Aimless, Useless, And Nauseous

I am not in a good place right now. My nausea has increased to almost debilitating levels. Still not vomiting, but I'm not far from it. We're going to try increasing my dosage again to see if that helps. It may help, but not for long. Band-Aids. Every medication I'm taking is a band-aid; a temporary solution. There is no permanent solution for any of this, except one.

When I met with my nurse on Tuesday, she said nausea is almost worse than pain. Both make you feel like "walking out of your body," as she put it. It seriously reduces my desire to live. I'm just being real here. It doesn't keep me from eating. In fact, eating helps. But it limits what I can eat. Sweets are out of the question. And I don't just mean candy and desserts. I mean any food that's sweet, except fruit.

I didn't realize how much of my diet was sweet until this started. Most breakfast items I like are sweet, including cereal. No such thing as savory cereal, hot or cold. Energy bars? Muffins? Sweet. That's why I eat a lot of eggs for breakfast these days. It's the one savory breakfast I'll eat.

Some wonderful friends threw a party for us last Saturday. But I was terribly nauseous the whole time. I covered it up as best I could, and had a great time anyway. But our hosts had ordered trays of cookies for the party, which I would normally have taken home. Not this time. I can't stand the thought of cookies, or any of the desserts I used to love. Even cookies have been taken from me. First coffee, then chocolate, now cookies.

I've also discovered that a savory food item increases my nausea; cheese. It's too rich. I love cheese, but I have to give it up. One more thing I love being taken away.

Speaking of things being taken away, I expect to lose my car soon. My license plates will expire, and we won't renew them. There's no point. It's hard to explain how troubling this is for me. I love my car. I've had my own vehicle since the 1980's. I make sure my car has a good stereo. That's very important for me. My wife couldn't care less about that in her car. So I can't lift more than twenty pounds, I can't go outside when it's slippery, and I'm about to lose the use of my car and have to drive my wife's car. It's emasculating.

But nausea and losing my car aren't the worst of what I'm dealing with now. The worst part is, I'm experiencing something I've never experienced in my life before. Boredom. As I keep crossing items off of my to-do list, I'm running out of things to do. I spend hours most days wondering what to do with myself. It's a new experience for me.

I've always had things to focus on; things that inspire me or motivate me. But I'm running out of those things now. In the 1980's, I had a boring job. I ran a printing press. Our boss would not allow us to have a radio. So what did I do to cure my boredom? I wrote an entire album in my head. My first album, Right Now. I had the lyrics, melodies, band arrangements, and song order in my head for over a year. I ran through the entire album, in order, in my head every day, several times a day. By the time I had my own recording setup, it was just a matter of recording it.

I've always had a very active thought life. I'm a thinker. Always have been. I've always had projects to work on, whether they be something I did on my own, or to make a living. I've always had a sense of direction and purpose. That only increased when I got cancer and saw God. Since then, I've been driven by a sense of purpose, whether it be writing this blog, or working with The Littleton Conservatory Of Rock, or my work with the band Wik. I had my book to finish, as much as I could. But these things are falling away, one by one.

I've finished my last show with the Conservatory. By the time they begin rehearsals for their summer show, it will be too late for me. My symptoms tell me that, and so does my heart. My book is up to date, and manuscripts are in the hands of proofreaders now. When I get them back, I'll have some work to do, but that won't last. My role with Wik is just as an adviser now. I love being with them, but it's only once a week, and I have no music to learn. I won't be onstage with them at their next gig on March 16th, and that's as it should be.

As for this blog, I can't write every day. I can only write when I have something to write about. Rule #1 of creative writing is have something to say. I can't just write to write. Some have suggested journaling for myself, but that doesn't appeal to me. I need an audience, even if it's just an audience of one, as with an email or text. I take great pleasure in writing beautiful emails to people, but I run out of those too. I'm a born performer. I can't do anything without an audience, including die.

The trouble is, over the course of my cancer journey, my tastes and desires have changed. TV shows and movies hold little interest for me. Same goes for the books I used to love to read. I've also lost interest in new music and social media. Now, I need to be inspired. Very little of current entertainment inspires me, even the stuff that's supposed to be inspiring, like the Olympics. I got bored with the Olympics after about three days. What inspires me is writing, working with my young musician friends, and being with my loved ones. There's just not enough of that go around now.

So I find myself bored a lot of the time. I don't know how to deal with it. It's new to me. Random pastimes don't interest me. Only things that inspire me can give me that sense of direction again. When those things are in short supply, I feel aimless and useless.

The combination of nausea and boredom is deadly. Boredom makes me feel like I have nothing to do, and nausea makes me not feel like doing anything. The inability to do the things I used to do makes me feel like I have less value. The act of crossing things off of my to-do list, while satisfying at the time, makes me look at the remaining list with despair. Only one or two items remaining on it. I feel like I've done my job, and my work is finished. Losing my car is just one more piece of my life falling away.

I'll be honest. The accumulation of all these things makes me wish this whole process would hurry up. I'm about finished with my work, and I've accomplished my purpose, as much as I can. I'm ready to be done.

Don't tell me to write more songs. I'm not inspired to do that, and I've sold or given away all of the musical equipment I need to do it. When my book is in its final form, except for what will be added as I pass from this life, I'll be limited to what I write in this blog about once a week. After Wik's show on March 16th and the Neal Morse concert here in Denver on March 17th, I don't expect to leave the house much. I am one new symptom away from being knocked flat on my back permanently.

You may be asking, what about God, Mark? Doesn't he inspire you? Yes, he does. But I guess my relationship with God is not what it should be either. As wonderful as it's been, it hasn't kept me from being bored or nauseous. Right now, it feels like God is making me wait. I tap my foot impatiently while he decides when it's the right time to call me home.

This post will not make anyone happy, including me. It's not very inspiring. But it's the truth, ugly though it may be. I'm not doing great these days. I feel aimless and useless, as though my life is crumbling in front of me. Nausea makes me feel like my body is failing. I had this idea that, once my work was finished, it would be a short walk to Glory for me. Instead, it's more like a waiting room. I'm holding number 487, and they just called 36. I'm ready for this wait to be over. I'm tired of feeling sick. I'm tired of waiting with nothing to do. I'm ready to move on.

I may feel directionless, but I do have a direction. I'm on my way home. But I'm starting to wish I was making better time. #waroncancer #bearingwitness

My Sharon

Many people ask about my Sharon. In the comments of almost every post recently, someone asks how she is doing. So I think I should tell you about her, and how she's handling all of this. The short answer is, she's handling it brilliantly. That's what she does. Let me tell you about my Sharon.

My Sharon is a towering figure of strength. I've rarely seen her cry about this. She's taken it in stride much as I have. There's a reason we're so well matched. Nothing much fazes us. Yes, there have been times when she's broken down. But it's only happened once in my presence. She saved her emotional outbursts for when I wasn't around. She didn't want to put that on me. I wish I could say the same for myself.

In comments on Facebook, I get a lot of "poor Sharon" reactions. Her response to that is, "It's not poor Sharon now. Later, it will be poor Sharon." She's tough.

My Sharon is still hot at 61 years old. Not just to me, but to everyone. Will anyone dispute me on this? I doubt it. If you do, you're blind. Here's what you don't know, unless you know her very well. She isn't naturally thin, like I am. She has kept her figure all these years through discipline.

My Sharon makes amazing meals like this in ten minutes without even trying.

We eat meals like this at least two or three times a week. You should be here when she decides to "fancy it up," as she would put it. She eats and cooks very healthy, and has for decades. This is a big reason why I'm doing as well as I am, because she has fed me so well over the years.

I used to be a big help in the kitchen, and I still clean the kitchen every morning, but I used to help her a lot with "food prep." Not so much anymore. Now, my Sharon does it all herself so I can save my strength.

My Sharon is good at math, which is a wonderful thing, because I am not. She's downstairs paying our bills right now, bless her heart. If that was up to me, I'd probably be in prison for some math error.

My Sharon retired from her job of 25 years to stay home with me during this long journey. I've been very busy, and have left her home alone a lot, I'm afraid. I will soon leave her home alone permanently. But she understands my need to mentor and be with people. We spend at least a couple days a week at home hanging out, just us and our pets. While I meet with many others, there is no one I'd rather spend time with than my Sharon.

My Sharon has already, to a large extent, done her grieving. I watched her go through the stages of grief; Denial, anger, bargaining, depression, and she arrived at acceptance some time ago. She's had counseling, which was very helpful. But now, she doesn't think she needs it as much anymore, and has cut back her therapy to every other week instead of every week. I still need mine every week.

My Sharon faces this as fearlessly as I do. This is a blessing I do not take for granted.

My Sharon has a plan for her future without me. She's has floor plans drawn up for a place she'll have built, and will sell this big house as soon as she can. Property values in our neighborhood, and in the whole city of Denver, are sky high. That will help her.

My Sharon has cultivated a group of friends who will support her and be there for her. With those people around her, and with the financial security she'll have from the sale of this house and the insurance money, she won't just be fine after I'm gone, she'll be awesome.

Of course she will mourn my loss and miss me. But as I said, most of her grieving is already done. If you're afraid she might fall apart when I die, you don't know my Sharon.

I am attracted to strong, independent women. There are none stronger or more independent than she is. She will take my death in stride, like she has everything else. She is strong, smart, independent, beautiful, talented, and organized.

How is she doing? She's not just dealing with this as well as could be expected, she's dealing with it better than anyone could expect. Anyone but me, that is. Because I know my Sharon. She's got this. She is strong, and will only get stronger. That's how she's doing. That's my Sharon. #waroncancer #bearingwitness

Letting Go

You may not like this post. But, as always, I must tell the truth. I must bear witness.

For the past two weeks, I've been losing weight. Not intentionally, but my weight has fallen incrementally each day, with no change in my diet. I now weigh six pounds less than I did two weeks ago. This appears to be a trend.

Six pounds may not sound like much to you, but for a naturally thin guy like me, whose resting weight is around 130, it's a lot. It seems to be a symptom, but I'll watch my weight for the next few days and talk about it with my nurse on Tuesday. Last Tuesday, my weight was down by four pounds. Now, it's six. If the trend continues, I'll be south of 125 by Tuesday. (Note: I weighed 124.5 this morning, Sunday)

I was warned when I entered hospice care that uncontrollable weight loss was coming. I don't know if that's what this is, or if it's something else. I've struggled with unintentional weight loss twice before, when I was in treatment. Then, I thought it was a side effect of hormone treatment. The shots I was getting caused numbness in my abdomen, and I lost the ability to feel hungry for a while. I saw a nutritionist both times to help me correct the problem. Her program worked for me, so I know how to fight this. The question is, do I want to?

My appetite is not what it should be, due to the omnipresent nausea that's just under the surface. If I forget one pill, it comes right to the forefront in waves. That's one obstacle to gaining weight, but not the main one. The main one is my desire to fight. I'm sorely lacking in that desire right now.

Leading up to the benefit concert a week ago, I had a distinct sense of "hanging on." But now, though I have two goal dates to come, March 16th and 17th, I can feel myself letting go. It's not a conscious decision on my part. It seems to be happening on the subconscious level. Something inside me is tired of hanging on, and wants to let go.

Consciously, I want to hang on for those events in March, just over a month away. I believe I will make it to both events, but I can't be sure. I know all it will take is one more major symptom to knock me down and make it difficult, if not impossible, to leave our house. That symptom, whatever it turns out to be, is made more likely by the fact that I seem to be letting go.

I remember many instances where I had a performance coming up and a cold coming on at the same time. Most of the time, I've been able to get myself through a performance by sheer will and adrenaline, and then after the performance, my body let go and the cold came on with full force. I can't help but wonder of that's what's happening now, only on a more serious level, and with finality. I have no more performances coming up. Both of the events in March can happen with or without me. I want very much to be there and intend to be there for both events, but I can't seem to stop letting go.

I bought ice cream and milk yesterday so I can make protein shakes for lunch. I don't normally eat lunch. I'll try to make myself one this afternoon, but I don't want to. The idea of forcing calories down my throat is not appealing at all. I'd rather wait until I'm hungry to eat. But hunger may not come until closer to dinner time. And my weight will be less tomorrow than it was today.

I know you want me to fight. But fighting is not part of hospice care. Hospice care is about facing reality. It's about recognizing and being at peace with what's to come. I am at peace with that, and have been since I was diagnosed. I went through two years of treatment, of "fighting." I don't want to fight anymore. I want to let go.

A dear friend of mine had a dream about me and another friend of hers who has prostate cancer. In her dream, the three of us were in a room filled with doors. The other guy and I were looking at the various doors. Finally, we ended up at opposite ends of the room, about to open the last two doors. Suddenly, my friend knew that if we opened the doors, we would die. She began shouting at us, begging us not to open the doors. The other guy looked at her and backed away from his door. But I smiled at her and opened mine. When I opened the door, a brilliant light came shining through. I gave her an even bigger smile, and stepped through.

My friend hated the dream, and her friend got chills when she told him about it. But I love it. I think it's beautiful. I believe it reflects my attitude toward this perfectly. I would step through the door into the light. I would not hesitate to do so.

Our church had a silent prayer service this week. They have those about once a month. It was my first chance to attend one, and I looked forward to it. Quiet music played while people stayed in their seats as we prayed and meditated. Church staff members would come by at various intervals, place their hands on the shoulders of those who agreed to be touched, and prayed silently for each of us individually.

We were given a card on which to write any specific prayer requests. "Relief from cancer symptoms" was what I wrote on mine. It was a very emotional experience, almost overwhelming at times. During one of the times while staff members were praying over me, I found myself telling God I'm ready to go home. I didn't mean to say it, it just came out. I was letting go.

I know you want me to fight to stay here as long as possible. But before long, I will see the door with the brilliant light coming through every crack around it. When I see it, I will open it and step through with a smile on my face. I will let go. I've already begun to do that, and I can't seem to stop.

My work here is pretty much done. My book is up to date, I've finished my work with The Littleton Conservatory Of Rock, and I'll no longer take the stage with Wik. I'll continue to go to rehearsals and mentor them from the Grandpa chair they've set up for me, but as I've said in past posts, they don't really need me there. They have arrived. Their future is bright, and I won't be there for most of it.

My memorial service is put together. The memorial program is written. The speakers and singers have been chosen, and the other elements of the service are in place. There's nothing left that needs to be done, other than possibly compiling a potential second book. And write down a couple of movie ideas I have, just in case someone wants to make them at some point. But all of that can be done from my bed, if necessary.

I don't believe this means I'll die in the next few weeks. But it does mean the process has begun in earnest. I know you don't want to hear this. I don't want to say it. But I have to. It's the truth. I've hung on for as long as my strength has held out. I can't hang on anymore. I need to let go. #waroncancer #bearingwitness

One More Time

I performed onstage one last time on Saturday. It was an inspiring and emotional day. I sang and spent the day with some of the most important people in my life, and awareness was raised about prostate cancer, and how important it is to get your PSA checked, and to know what your PSA score means.

It was a day of making connections with some, and being together for the last time with others. Many goodbyes were said. A day of highs and lows.

On one level, it was a rock concert. The winter show for The Littleton Conservatory Of Rock was a resounding success. The musicians, ranging in age from nine to nineteen, were polished and professional. A big crowd turned out, larger than any LCR show I'd seen before. I was excited. This would be a day to remember.

Friends traveled from out of state to be here. One was a couple from Iowa who I'd met in the Prostate Cancer Support Group on Facebook. Another was a friend I'd met at Morsefest, who came here to support me, see the show, and spend some time with Sharon and me. I was very honored that each of these friends traveled such a distance to be here.

I'm the vocal coach for the Conservatory. I've been doing that for about a year and a half, and it's one of the great passions of my life. I talk about it often in this blog. When we began rehearsals for this show last November, I told the kids this would have to be my last show, due to my health. The next one won't be until summer, and I don't expect to be able to participate then.

I told these young musicians I wanted them to make this show the best one we've ever done, this being my last one. The only way to do that is through preparation, I told them. They responded, and were more prepared for this show than I've ever seen them before. Music stands went unused for the last few rehearsals. The bands were tight. The singers were polished. I was very proud.

But while it was a rock show, it was also a concert to raise awareness for men's health, especially the need for men to get their PSA tested to see if they may have prostate cancer. It was important to me to communicate that to the men who were there. Vouchers for free PSA tests were contributed by a local health fair. I made a speech about it. Shocking, I know.

I began by giving credit to the kids for all the work they had done. The tickets said, "One More Time... For Mark" on them, but I made it clear that, while the show may be for me, it wasn't about me. It was about those kids. Then I told my story. My cautionary tale.

I told how not paying attention to my PSA score for years led to it being suspiciously high, and how skipping my PSA test for just one year was enough to push me from the operable and curable category to the inoperable and incurable one. That period between 2013 and 2015 was when the unstoppable, more aggressive version of my cancer made its appearance. I told them that, as a result, I am now in hospice care. I hope that got their attention.

I pointed them to the vouchers we had available. I told the men they were all the right age, and that there should be no vouchers left after the show. I asked the women there to grab one for their husbands. This event was not about me, it was about saving lives. And rocking the house while were at it.

The final, full-band version of Dear Prudence followed my speech, but not before I bragged on my friend Cole, and told about the previous two videos I'd made of that song for my friend Cindy. What a thrill it was to perform that song with that band. My friend Todd, who runs the Conservatory, gave me an awesome band for my one solo. Including the singers I call my Dynamic Duo, Payton and Ally. I can't think of a better way to leave the stage.

I know many have gotten the impression that I've said this before. If I left the impression that I would never take the stage again for any reason, that wasn't what I meant to say. But now it is. Performing costs me too much now. It takes too much energy. It's exhausting if you're doing it right, even in perfect health.

In addition, there will be no opportunity for me to perform in the future. The LCR summer show doesn't begin rehearsing until June, and as I said earlier, I doubt I'll be in any shape to participate by then. If I'm even still here, which to be honest, I have doubts about. I'm just being honest about how I feel.

I will continue to work with the band Wik, but I won't take the stage with them again. I feel strongly that it's time for them to do it on their own. They don't need Grandpa onstage. Trust me on this. I'm happy to be the video guy, and their biggest fan.

No churches are asking me to come sing at their church, and I'm fine with that. At this point in my life, I'd rather just go to church and worship than have a gig during church. It's what I need for the rest of my life. Just to be a worshiper rather than trying to be a rock star.

I spent a lifetime trying to be famous. I did music to try to make that happen. It never did. A friend told me last week, that it's like God is saying, "Well, here you go, Mark. This is what you'll be famous for." I like that. I like the idea of being famous for being a blessing rather than a star. I like the idea of being famous for making a difference. I hope that's what I'm doing.

I think I've made a difference in some young lives. After the concert, one by one, they came up to me to say their goodbyes. The first was my friend Lacey. She said the misty look in her eyes was for a different reason, but there was some emotion in that moment. She is special to me. When she walked away, I realized we had just said goodbye, maybe for the last time. I welled up. The next hour was one kid after another telling me how good it had been to work with me. I said goodbye to kids I love that day.

It was hard, but it was good. It's a blessing to be able to say your goodbyes. So many never get that chance. That's why I was glad to have this one last show. One more time... for Mark, but not about him. It was about saving lives and making a difference. And love. It was all about love. #waroncancer #bearingwitness