Wednesday, May 31, 2017

Life In Our Days


In one of the comments to my post The Suggestion Box in a Stage 4 prostate cancer support group, Patricia Hällfors used the expression in the above graphic. I had never heard it before, and I found it to be very beautiful and profound. She and her husband, who is Stage 4, are choosing to try to add as much life to their days as they can, rather than trying to add as many days to his life as they can. This is my philosophy as well. Here is part of her comment that so moved me:

Our choice has been quality of life and normality in daily living. And soon I will be a widow. But such a love story we've had, and such beautiful kids... And we strongly feel it's better to have much life in your days rather than days in your life! It's so sad, but as you say: we're all going to die!

Needless to say, I found her comment very inspirational. I asked her if I could use it, and she said of course I can. So here we are.

The expression seems to have originated with Adlai Stevenson, who said, "It is not the years in your life, but the life in your years that counts." Same concept. I googled the phrase, and found that there's even a Facebook page dedicated to the life in our days concept. So though the expression was new to me, it seems to have been around a while, and for good reason. It's an excellent philosophy.

Last Saturday, my friend Trevor Downing posted on Facebook that, when cancer "finishes" him - his word - his life will come down to two dates and a dash. 1958-20whatever. And he's making the most of the dash. This isn't the first time Trevor has written something that spoke to me, nor do I expect it to be the last. It seems to me that making the most of the dash and adding life to our days are pretty much the same thing. And that's what my wife and I are trying to do. Make the most of the dash. Add life to our days rather than days to my life.

This will become much easier for us now that I'm fully retired as of tomorrow, Thursday, June 1st. We'll be free to focus on this next phase of our life together, however long or short that may be. I'm so excited.

The first major event after my retirement is that my wife and I will have our 40th anniversary pictures taken. This is a tradition we've had every five years since we got married in 1977. My wife is very artistic, and usually has a clear concept of the types of photos she wants, right down to the background and the decorative setting in which the pictures are taken. 

One of my goals has been to look good for these pictures. That's one reason I've been so concerned about losing weight. I don't want to be Gaunt Cancer Guy during that photo shoot. Having one more set of pictures of us together that we can display in our home, and add to our anniversary pictures gallery is very important to both of us. It's vital to me that she have those pictures when I'm no longer here. Getting them taken is a way of adding life to our days.



A few days later, there's what I'm calling Mark's Excellent Road Trip. On June 7th, I begin driving from my home in Denver, Colorado, to the home of our friends Christopher and Lori Caminiti in Mesa, Arizona, to be there for Christopher's birthday party and benefit concert. I'll stop over in Albuquerque, New Mexico both going and coming, and I intend to blog at each stop. I'm looking forward to this solo road trip very much, and to writing about it just as much. It will tax my endurance, and recovery days are built in so I don't overextend myself. It's awesome to be able to do that because retirement frees up my schedule so much.

It would be easy for me to say a trip like that is too much for me. But that wouldn't be adding life to my days. It wouldn't be making the most of the dash.

At the end of July, we'll celebrate that 40th wedding anniversary with the biggest party we've ever thrown, and we've thrown some doozies. We'll have three bands, and a lot of friends, food, and fun. It will be a night we'll always remember. Life in our days. Making the most of the dash.

If you've been following this blog, you know that I have lots more to inspire me and keep me busy for the rest of this year. From a summer show with the rock band school for kids to continuing the process of getting my gourmet chocolate ice cream on the market to turning this blog into a book. Retirement does not mean inactivity, as any retired person can tell you. Most of the retired people I know say they have no idea how they ever found the time to work!

Another priority that I've mentioned many times is spending as much time with loved ones as I can. I went to a rock show Saturday night that I would not have attended under normal circumstances, even though I knew I'd enjoy the concert. But it was getting some time to hang with one of my best friends, who was the promoter for the show, that made me so excited to go. And I did enjoy the concert very much. Both bands were great, and the time spent with my friend was even better. Afterwards, he stayed over at our house, and he and I stayed up and talked until after 1:00 AM. Unheard of in my current condition. But it was precious time. Time with loved ones is the best way to add life to my days.

And oh yes, I have the next PSA test coming in June, and the subsequent consultation that will determine a lot, in terms of my prognosis and treatment. But I'm not focusing on that. I'll certainly report on it. That's what this blog is for. But I won't let that test rob me of the joy I'll receive from any of the above activities. In fact, the worse the prognosis, the more we're determined to make the most of the dash. To add life to our days, rather than trying to add days to my life.

As I said in my last post, my wife and I are on the same page with all of this, which I count as a tremendous blessing. We agree in our attitudes towards treatment, and accept the reality of my mortality. My wife is a rock. She's taken all of this news as well as any wife could. We don't know how many days we have left together, but we're going to put as much life in them as we can. We're especially focused on doing as many fun things together as we can while I still feel good enough to do those things. We don't have the money to travel the world or complete our bucket list (Hers: spend a month in Tuscany, Mine: go to MorseFest this September) but there's plenty we can do together right here that will fill our days and make memories. I'm looking forward to it very much.

Often, when a store has an item on sale, they'll use the phrase For A Limited Time Only. We are all on this planet for a limited time only. None of us knows how many days we have. That's why it's so important to make the most of the dash. Because what matters most is not the amount of days in our life, but the amount of life in our days. I wish I hadn't had to learn that from a Stage 4 prostate cancer support group, but I'm glad I finally did. #waroncancer #bearingwitness


It is not the years in your life but the life in your years that counts.
Read more at: https://www.brainyquote.com/quotes/quotes/a/adlaieste137180.html

Sunday, May 28, 2017

Explaining Myself... Again


I'm happy to report that the negative reaction I was expecting from my last post never happened. I only received one comment that I'd consider negative. The rest was overwhelmingly positive. In fact, after three days, The Suggestion Box is now my all-time most viewed post. Apparently many people could relate to what I wrote. So I'm glad I followed my heart and wrote that post. You may not always like what I write here, but you'll always get the unvarnished truth from me, at least as I see it. I did lose about thirty Facebook friends, though. I have over 2,600, so it's not that big of a loss, but it still bothers me.

I got called out by a friend for "friending" (thanks, Facebook, for turning the word friend into a verb!) so many people just because they liked or commented on one of my posts. I was accused of craving attention. It's true that I do that, but that's not the reason why. To be very honest, in most cases, I do it simply so this blog will show up on their timeline. Not everyone is a member of a support group for prostate cancer. I want as many eyeballs on this blog as I can possibly get. Is that wrong? Is it wrong to try to expand my readership? I hope not, because I'm going to keep doing it. Call it self promotion if you want. I feel like what I'm doing here is important, that it's helping people. I hear that every time I post. So yes, I will keep sending friend requests to those who like or comment on my posts. Feel free to ignore or delete those requests if you so choose. But I hope you'll decide to join us here.

I understand that many who truly care about me may have felt that I was giving up after reading that post. One of my closest friends said as much to me just last night. If he felt that way, I know others must have too. So I feel like I should explain myself better than I did in The Suggestion Box. I thought I was done with the Explaining Myself series, but I guess not.

When I said that I may not be open to adding any new treatments, here's what I meant. In terms of conventional treatments, the ones that insurance covers, there are only two options for me at this point, at least to my knowledge at the present time; Additional hormone treatments and chemo. If you know me, or have read this blog with any regularity, you know that I won't do chemo. As I said in a previous post, I don't believe it will give me that much more time, (around ten months seems to be the number most guys in my situation get from their doctors) I think it will just ruin the remaining time I have. Nobody is saying it will cure me, or even send me into remission.

Additional hormone treatment would make me even weaker and feel smaller than I do now. I'd be even less able to do the things that matter to me. And based on past experience, I'd only get a few months out of that too.

There may be treatments my oncologist can offer, or ones that he can send me somewhere to try, that would be covered, and that I know nothing about. That will be a topic of our consultation in June, if my PSA rises again, as both of us expect it will. I'm open to anything that is both covered by my insurance and won't seriously reduce my quality of life. I'm just doubtful that those treatments really exist. I hope I'm wrong.

I've read a bit about Proton Therapy, and it is covered by my insurance, but my oncologist's office doesn't offer it. I will ask about it the next time I see him, though. Maybe he can refer me to a place locally that does it. But that place would have to take my insurance, which not all providers do. And I don't know if I'm even a candidate for that, being metastatic.

The same is true for Immunotherapy. I don't know if my insurance covers that, or if anyone who offers it in my area takes my insurance. Or, again, if I'm a candidate for it. I also don't know what either of these therapies would do to my quality of life. These are all questions yet to be answered. If I get the right answers to either of these, I'm not opposed to trying them.

The problem with every non-conventional treatment out there, the ones that aren't covered by insurance, is money. They're all very expensive, from Naturopathic treatment to essential oils to my beloved cannabis oil suppositories. I'll be very blunt and vulnerable here. Our income is next to nothing. We rely on friends just to stay afloat, financially. Our credit, while very good, is pretty much maxed out. So it isn't just that I refuse to go into debt for treatment, I can't do that. We can't qualify for a loan in our present circumstances. So unless someone steps forward and offers to pay for one or all of these, I have to make do the best I can.

This is also why I can't travel for treatment. It costs money that we don't have. Others may be able to borrow money to do this, but we can't. Simple as that. We've already done the crowdfunding thing. I don't feel like I can go back to that well again.

When I said that I'm "done looking for a way out of this mess," that may have been a bit melodramatic. But I am very tired. After 21 months of hormone treatment, sometimes I do want to just chuck it all. Every guy out there who is on Lupron, Xtandi, or any other hormone treatment knows exactly what I'm saying. It beats you down. It reduces you to a bowl of jelly. In the past week, two of my prostate cancer brothers, both of whom I've gotten to know over the past months, have both decided go off of treatment. Both are sick of living from one PSA test to the next. They want to forget about cancer and just live their lives. I'm not there yet, but I'm getting close. Unless you've been on this stuff for as long as I have, you'll never know how that feels. I hope you never do.

To those who are close to me, or not so close, who wish I would fight harder, I say that it's hard to fight when you feel like you can't even raise your boxing gloves.

To those who say I should fight to stay around for my wife as long as possible, I can only say a couple of things without giving away personal information. First, my wife and I are in lock step when it comes to my treatment. She agrees with me on all of it. She doesn't want to lose me any earlier than she has to, of course, but she supports all of my choices and agrees with my opinions. In fact, on the subject of chemo, she's even more hard line against it than I am. And on the financial side, my attitudes about fighting are all about her.

Maybe I'm old fashioned, but I still believe that a big part of a husband's job is to provide for his wife and family. We don't have kids, so she's the only one I feel I'm supposed to provide for. Frankly, I haven't done a very good job of that for several years. Our retirement accounts are meager at best. Our main asset is our house, which could be sold at a substantial profit, but once our debts were paid, we couldn't afford anything decent in the overpriced housing market here in Denver, Colorado. And I don't want to sell and move. I want to protect this asset for her, so that when I die, she can sell this house, and combined with the insurance money, her 401k, and her Social Security income, she'll be able to live the rest of her life without having to get a job. Hopefully sales of my ice cream and book will help her too. It's all about her, even though it may not look like that to you.

Jesus said, Greater love has no one than this: to lay down one’s life for one’s friends. Or one's wife. My own paraphrase. In my mind and heart, I show my love for my wife not by depleting our resources to try to stay alive, but to provide for her the best way I can. If push comes to shove, I will bow out early in order to do just that. Unless I feel like our financial needs will be met, and we can live a comfortable, fun retired life together, free of the constant burden of fighting cancer, I don't see the point of putting both of us through hell for months or years with one treatment after another, hoping against hope that each new one will be The One. And meanwhile, drain all of our assets and leave her in worse shape when I finally do die. She will have to mourn my loss sooner or later. I want to leave her in the best financial condition I possibly can when that happens. It's the least I can do for her. And I'm willing to lay down my life for her in order to do it. I love her that much.

Of course, I know that she is not the only one who will mourn my loss, and consider it premature, no matter how hard I fight. I know that you want to push that date off as far in the future as possible too. Someone commented just this morning on my last post that I should be thankful that so many people care enough about me to want to give me advice about how to treat my cancer. Many don't have that. I agree 100%. I am thankful for all of you. I may well ask you for information or advice if I feel you're the right person to ask. I did that with a dear friend just this morning. It's the unsolicited kind that I object to. The friend I talked to this morning has wanted to share information with me for some time, but waited until I asked. I appreciated that very much, and I finally did ask.

I hope I've explained myself well enough in this post. Maybe you feel like I didn't need to do that, but I did. The last thing I want is to be misunderstood because I didn't explain things well enough the first time. I actually have another post almost completed, that I intended to publish today, but I felt I needed to write this one first. My next post will be much more cheerful. The title is Life In Our Days. I hope you found this post informational, but I hope you find that one inspirational. I do. #waroncancer #bearingwitness

Thursday, May 25, 2017

The Suggestion Box


I need to warn you. This is a hard post. You may not like it at all. You may be offended by it. But I have to say it. I hope you understand, and I hope I don't lose too many of you with this post. But this is how I feel.

First of all, I need to say that I'm not directing this post at anyone in particular. If you think I'm talking about you, I'm not. Except for one or two specific examples I give, I'm speaking generally.

When you have cancer, you get a lot of suggestions from well-meaning people. They tell you what treatments you should consider. They tell you how you should eat. They send you articles to read, and links to websites for cancer clinics in exotic locations. They tell you to keep fighting, and to never give up.

When I was first diagnosed, I was like a sponge, absorbing all of this information. But now, after 21 months in treatment, I feel like I've seen them all. I can't tell you how many people have sent me that "Truth About Cancer" video. Now, all of this advice has become rather tiresome. Especially since I'm not asking for any of it.

Even now, in the comments of almost every post, someone adds a comment about what they think I should or shouldn't do, regardless of what the topic of the post is. Most the time, those comments are on Facebook. But some comment on the blog post itself. In the comments of my last post, someone suggested a treatment I should look into. This comment had nothing whatsoever to do with the content of my post. But I have this blog set up so I have to approve comments. I didn't approve that one. I deleted it.

But it isn't just comments on my posts. People message me with links they want me to look into, and videos they want me to watch. Most of the time, I've seen what they sent me before. Many times, in some cases. I even received a message this week from someone saying I should travel to India for treatment! As if!

It seems that people think I have a suggestion box on my desk, and they're free to stuff that box full of all kinds of good ideas. But I'm here to say that I'm no longer open to suggestions. The suggestion box is closed.

I understand that those who do this are only trying to help. If we are friends, your suggestions come from a desire to keep me around as long as possible. I appreciate that. But I have to do this my own way.

Of course, there have been times when I've talked about a problem I had, and friends pointed me in the right direction. My friend Deanna, in particular, really saved me from some terrible emotional times by suggesting I try the supplement 5-HTP. It worked wonders for me when I really needed it. I think it was my friend Sandi who suggested taking Magnesium for my leg spasms. That worked for me too. I appreciate both of these helpful suggestions very much, and the friends who gave them.

The difference is, both of them were responding to a need I expressed, and tried to meet that need. It wasn't just, "Oh, you have cancer? You should try this! I saw it on the internet!"

At the risk of offending so many who want me to try to find some way, any way to stay alive, the only people whose advice I'm willing to entertain regarding my cancer treatment at this point are my oncologist, my nurse, and my nutritionist. The medical professionals who treat me. And even they don't have the final say. I do. They work for me.

I'm not interested in getting a second opinion. I'm not interested in traveling for treatment. I have confidence in my team, and it's necessary for me to stay within the confines of what my insurance covers. I can't pay for expensive new treatments that insurance doesn't cover yet. I can't pay for naturopathic treatment. I will not go into debt to try to stay alive a little longer. So when my oncologist runs out of options for me that I can go along with, and that my insurance covers, well, we won't go there quite yet. But I think we're pretty close to the end of that list now.

Please understand that my attitude about this is not a reflection on you. Especially if we have a real relationship, and aren't just Facebook friends. Not to say I don't have real friendships on Facebook. I most certainly do. I love you, but I'm done looking for a way out of this mess. Barring a miracle, there is only one way out.

And if the extent of our relationship is that we belong to the same support group on Facebook, or we're Facebook friends but don't really know each other, well, I want to say this as kindly as I can. Do you really think it's your place to tell someone you barely know how they should make life or death decisions?

I think one of the problems here is that most people are fighters when it come to an illness like this, and I'm not. They're willing to try anything and everything just to keep breathing as long as possible. If you're that type of person, it's hard for you to imagine why everyone wouldn't feel the same way. But I don't feel that way. There's a limit to how hard I'm willing to fight.

Part of this is because I'm a man of faith. I don't believe that survival is the greatest good, and death is the thing most to be avoided. I never have. I believe I have an eternal home waiting for me. In the light of eternity, does how much time we get here make all that much difference? Does anyone in Heaven think, "Boy, I sure wish I'd gotten a couple more years down there"? I doubt it. In all of the "near death experience" stories I've heard, I have yet to hear one where the person who crossed over wanted to go back. They're always told, "It's not your time. You have to go back."

News flash: We all die. Nobody gets out of here alive. It's just a matter of time for all of us.

It's not that I'm stopping all treatment. Of course not. But I may not be open to any new ones. I'll have to see what my oncologist has to offer. As far as I know, we'll continue with Lupron and Xtandi, along with Xgeva to strengthen my bones. Hopefully that will at least slow the growth of my cancer, and keep me from having a catastrophic bone break or spinal issue.

I understand that you want to keep me around if you love me. And I have to say again that I'm astonished and humbled by how many of you there are. And I love you too. But urging me to fight for every minute and spend my remaining time searching for a cure that doesn't exist is making it about you. It's not about what I want, it's about what you want. And worse, telling me to believe in miracles is questioning my faith in God. I have faith in God. So much that I'm willing to let him do whatever he wants with me.

I don't know what my oncologist will say if and when my PSA rises next month. I don't know what remaining treatments he'll have available that will both be effective for a while and not compromise my quality of life, such as it is. I will listen to him, and my nurse too. I'll talk it over with my wife. Together, we'll decide what to do and what not to do.

What I need, and what every other cancer patient needs, is support. Encouragement. Love. Prayers. If we say we're looking for information, please send it to us. If modern medicine has failed us, and we're looking for an alternative, we'll read every article you can throw at us. But as for me, I've reached a point in my journey where I feel like I have a pretty clear picture of what I'm supposed to do. And that's what I will do.

Thank you for your love and concern for me. Let me say one more time that I know you're only trying to help. I do need your supportive comments, your messages, texts and calls. I most definitely need your prayers and your love. But I don't need any more suggestions about treatments I should pursue. The suggestion box is closed. #waroncancer #bearingwitness

Saturday, May 20, 2017

Always On My Mind


Not the song by Willie Nelson, though it is a great song. It's something else that's always on my mind. I think you know what that is.

A friend asked me recently if there's ever a day that I don't think about cancer, and jokingly said that could be a blog post. Well, here's the post. But it's no joke. I don't think about cancer every day. I think about it every minute.

It's not the first time this particular friend has inspired a blog post. I don't expect it will be the last. There are a few of you who know by now that your words can and will be used in a blog post. But not against you. Never against you.

Not that cancer is at the forefront of my mind all the time, but it's the permanent backdrop of my life. It's always there. Especially now, after the news I got last week. That rising PSA number brought me crashing down to earth fast. I was supposed to be the bumblebee, doing the impossible for a guy with all of my factors. Maybe I still am. We'll find out in June. But it doesn't feel that way to me. It feels now like my wings really are too small, and gravity is pulling me back down. So it's on my mind even more than it was before.

I'm not worrying or stressing about it, but I do want to talk about it. A lot. Have you noticed? When I wear one of my cross pendants every day, I'm always hoping someone will ask me about them, so I can tell them about my cancer. People rarely do, though.


If we know each other, don't ever feel like I want to avoid the subject. It's not me who wants to avoid talking about it, it's you. I need to talk about it. Because it's always on my mind.

Rather than worry and stress, the main feeling I've had since my last PSA result, and the consultation I had with my oncologist, has been sadness. I feel sad all the time. I can still enjoy things that give me pleasure, like watching a good movie or TV show, or listening to music I love, or reading a good book, or being with loved ones. Especially that. But the sadness is always there, like a blanket covering everything.

It wasn't like that before that number started rising again. Back when I was the bumblebee. Sure, I felt like I was shrinking, getting smaller and weaker by the day, but I thought my cancer was shrinking too. Now, like The Incredible Shrinking Man, I keep getting smaller, while the spider has started to grow.

So my mood has changed. I try to think about other things, and I'm successful much of the time. But if I don't have something specific to focus on, the wave of sadness comes back. It's all gotten too real.

Well, this is a depressing post, isn't it? I'm sorry if it comes off that way, but I have to tell you the truth. I have to bear witness to what this is like, at least for me. I'm not afraid, I'm not worried or stressed, and thank God, I'm not in pain. Much. But I am sad. And I'm very tired.

Let's be honest. I've been preoccupied with the subject of my cancer since I was diagnosed. People would say I must be tired of talking about it, and I'd reply that it's all I want to talk about. That's why I write this blog, obviously. So I can talk about it with as many people as possible. But even that's not enough.

That's also why I'm in therapy. So I can talk about it some more. I talk about lots more than cancer with my therapist, but the subject is never far off. I doubt there's been a session where it didn't come up. Because it's always on my mind.

It doesn't take much to make a day go sideways for me now. After a frustrating morning in my recording studio Friday, where a technical glitch kept me from making any progress on my final CD project, I had to stop working by around 12:30 in the afternoon. I was too upset to work. Even after a good day's work yesterday, as soon as I finished for the day, the sadness came rushing back in.

My PSA was expected to rise at some point, so I'm not sure what I'm so sad about. Actually, I do, I'm just not ready to talk about it here yet. But I think a big part of it is just sadness about running out of time. I'm not angry about my cancer. I don't want to shake my fist at God about the unfairness of it. But I am sad about it, and I'm preoccupied with it.

Before you tell me not to think about it, before you say I should just live my life and not let cancer define me, tell me if you've been in my shoes. And even if you have or you are right now, everyone processes these things differently. There's no right or wrong way, and there's no instruction manual.

It's not like me to feel sad for so long. I keep expecting my usual upbeat nature to assert itself. Maybe that will happen if my PSA goes back down next month. Maybe finishing my recording work, selling my gear, and going on a road trip in June will do it. Maybe I need to go back on the 5-HTP supplement for a while. But even if the sadness fades, the preoccupation won't. That's been a constant from the start.

I'm sorry this post has been so down. I'm just being honest about where I'm at. I find myself sighing deeply at the oddest times. Sitting down to tie my shoes. Making breakfast in the morning. There's a heaviness to everything now.

I have a lot of work to do to get this CD project done in time, and that one little number knocked me off course for a week.  I just couldn't get back there mentally. This week was better. I might not make my original deadline, but I shouldn't miss it by much. It helps to have something to occupy my attention. It almost makes me forget for a little while. Almost.

Because no matter where I am or what I'm doing, cancer is there. It's eating me up inside while we talk over coffee, or interact on Facebook, or breathe. So yes, it's always on my mind. #waroncancer #bearingwitness

Monday, May 15, 2017

Unfairness


I was talking with a couple of friends this past week who were upset about the turn my cancer has taken, and both of them said that they thought it wasn't fair that I had cancer. Especially this deadly kind. I have to agree with them. It's not fair at all. It's not fair that I got sick at such a relatively young age, 60. It's not fair that it's so aggressive, and gives me so little time. It's not fair that my octogenarian parents will probably outlive their son. And on and on.

But what are we really saying when we say that? Are we saying that no one should get sick or die? Are we saying everyone should just die peacefully of old age? Or are we saying that calamities like terminal illness should only happen to "bad" people? And who decides who the bad people are?

One of my friends actually implied that in our conversation. She said she thought people like me - a direct quote - should be exempt from cancer. People like me? I told her that before I had cancer, I wasn't the guy she sees now. I wasn't anyone especially "good." I wanted people to think I was, but deep down, I wasn't.

But even if I was the Pope, Ghandi and Oprah all rolled into one, I don't think that exempts me from getting cancer. Or from what might be considered a premature demise. I almost said dying young, but no one would mistake me for young.

I've said before in this blog that I've never asked the question, "Why me?" Because if you do, you also have to ask, "Why not me?" What makes me so special that I can expect to avoid something like this? Not a thing.

I know many feel this sense of the unfairness of it all, not necessarily about me, but themselves or someone they love. Something terrible has happened, or did happen, or is happening to them or a loved one. The cancer community is replete with such people. But it isn't just about cancer. We all have terrible things happen to people we love, or to us, or both. Many times all at once. I have friends for which this is true right now.

I recently read When Bad Things Happen To Good People by Harold Kushner. It's a very well known book that I had never read until a couple of months ago. It's pretty much the definitive statement on this subject. If you struggle with this question of why life isn't fair, I highly recommend it. I won't try to answer that question in this post. I'll only agree that there's nothing fair about any of this, but that includes the bad and the good. And for me, there's been so much good, it's really unfair.

Let's start with the fact that I'm now in my 21st month without pain since my diagnosis. This is an incredible blessing that many of my brothers don't have. Especially those who are Stage 4 like me. I know that pain is coming, but the fact that I've had this much time without it when so many others suffer is really unfair.

My wife and I have had a tremendous amount of financial help, most of which I never talk about in this blog. I have friends with mountains of medical bills and no way to pay them. They get no help at all, while we don't have to worry about that. It's so unfair.

I have a loving, supportive wife and family. Many of my prostate cancer brothers have no one. No wife or significant other, and no family. Or their families are estranged, or marked by toxic relationships. In many cases, their spouse left them when they got cancer. So they face this disease alone. It's just not fair.

I have an incredible group of friends who support me and love on me constantly. It's in my nature to make friends easily, so I understand that I play a major role in the quality of my friendships. We all do. Good people attract good people. But why should someone suffer alone just because they don't make friends easily? It's not fair that it's so easy for me and so hard for them. They need love, companionship and support as much as I do.

I have a newfound purpose. I'm doing it right now. And I have other new passions that God has given me to replace my old ones. Many of my brothers mourn the loss of the man they used to be, and struggle to find a new purpose. I don't know why this gift was given to me and not to them, but it doesn't seem very fair to me.

I could go on, but it's starting to sound like bragging. In spite of last week's bad news, it seems like every time I turn around, another incalculable blessing falls into my lap. One of my biggest struggles is feeling like I don't deserve all of this blessing, and all of this love.

Fairness is a human construct. Nature knows nothing of fairness. A herd of gazelle, if it could think, would probably think it's unfair that the weakest and most vulnerable among them are the ones most likely to be eaten by a lion.

Like it or not, cancer is part of nature. It's just cells doing what cells do; trying to reproduce. In a way, cancer is very fair. It doesn't play favorites. It doesn't care if you're good or bad. To cancer we're all just food. It's horrible, but it is fair.

Jesus didn't promote the idea of fairness. Consider the reaction of the elder brother in the Parable of the Prodigal Son. (Luke 15:11-32, blog) This young miscreant wastes his whole inheritance, then when he runs out of money, runs home with his tail between his legs, and Dad throws him a huge party. What's fair about that? But that's the Gospel. There's also the Parable of the Workers in the Vineyard. (Matthew 20:1-16, blog) The guys who show up with an hour left in the workday get paid the same as the guys who worked all day. Is that fair?

God isn't that interested in fairness. What God loves are justice and mercy. And us. More than anything, he loves us. God's love is not about fairness, it's about grace. It's about giving us what we don't deserve. It's totally unfair, in the best possible way.

We all experience things in life that seem unfair. Maybe it's a terminal illness for you or someone you love. Maybe it's a chronic condition that you're forced to live with for many years, like my dad has. Maybe it's a terrible family situation, like one of the friends I had this conversation with. Maybe it's one of a million other things. But if you look hard - or maybe you don't have to look that hard - you will see that the blessings in your life outnumber the bad things. Maybe you know someone who, when their life is compared to yours, you have it so good it seems unfair. I hope you can see the reality of that for you, the way I have in my life.

So I have to agree, this whole business is as unfair as unfair can be. Both in horrible ways and wonderful ways. But for me, the wonderful has far outweighed the horrible. That seems more than fair to me. #waroncancer #bearingwitness

Thursday, May 11, 2017

One More Month In The Waiting Room


I was apprehensive before my appointment with my oncologist today. My PSA number has risen a bit, from .06 to .35, and I wanted to know what he thought it meant, of course. It turned out that my guesses yesterday were correct. He wants to wait and see.

He called today's PSA score "one data point." He needs another to recommend a course of action. But at the same time, he knows it's up to me. If I didn't want to wait, we'd go ahead with more scans now. But I can wait.

As usual, I "checked in" on Facebook when I sat down in the waiting room. As usual, the amount of support I received made me feel very loved. And as usual, the staff at Cypress Hematology and Oncology here in Denver, Colorado got me in without much of a wait.

Someone recently asked on Facebook what the best cancer care place in the Denver area is, and while I couldn't answer which is considered "the best," I answered that there's no place else I'd rather go, and no other people I'd rather have treat me than these people. That feeling was reinforced in a big way with this visit.

Much as I thought, my doctor wants to see if my PSA will go back down of its own accord. I still have my prostate gland, and it's still producing PSA. So it's possible that's all it is. But neither he nor I feel that's likely. He thinks the number will probably go up again by this time next month. I do too.

He was very frustrated that I didn't get more time from Xtandi. But we're trying not to make that assumption yet. We'll just sit in the waiting room for another month to know for sure. I'll keep taking my pills every day in the meantime.

I told him about my sore shoulder. He poked at it, and asked what hurt. He asked when the pain started, and other questions. From my answers, he surmised that it's probably an injury or some rotator cuff issue that happened when I began working out - at their behest, by the way - a couple of months ago. I know that's when I noticed the pain for sure, when I started working out. Shoulder presses in particular hurt, and I was only lifting the bar with no weights. He gave me some simple steps to follow to try to rehab the shoulder as best I can for the next month.

At the same time, he assured me that he realizes that because of the history I have with this shoulder, and how my original diagnosis was thought to have found cancer there, that we need to pay attention to that possibility. So if, when I go back in June, my shoulder is no better, and my PSA rises further, he will order scans to see what can be found, both in my left shoulder area and everywhere.

He knows my priorities and criteria when it comes to treatment. He knows that there aren't many more conventional treatments that I will agree to, if any. So this is a significant milestone. If my next number is higher, as both of us expect it will be, we will be making some very difficult choices.

Before he ran off to his next patient - these doctors and medical staffs are stretched far too thin - I asked him to sit for a minute so I could tell him how much I appreciate him and his staff. It was another one of those "sit still while I tell you how much I love you" moments, which seem to happen for me fairly regularly. I didn't use the L word with him, but I made sure he realized how blessed I feel to have such people caring for me.

Then, my favorite nurse, the famous Melanie came in. I had two shots to get today. We went back to the four month version of the Lupron shot, thank goodness. So hopefully my appetite won't go haywire this time. But my hip is sore, and it will be for about a day until the medicine spreads throughout my system. I also got my monthly Xgeva shot for my bones. That one's easy. Just a shot in the arm. But I didn't feel either one, since Melanie is the best shot giver in the observable universe.

After the shots, I also wanted to have a serious conversation with Melanie. Both she and the doctor had attempted to minimize the size of my PSA increase, until I reminded them that in terms of the rate of increase, it's a lot. A factor of almost six. They both sadly acknowledged that was true. Their job is to try to encourage me, but they were both honest with me when I pressed them. That's just one reason I love my team so much.

Melanie is a chemo nurse. My oncologist knows that I have no intention of doing chemo. I could write a whole blog post as to why that is, and maybe I should. But the bottom line is, I don't believe it will give me much more time. I think it will only make the time I have left miserable. It will definitely not cure me.

I've grown attached to Melanie over the past several months, and I wanted her input on the subject. I knew that it would come up soon anyway. I specifically asked if she'd treated guys in my specific condition. She admitted that they don't get a lot of prostate cancer patients there. Most guys with prostate cancer see a urologist. I think that's a mistake, but that's for another post too. I wanted to know if she had treated any Stage 4, Gleason 9 prostate cancer patients with chemo, and if so, what were their results? She said she'll do some research and tell me the next time I see her.

But I'll tell you one thing. Nobody is saying that chemo will kill my cancer, or even give me more than a few months.

I was a little afraid that Melanie would pressure me to do chemo, but she didn't. She totally understands, and shares my views on the subject. She sees it every day, up close.

I find myself marveling at these people who care for cancer patients for a living. They develop attachments to their patients, and then, in many cases, lose them. They treat terminally ill people every day, and keep a smile on their face and a kind word on their lips. I don't know how they do it.

I won't reveal the rest of my conversation with Melanie. It was between her and me. But I'll tell you this. It made me very happy to realize that Melanie will be my nurse for the rest of my life. She will be there, right till the very end. It's a gift she has, to be a caregiver to the dying. I'm welling up right now with gratitude that God brought her into my life. And all because I was scared of a shot and demanded their best shot giver! That was about a year ago now. Today, she's one of the most precious people in my world.

So I'm in the waiting room for another month. But it will go fast. I have lots to do between now and then, including wrap up my last recording project and take a road trip to Arizona for a dear friend and cancer brother's benefit.

Both my doctor and my nurse hated my results and their implication. I know you do too, especially when things seemed so hopeful not so long ago. But I always knew this day was coming. The day when the combination of Lupron and Xtandi would no longer control my cancer. The day when I would look at the remaining conventional treatments available to me and say, "No thanks" to all of them. I just didn't think it would be this soon.

There is still the cannabis oil treatment I've been on. I'd like to move back to a full dose, rather than the "maintenance" level I'm taking now, just to see if it will help. But I'm not willing to jump through a lot of hoops to try to stay alive. No major changes to an already healthy diet. No magic supplements. No cleanses. No essential oils. No alkaline water. I just don't believe in that stuff. I'm sorry. I'll talk about all of this much more in future posts, as I already have in past ones.

I feel that my job is to trust God, and bear witness. That's another blog post right there, and maybe the title of my book. Bearing Witness. Fighting for a few more months is not my style. Telling my story is. I have a lot more to say. I just have one more month in the waiting room before I can say all of it. #waroncancer

Wednesday, May 10, 2017

More Than Just A Number


I was expecting to get my new PSA number sometime during the day yesterday, but it didn't come in until after 10:00 PM last night. Don't they know I've been asleep for two hours by then? So I had the privilege of seeing it to start my day today. It's up, from .06 to .35.

This is still a very low number, not even into whole numbers yet. If you take the number by itself, it's great. But it's a big increase from where it was. Proportionally, it's more than five times what it was before. That's cause for concern.

My oncologist says that, at this point, it's more about the trend than the actual number. One rise does not equal a trend. But two would. The last time this happened, when Lupron alone started failing me last August, my oncologist wanted to wait a month and test again, to see if it's just random fluctuation, due to the fact that I still have my prostate gland continuing to produce the PSA protein. The hope was that the number would go back down, and we could stay the course for a while longer. But if you were following along at that time, you know what happened.

After a month, my PSA rose a second time, by a larger margin. That's when a new bone scan and MRI were ordered, and when metastasis to my spine and ribs were found. That's when I officially became Stage 4. At that point, we added Xtandi, which pushed my PSA down to the insanely low levels I've been enjoying since.

So I expect that my oncologist will want to do the same this time. Wait for a month, and test again. If the number goes back down, we're still good. If not, we've got a big problem.

My oncologist said when we started that he didn't know how much "mileage" (his word) I'd get out of Xtandi. But I certainly expected to get more than a few months. I've only been on it since the end of September. If this is more than random fluctuation, Xtandi was only effective in keeping my cancer under control for seven months. Less time than I got out of Lupron. This can be a pattern with very aggressive cancers. Each treatment gives you less time. My doctor calls it "burning through" treatments.

One thing I've heard from fellow patients, their caregivers, and from friends is the PSA is just a number. I shouldn't be bound by it, or defined by it. I shouldn't even think about it. Just live my life. Here's the problem with that for me. I understand that there are cases where the PSA number seems to bear no relationship to the progression of a patient's cancer, or in how they feel. But that's never been true for me. For me, the PSA has always been a very reliable indicator of the state of my cancer. When my PSA has been rising, my cancer has been advancing. When it's gone down, my cancer was shrinking. So I can't disregard that number. It's impossible.

I'm not one who stresses about each PSA test. I was fine yesterday. I'm just shaken up by the news today. But though I was wasn't worried, I did have a feeling. I've learned to trust my feelings in this process. They've rarely been wrong. And when my feelings have been wrong, it's been because they were overly optimistic.

I can think of one possible reason the number went up. When my PSA crashed to such low levels, I was on a full dose of the cannabis oil suppositories. For the past month or so, I've been on a lower, "maintenance" dose. I can't help but wonder if my cancer started growing again the moment I went to a lower dose. I'll ask about that tomorrow. It's the only variation that's taken place in my treatment that might explain it. So, assuming my doctor wants to wait a month and retest, if my PSA rises again, I think I'll try to go back to a full dose and see what happens. It's just a matter of paying for it. It's not cheap, and insurance doesn't cover it.

I'm trying not to blow this result out of proportion. Hopefully, it will go back down in a month and everything will be fine for a while. But I'm prepared for the opposite result, and for what it means. I won't go there in this post, other than to say that it feels to me like confirmation that the shorter prognosis I received back in September, when I wrote Life Expectancy, was correct.

This is probably completely unrelated and coincidental, but my left shoulder has been bothering me lately. It hurts when I move it in certain ways. I can't do upper body exercises when I work out. I can't sleep on that side because it hurts too much. It hurts to drive. For those who don't know my history, when I was first diagnosed, an MRI showed a suspicious spot on my left upper arm bone. It was later determined by several experts not to be cancer. It was thought to be some kind of benign tendonitis thing. But cancer couldn't be completely ruled out.

The telltale image from that MRI of my left shoulder

Now it hurts all the time. So I'm gonna say to my oncologist when I see him tomorrow, "You know this shoulder that you thought might have cancer, and decided it didn't? Well, it really hurts now." I wonder if the combination of pain in the shoulder that was the cause of so much concern a year ago happening right at the same time as a rise in my PSA will be enough for him to order a new MRI of that area to see what's going on. Or maybe, when I describe the symptoms, he'll think it confirms his tendonitis conclusion, and refer me to the right doctor for that. We'll see.

I was going to tell you about my last visit, when I got my blood draw and saw both a dental hygenist and my nutritionist, but it doesn't seem to fit in this post. I had a really good joke to add to that part too. But I don't feel much like joking today.

So much for my first birthday wish. It wasn't for a low PSA number, if you remember. The number is still low. My wish was that it would go down or stay the same. Instead, it went up by a factor of more than five.

I'm glad I get to see my therapist this afternoon. That will help a lot. I'm glad I have friends who I can talk to. And I'm so blessed to know that you're reading this right now. Your love and support makes this journey much easier.

It's easy for a prostate cancer patient to feel captive to that PSA number. No matter what the state of our cancer is, whether we've had surgery and our cancer is considered "undetectable" or we're Stage 4 like me, we're still subject to that test at regular intervals for the rest of our lives. And every time, we fear that number will rise. Don't tell me it's just a number. It's been too reliable in showing whether my cancer is advancing or retreating. I just hope this time is an exception. #waroncancer

Sunday, May 7, 2017

What I Want For My Birthday



Today, I turn 62. When you get to be my age, you're hard to buy gifts for. I pretty much have everything I need. I don't even want cake. I'm not much of a cake fan. So this isn't a gift wish list. But it is a wish list. There isn't a thing on this list that money can buy.

I'm already getting the best gift I could receive; Retirement. At the end of this month. I'm counting the days. Not really, but I'm pretty excited. So that doesn't even make the list. It's already in the works.

I'm going to limit my list to the "possible." Meaning things that don't require a miracle. So I'm not asking God, or medicine, or the Birthday Bunny for a cure for my cancer. I'm not asking any other time, so why would my birthday be different?

I'll start with something more modest. I get my next PSA test tomorrow. I want my number to stay the same or go down. It can't go down much further than .06, where it was four months ago. If it stays the same, I'll be happy with that. That would make an excellent birthday present. If it's up, even a little, it could be big trouble. But we'll cross that bridge when we come to it.

I want another year without pain. This is entirely out of my hands, but it's definitely possible. No miracle required. When my wife and I were with our friends in Santa Fe, it became clear to me what a blessing it is at Stage 4 to have no pain. I'll take as much of that as I can get, and I'm thankful for every day I have without pain.

I want to keep my medical team. This may prove the most difficult of all my requests, but it's of vital importance to me. I'm not one to seek treatment in different places. I'm not gonna travel to Mexico or the Mayo Clinic, or even the Cancer Center Of America for treatment. I like my doctor, my nurse, my nutritionist, my therapist, and every other member of my team. I trust them. I'm comfortable with them. That's an incredible blessing that many of my brothers don't have. On my 63rd birthday, I want to still be seeing this team.

I want the readership of this blog to continue to grow. The more people we have here, the better. There is strength in numbers. And there are many thousands who are affected by this disease who I believe could benefit from my testimony.

This is one area where you can help by sharing posts on your Facebook timeline and Twitter feed. A dream I have is for a post to go viral. Not to make me feel good, but to encourage as many as possible. To bring awareness of what this disease is like to as many as possible. To share the story of how God is using cancer to transform one patient's life with as many as possible.

I told a friend and cancer brother this week that I'd write whether I had ten readers or ten thousand. That's absolutely true, but it has so much more meaning when I know it's helping my brothers and their loved ones. So I want it to grow. I want to see a quantum leap in readership this year. Totally achievable, and I believe, inevitable.

Of course, I make no money from this blog whatsoever. I don't put advertising banners on it or use Google AdSense. That's not what this is about. It never has been.

I want more time with my loved ones this year. With each day that goes by, the fleeting nature of time becomes more plain to me. Every moment that passes is gone forever. So I don't want to miss a moment with those who are closest to me. If we are friends, and you want to know what I want for my birthday, the answer is time with you. There is nothing more precious than time. I've said for many years that time is more expensive than money. We can always get more money, but we can never get more time. That's especially true for me now. Remember, I don't know how much time I have, but neither do you. Let's not let too much time pass without contact. I need it desperately.

Tomorrow afternoon, we have our weekly Monday get-together with our close friend Nikki. This time, we'll be joined by our friends Deanna, (My Comedy Partner In Another Life and the one who introduced me to the supplement 5-HTP) and Margo, a friend and musical colleague for many years. Deanna calls it Mondays With Mark. I love that. This is the very definition of precious time. It also has the added benefit for me of being surrounded by four beautiful women for a few hours. Happy birthday to me.

I want to continue to feel good enough and strong enough to do the things I'm passionate about; Invest in the kids in the rock band school, turn this blog into a book, and contribute as much as I can to our new ice cream business. And while I'm at it, I want to continue to feel good enough and strong enough to enjoy my first year of retirement.

Take delight in the Lord, and he will give you the desires of your heart. (Psalm 37:4) Since my diagnosis, I've learned how to take delight in the Lord. Actually, there wasn't much of a learning curve. When God starts showering you with his presence like he has been for me, delight is putting it mildly. But even as I take delight in the presence of Almighty God, I don't think that verse means God has to grant my birthday wish list.

That verse is true because when we really take delight in him on a daily, moment by moment basis, our desires have a way of changing to match his. Mine have. So even if he chooses not to grant any of my birthday wishes; even if, this time next year, I'm in much worse shape than I am now, I'm okay with that. After experiencing him the way I have been for the last year and a half, I'm hungry for more. I know it's just a taste of what's to come. Because what I really want for my birthday is more of him.

So other than all of that, I don't want much for my birthday. Just a low PSA number, a continuation of feeling good, time with my loved ones, and more of God's presence in my life. And a Denver Broncos Super Bowl win. Oh wait, I'm only asking for things that don't require a miracle. Never mind. #waroncancer