to sleep, and woke up tired and still angry. I took a 5-HTP in the morning, which I hadn't done for weeks. Normally, if I took one, I took it at night. I got past my anger and got on with my day.

I did some work. I recorded a song parody for a radio station in Houston, Texas. It was a parody of Queen's "We Will Rock You." "We Will Brock You," about the Texans' new quarterback.

I have the genuine privilege of officiating a wedding this Sunday. Some dear friends of ours are getting married, and they asked me to perform the ceremony. It's one of the greatest honors of my life, and I'm so excited about it. I wrote the ceremony, borrowing liberally from the traditional wedding ceremony so many of us remember. I spent much of the day practicing the ceremony, and communicating with the bride and groom. That was a really good part of today.

Of course, if you've been following along, you might remember that today is the day of my Lupron shot. That wasn't something I was looking forward to, but, been there, done that.

I've mentioned before that our insurance has a high deductible. The costs of the bone scan, CT scan, and Lupron shot are all still under the deductible, and very expensive. We weren't sure how we were going to pay for it, but we knew God would provide. He always has since we entered this valley.

About noon, the mail arrived. In it was the answer to our problem. We no longer have to worry about coming up with the money we need. It's covered. It felt like a miracle, and it still does.

Now, this was starting to feel like a really good day. And I still had my shot ahead of me.

The shot itself was a breeze. I insisted on a specific shot giver. The same one I had last time. Her name is Melanie. They wanted to give me the shot last Friday, but Melanie wasn't there, so I rescheduled. This just in: The painfulness of a shot is in direct proportion to the skill of the person giving it. Ask for Melanie by name.

After the shot, I went to the billing office. I told the financial counselor about our change of status regarding our insurance. She looked at her computer and said everything was in order. That made me happy, of course, and she said she likes making people smile. I could be wrong, but I'll bet financial counselors in hospitals don't get to do that a lot.

This was a really good day, in spite of how it started. To celebrate, my wife and I went to our favorite dinner spot. While we were there, we were talking about something, and I suddenly got very angry. It was over nothing, really. But my flare of anger ruined dinner.

I'll admit, I played the Lupron card on the way home. I had just had a shot about three hours earlier. Lupron brings anger with it, at least for me. And maybe there was some residual anger from earlier, still bubbling under the surface. We had talked about that at dinner.

So I took another 5-HTP when we got home. Only it was a new bottle, so I had to cut through the child-proof cap. I had to laugh at myself over the possibility of having a tantrum because I can't get the 5-HTP bottle open.

That's a day in the life of a man with prostate cancer on Lupron. Peaks and valleys. A roller coaster ride. Being Stage 4 only heightens it.

Tomorrow, I'll go back to taking 5-HTP every day. Twice a day, if I have to for a while. I'm not the only one living here, thank God. And I don't want to be angry.

The anger will fade, but the blessing will remain. The miracle will endure. Warts and all, it was a really good day. #waroncancer

Sunday, September 11, 2016

No Time To Waste

I think my head has finally stopped spinning. I've told everyone I need to tell about the latest development in my cancer journey. And the knowledge that I am loved has been reinforced a thousandfold. Literally.

Your response to my last post has been nothing short of amazing. The sheer number of comments, reactions, and pageviews is unprecedented for me, and for this blog. Welcome To Stage 4 was my first post to exceed 1,000 views. Loved ones have called, texted, messaged, and cried. I asserted that I am loved, and then you proved it. I'll never be able to thank you enough.

The hardest part of the past few days has not been confronting my own mortality. It's been the number of hearts I've had to break. Some of you have taken the news very hard. It breaks my heart to break yours. Nobody likes to be the bearer of bad news, especially when the bad news is about you. So this weekend hasn't been a fun one. But it's been good, because of love.

My next Lupron shot is scheduled for Tuesday morning. I was planning to wait until after the shot to post again, but I feel like there's more I should say before then. I told you I'd post soon, after my head had cleared, so I felt like I owed you this post. I feel like God has shown me something, and I need to share it.

For those I told in person, after their initial shock and disappointment, the most common reaction has been surprise that I'm not in pain. It seems odd to everyone I talk with about it that I feel completely normal. I'm probably not unique in this respect, but it seems unusual at the very least.

I asked this question in a support group that I belong to. There were some who reported no pain with bone metastasis, so maybe it's just a matter of where the spots have occurred, or how small they are. When it spreads further, (and it will) I expect to have pain at some point. But when?

I could say that I'm lucky, but if you've been reading this blog, or if you know me, you know I believe it's more than just luck. I've been talking about things that I need to accomplish over the next year or so, and as long as I'm not in pain or on pain meds, I'm able to do those things. I can't help but believe that my lack of pain is God giving me some time to get things done. That's what I feel God showed me in church this morning. He's giving me this time. So I'm going to take advantage of that time to the best of my ability.

According to current Western medicine, Stage 4 cancer is incurable. I've looked up the statistics for prostate cancer with bone metastasis, and they're not encouraging. My loved ones are upset about this for good reason.

I don't have a prognosis yet, but I will ask my oncologist about that for the first time when I see him on Thursday. If past is prologue, I don't expect him to give me a lot of time. Witness the fact that they expected Lupron to keep my cancer under control for two years, and it didn't even work for one full year.

You may wonder why I'm getting another shot on Tuesday, if Lupron is not keeping my cancer under control. Good question. The answer is that Lupron is still keeping a certain percentage of my cancer in check, just not all of it. If I stop getting the shots, the cancer it's been successful with will go crazy, and I'll have even less time. So I get another shot. Soon, my oncologist wants to add another drug to Lupron called Xtandi. It comes in capsule form, and sounds like a Star Trek character. My doctor hopes it will make Lupron more effective for me.

I'll know more on Thursday about treatment options. I also expect to talk to a naturopathic doctor soon. And because I live in Colorado, U.S.A., I will look into medical marijuana treatment as well. Gotta try something. If the doctors can't cure me, I have to see if there's something else that will.

But again, no chemo. I have many reasons for this, but let me just give you one of them. I want to be careful here. I have dear friends who are and have been on chemo. For one, it was very successful. Another is on it right now. I support them in their choices and love them with my whole heart. But it's a personal decision. They made theirs, and I'm making mine.

This blog is published in three different locations. In addition to this platform, it's published on CaringBridge and on That's why I end each post with #waroncancer. The founder of that site, the courageous Fabian Bolin, wrote a very eye opening blog post regarding his chemo treatment for acute lymphoblastic leukemia. You can read that post here.

They're pumping poison into his body that, if it spills on the floor, has to be cleaned up by men in hazmat suits. Thanks, but no thanks.

Chemo breaks your body down and reduces your resistance to germs. I want to be with people. I can't take time off to convalesce. I have stuff to do. I have people to love. I have affairs to put in order. And I have no time to waste.

I asked a good friend last night what I should say to my brokenhearted friends. What do they want to hear from me right now? The answer was simple; that I won't give up. So let me say it loud and clear. I won't give up. I won't do every conventional treatment, but I won't give up. I just want to use treatments that I believe have a chance to cure me, and ones that will allow me to function, so I can get my ducks in a row.

That's why I believe God is giving me this time with no pain. So I can finish well. So I can provide for my wife. So I can be a witness to how he used cancer to transform my life, and change me forever. That's what he showed me today. That's what I wanted to tell you. #waroncancer

Friday, September 9, 2016

Welcome To Stage 4

My head is spinning right now. There is a lot to tell you about since my last post. This whole week has been one for the books. But it's all been leading to this. I got the official word from my oncologist this morning. The bone scan that I had done on Wednesday shows cancer spots all up my spine. I am Stage 4.

I'm no longer a candidate for radiation treatment. I was dreading that anyway. I have some idea what my oncologist wants to do next, but he had not had time to review all of my options before I saw him today. He had an emergency with another patient when my wife and I arrived, and we didn't get to see him until 90 minutes after our scheduled appointment. I'll see him again next week, and we'll discuss treatment options at that time.

We looked at the images from the bone scan, and he showed me where the metastases are. I could see about five or six spots, with the highest being near my heart. I asked for copies of the images, but now, looking at them on my home computer, it's hard for me to tell what I'm seeing. I wanted to include an image from the scans in this post, but the image quality is too grainy. You'll have to take my word for it.

I have to admit that I'm surprised by this news. I had a feeling before my last PSA test that my number would be higher, but I didn't think that the scans would show that I'm Stage 4. I told friends this week that I felt like I'd be in worse shape physically if I was Stage 4. I was optimistic going into these scans. I fully expected that they would detect no metastasis, and I'd be getting pressure from loved ones to have the radiation procedure that was being recommended right way. I would have done it, too. Not for myself, but for my loved ones. But now, that's off the table.

My oncologist also said that he believes that, even if I had undergone radiation six months ago, I would still have ended up with bone metastasis now. So I would have gone through all of that for nothing. If that's the case, I'm glad I didn't put myself through that. That's the main reason I've avoided it. I never believed that radiation would cure me.

The problem is the aggressiveness of my cancer. That Gleason 9 score was gonna get me at some point. It was always just a matter of time. But then, it's just a matter of time for all of us. I'll repeat what I've been saying since I was first diagnosed. I don't know how much time I have left, but neither do you. Nobody gets to stay here permanently. None of us likes it when our friends leave the party, but we all have to go home sometime.

But there is good news. I have no pain. I'm still functional in terms of being able to do most of the things I want to do. That's not true of many with bone metastasis. I have friends in that condition, and they have a lot of pain. I feel pretty much normal. That may change, but for now, I'm very thankful that I feel OK. Physically, at least.

And that's not the only good news. I've always had an incredible support system, but it just got a whole lot better. And not just for me. For my wife, too. Maybe especially for her. I can't describe how much that helps. The love and support that I received this week got me through this week. I know that will continue for both my wife and me. We are immensely grateful.

I don't want to go into detail now about possible treatments. I'll only reiterate what I've said before. No chemo for me. I'll take hormone treatment for as long as it works, and I'll try some alternative treatments. Maybe there's a clinical trial I can get into. I'll be transparent about all of it. I owe you that.

There will be much more to talk about in future posts. I want to talk about my attitude towards mortality. I want to explain my decisions. And much more. But that's for later. For now, I only want to say that I am still at peace. I still know that I am loved. I know that now more than ever before. I have a renewed commitment to do what I can, while I can. I'm blessed that I'm still able to do some things that are important to me. Time is of the essence.

And I still say that if I could go back in time and change all of this, I wouldn't do it. Not if it meant that I had to go back to how things were before I woke up. I'd rather love and be loved while awake for a short time than sleepwalk in selfishness for decades and never know this much love, or feel God this close.

I know you don't feel that way about my cancer, and about this news. I know that your heart breaks for me, my wife, and my family. For your anticipated loss. That's why I feel so loved.

I'll post again soon, when I've had a chance to process all of this. But just knowing that you're reading this right now helps a lot. Knowing that you care is helping me put one foot in front of the other. Your prayers, messages and calls help more than you can imagine. Thanks again for your support. Thanks for being here. Love is the gift in the wound. #waroncancer

Monday, September 5, 2016

Dark Clouds And Silver Linings

Since my last post, I've been under a dark cloud most of the time. If I have something else to occupy my mind, I'm fine. But even a moment of reflection or stillness brings back the cloud that hangs over me. It will be there until I know the results of my next two scans. But there are silver linings, too.

It's unusual for me to feel this way. It goes against my usual optimistic, happy-go-lucky nature. But when you're waiting for scans that will show if you're Stage 4, it tends to occupy your mind.

I now have my schedule for the bone scan and CT scan that will take place this week. They both happen this Wednesday, September 7th. I check in at Porter Cancer Care in Denver, Colorado at 7:45 AM that morning. At 8:00 AM, I get an injection for the bone scan, which happens at 11:00 AM. Immediately thereafter, at noon, I have to drink contrast for the CT scan. I'm sure that's yummy. Then I have the CT scan at 1:00 PM.

The difficult part of all of this is that I'm not allowed any food or water that day until after the CAT scan at 1:00 PM. I can handle not eating for that long, but no water for that long will be torture. I'm thirsty when I get up in the morning. But the only thing I'll be allowed to drink until we're done is the contrast at noon. I'm not sure how I'll do it.

When we were attempting to schedule all of this with the oncologist's office, these were the time slots that were available. I could have scheduled one of the scans for Saturday the 10th, but that's too late to get the results in time for the consultation with my oncologist the following week. I'm tempted to put it off, but my oncologist is in a hurry. He thinks time is of the essence. So much for the supposedly slow-growing cancer.

My next Lupron shot, which was supposed to happen tomorrow, September 6th, has been postponed until this Friday, the 9th. Apparently the shot is being shipped from the hurricane zone in the Southeastern U.S., and they were concerned that the shot may not arrive by tomorrow. That's fine with me. It's great, actually, because of a huge silver lining in this dark cloud. More on that later.

I had a phone conversation with my friend Nicki last Saturday, who I've mentioned many times before in this blog. I call her "the daughter I never had," but that's not really true. Though she's not my biological daughter, and I had no hand in raising her, it's not true that I never had her. In reality, I've had her and she's had me since she was two years old. That's especially true now.

Anyway, during our conversation, we were laughing about something, and Nicki said that she was glad that I still have my sense of humor, in spite of "this time of utter crud" that I'm going through. That's a direct quote. This time of utter crud. That made me laugh, and it was almost the title of this post. I wanted her to draw it in one of her beautiful hand lettering pieces that have adorned several of my posts, with a "scripture" reference: Nicki 3:16. I thought that would be really funny, but it didn't seem right. Because while there is a lot of crud, there's also a lot of good. There are silver linings, and she is one of them.

Also last Saturday, my wife and I hosted an annual barbecue for the "music club" that I referred to in my post, The Gift In The Wound. It was a wonderful time with dear friends. We discussed a performance that I have coming up in November, which I'm very excited about. But, inevitably, some conversations turned to my cancer. Not all of my friends read this blog, so there were some who needed to be updated. So the dark cloud was there, but the silver lining of friendship and support was too.

But the biggest silver lining for my wife and me happens tomorrow. Our long time friend Jan will be visiting. She's Nicki's mom. This is the family that I paid tribute to in Introducing The Kochs, and also talked about in Heart On My Sleeve. Jan hasn't been to our house since my 60th birthday party in May of last year. It will be wonderful to see her again. Another silver lining. She's only staying for a day, but she's bringing the best gift she could possibly bring.

Jan is accompanying her best friend and ours, Nikki, (not to be confused with Nicki) on this trip. She's helping Nikki move back to Denver from California, where she's lived for the past 15 years. Jan is going back home to Fort Worth, Texas, but Nikki is staying here. This is the best silver lining my wife and I could have asked for. Nikki is our dear sister, colleague, friend, and our favorite singer. She's moving up in the world, taking her place as worship leader at a large church in the area. We are incredibly proud of her, and so thankful that she's finally coming home. Just when we really need her. Talk about your silver linings!

This is what Christians call a God Thing. Recently, I was feeling sorry for myself because of circumstances beyond my control. As I moped around the house, I asked myself what could possibly make me feel better. I realized that one thing that could definitely cheer me up is if Nikki called to say that she was moving back to Denver. At that time, it seemed like a pipe dream. But within the hour, Nikki called me to say she was coming home. That's what we call a God Thing. That's a real silver lining in this dark cloud.

Nikki and Jan are coming to our house tomorrow, Tuesday. We'll hang out for a while, eat some food and have some fun. Love will abound. I will probably cry. That's why I'm so glad that I won't get my Lupron shot tomorrow. That could put a damper on the festivities.

On Tuesday, I'll still be dreading Wednesday. But the silver lining of a long-awaited homecoming will outshine the dark cloud. Through it all, and in it all, God is good. Cancer is the dark cloud, but love is the silver lining. It's the gift in the wound. #waroncancer