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

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

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 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 with the people I love, and who love me, as I can. 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