Train Of Thought

I know, I haven't been saying much. I can't a keep train of thought going. I keep losing my way. The problem seems to be the medications they have me on right now. Pain meds are good and bad. Good because it takes my pain away. Bad because it makes me sleep - a lot. Not that I mind sleeping a lot. Especially when the medication I am on is a synthetic form of morphine. Morphine is great for taking away pain, but it does it makes you very sleepy. Sometimes my posts got so few and far between, my Facebook followers wondered aloud online if I was alive. I tried to reassure them I'm still here.

The latest addition to my wardrobe is a "pain pack." I wear it 24/7 to relieve my pain. It was a necessary step. It sends morphine in a constant supply to my bloodstream. I'm also able to press a button for "boosts" as needed. I try to avoid those, as they make me lose my train of thought. They send me straight to bed, as well.

I also find myself using a walker these days as well. I call it my "Speedster." It's not fast, but it is a great help getting in and out of chairs.

My living space is shrinking. I don't use the stairs much anymore. I'm pretty much confined to my bedroom, bathroom, and the bottom level of our house. I'm no longer allowed to get up to use the bathroom by myself at night, either. I can't get out of bed without help anymore. I'm pretty helpless.

I've also had to learn the challenges of assisted showering. That's the hardest part for me. I may need an assistant for that soon. Sharon helped me with a shower this past week, but Hospice can supply me with a CNA (Certified Nurses Assistant) who could help me with that in bed, like a massage. I may need that. It's hard for me to get clean on that shower stool.

I tried an air mattress in bed but didn't like it, so I'm changing back to the foam mattress I was using before today. They should have someone here to change it for me today. That's one good thing about Hospice, they're fast.

With the nice weather, its been possible to have meals outside, which has expanded my living area a bit. When you're limited to three rooms, I'll take what I can get.

I have to say something about Sharon. She's been amazing. For one thing, I had no idea how physically strong she is. Every time I need to be lifted into my walker, she does it. But that's just one way she "lifts me up." In an instant, it seemed, we went from me still being able to take care of myself most of the time to not being able to get out of bed without help. She's not missed a step. Soon, she will need help with me around here, at least some of the time. But you wouldn't know it when you talk to her.

I will need to wrap up this book soon, and our life together. But I can tell you one thing for sure. I would never have have made it this far without her.

So though I didn't intend for this to become a "Goodbye post," or the ending to this book, maybe that's what it should be. It doesn't seem like I'm gonna get any sharper, so here goes. I love my wife. I have loved my life. I love my Lord, Jesus Christ. I love the ministry this document has become. It's my sincere hope and prayer that this ministry will continue. So in that spirit, let me close with this passage of scripture.

Psalm 150 is a defining psalm for many musicans because it names so many of the early instruments. I wish I knew what their version of the resounding cymbals sounded like, but I'm sure it was much different than ours.

Psalm 150

Praise the Lord.

Praise God in his sanctuary;
    praise him in his mighty heavens.
² Praise him for his acts of power;
    praise him for his surpassing greatness.
³ Praise him with the sounding of the trumpet,
    praise him with the harp and lyre,
⁴ praise him with timbrel and dancing,
    praise him with the strings and pipe,
⁵ praise him with the clash of cymbals,
    praise him with resounding cymbals.

6 Let everything that has breath praise the Lord.

Praise the Lord.

Unlike our prayers, They began by praising God in his mighty heavens,  for his acts of power and for his surpassing greatness. I didn't even get around to those things today, did you?

I'm sure the instruments listed in verses 2-5 sounded much different than what we have today, but the spirit with which they were were played was much the same.

But then they got to the closing line every congregation who quotes this Psalm should do so with great enthusiasm;

6 Let everything that has breath praise the Lord.

Praise the Lord.

I still have breath in my body, therefore I will praise the Lord.

The Loss Of Independence

It happens to all of us as we age, but it's happening to me at an accelerated pace. What I used to do easily I now need help to do. I am slowing down. It's become noticeable when I'm with people. My reaction times are slow. This has resulted in a major milestone for me; I can no longer drive.

If I want to go somewhere now, even to the corner store, my wife needs to drive me there. It's a necessary precaution. I won't allow my pride to be the cause of an accident.

I also no longer cook for myself. It takes too much energy, and energy is in short supply these days. I am still able to feed myself, dress myself, shower, shave, and do all those other personal tasks most of us take for granted. But one by one, those will be taken from me as well.

My car will soon be sold with expired plates, and my driver's license will expire. No need to renew license plates or my driver's license when I can no longer drive. But honestly, I no longer have the desire to leave home much anymore. I feel more secure in my home, and prefer to stay here.

This is the opposite of how I've felt for most of my life. I'm a social type, and have preferred to go out and be with people, even if it's just a run to the store. But my feelings about this have changed. I'm happy to have people come visit, but prefer short visits to longer ones. I'm not the social animal I used to be.

I tire easily. I take frequent naps during the day. I run out of energy easily. This is not the me I remember.

We have a new addition to our home; my hospital bed. It's not as comfortable as I was hoping for, but it will do. I already spend more time in it than out of it.

The loss of independence is difficult for many, but I think I'm adjusting to it well. It's easier to adjust to needing a ride somewhere when I don't have that many places to go. It's easier not being able to cook for myself when Sharon is here, ready and willing to cook for me if I need her to do so. She's a much better cook anyway.

It's a natural part of the process, losing our independence. But it's good to learn to depend on others. I'm just glad I have someone I can depend on. Doing this alone would be much harder. #waroncancer #bearingwitness

Frail

A friend recently told me I look frail because of the weight I've lost. My weight is at its lowest point as an adult. It's hovered around 116 pounds for the past two weeks or so. Sorry you had to see my deformed toes.

A volunteer will soon come to install a grab bar in the shower for me. In order to receive this service, I had to answer some questions. One of them was, do I consider myself frail? I had to answer yes. I am frail. The lower my weight drops, the more frail I become.

I'm no longer able to do things in the evening. My nausea becomes too much after 6:00 PM, so going out to dinner is no longer an option. I can't drive long distances anymore. I'm too weak for that. The combination of nausea and weakness severely limits my ability to do things I used to love. I don't want to put myself in a position where I might have to vomit by the side of the road or in a public restroom.

Wearing jeans has become a problem too. It's too restrictive on my stomach. At home, I wear sweat pants for comfort. But I refuse to wear them in public. I don't see the point of buying new jeans either. I don't expect to be going out that much longer anyway. I was so weak yesterday, I couldn't even make myself breakfast, and had to go back to bed about a hour after I had gotten up.

When I realize how much I declined in March, I can't help but wonder how much I'll decline in April. Will I still be able to eat solid food at the end of the month? Will I be able to go out at all? What unforeseen symptoms will begin? How much weaker will I get? How long before I can't bathe or dress myself? I'm frail now, and that will only increase.

The slow decline my doctor predicted is happening. To be honest, I wish it would happen faster. I have no interest in this process dragging on for many more months. It's no fun. A quick decline would be preferable, at least for me. I'm ready for this to be over.

I know you don't want to hear this. But as always, I must tell the truth. I think any one of us would prefer a quick death to a slow one. I know I would. But I don't get that choice. My body is still inclined to hang on. My otherwise good health is now my enemy.

The word frail reminds me of an old hymn, O Worship The King by Robert Grant. One of the verses says:

Frail children of dust

And feeble as frail

In Thee do we trust

Nor find Thee to fail

Yes, I am as feeble as I am frail. But I don't have to trust in my own strength, or lack thereof. It's in God that I trust, nor have I ever found him to fail. It's not for me to say how long or short my life will be. Those things are in his hands, and he will take me home when he is ready. Until then, I am increasingly frail. #waroncancer #bearingwitness

My New Normal

Normal has been redefined for me in the past week. It began last Friday, when I left for a rehearsal after having eaten a burrito for dinner about thirty minutes prior. Before I had driven a block from my house, I began to realize I was going to vomit. I turned the car around and headed back to my house. As I pulled into the garage, I knew I'd never make it to the bathroom. So I decided to try for the trash can outside. I didn't get there, and ended up losing my dinner in the driveway. A wonderful way to make a first impression on my new neighbors.

Needless to say, I did not make it to rehearsal. I spent the rest of the night in bed, exhausted and weak as a newborn kitten. This was my first sign that the new rules of eating for me had begun.

Saturday morning, I made a small breakfast for myself, about half the size I would normally make. I also could not keep that down. After losing two straight meals, I called my nurse. A new prescription was ordered. The new medicine helped, but not enough. It keeps happening, though not every meal or every day.

The main problem seems to be quantity. I can't eat more than a third of what used to constitute a meal for me at any one time. Most of the time, if I limit my portions to light snack size, I'm able to keep food down. But not all the time. Occasionally, something that's been okay for me in the past serves as a trigger. Once this week, it was orange juice. One night, it happened when I took my pills before I went to bed. It took me two naps the next day to recover from that.

As a result, I'm eating much less than before. My weight is crashing. I now weigh less than I ever have as an adult. Gaunt Cancer Guy is on his way. I'm also very weak. I don't have the energy I need to do things that used to be easy for me. Like writing this blog.

Vomiting is hard work. A friend called it "a violent act" this week, and it's true. It seems it have become a regular part of my decline. During all those weeks of nausea, I never vomited until a week ago. Now it's happened five times in a week.

I have two important events this weekend. Last night, the band Wik had a show. Their set began at 8:30 PM, when I would normally have been in bed. But I was there, and adrenaline and my love for that band got me through it. Then tonight, I'll be at the Neal Morse concert here in Denver. It's not one I can miss, as I've been asked to sing onstage with Neal and Eric Gillette, two of my heroes. There's no way I'm missing out on that, so I will be there, for sound check and the show at 8:00 PM. Another late night for me.

But after that, my commitments end. It's actually a relief to have little or nothing coming up on the calendar. This new spike in my main symptom makes it difficult to plan. Even eating out becomes problematic when you can't eat. No restaurant makes portions as small as I need them. The prospect of an emergency run to a public restroom does not appeal to me. So I eat at home, in very small amounts. This is my new normal.

I'm told it's normal to eat less and lose weight as part of this process. I just didn't know it would include this one unpleasant special effect.

I wrote the first paragraph of this post yesterday morning, and could not finish it until late that afternoon, after those two naps. Writing is exhausting. So one thing I need to start doing is making these posts shorter to save my energy. That begins with this post.

I feel like this is a major update. My inability to eat will contribute to my decline. It seems to me a turning point has been reached. I don't write this for sympathy, or to complain. This is what it's like to die of cancer, at least in my case. This post has not been very nice, but neither has my week. I hope things improve, but it doesn't seem likely to me. Thank you for hanging in there with me as this road get rougher. #waroncancer #bearingwitness

The Withering

I met someone who became one of my closest friends in December of 2015, shortly after my diagnosis. I have learned over the past two years how perceptive she is. She seems to see things others cannot see. I have experienced this personally. She calls herself an empath, and I believe her. I've seen too many examples of it not to recognize her abilities. Last summer, she told me she could see I was dying when we first met in 2015. She told her husband as much when they left our home that December night. When she told me this last summer, I had begun to feel like I was dying a month or so before. When I asked her what she saw, she replied, "a withering."

I see and feel this withering every day now. The longer I remain in hospice care, the more pronounced it becomes. I was tempted to place a shirtless picture of myself at the top of this post, but I decided to spare you that, and spare me the embarrassment. What few muscles I had are now shriveled. I look like an elderly man. I'm losing weight at a gradual but steady clip. Like a long stem rose a week after Valentines Day, I am drooping. I'm withering.

It's more than physical. You may have noticed I don't write as often as I used to. I feel obligated to write something every week or so. If I don't, people wonder if I'm still alive. But honestly, I'm running out of things to write about. I don't want to keep complaining about the foods I can't eat and how bad my nausea is. But ideas are hard to come by when there's no medical news. And there's precious little of that.

As the foods I can eat diminish and the pills I take increase, my desire to keep putting one foot in front of the other decreases with each passing day. I told my doctor how I was feeling and when I thought I might die, and she said she sees a slower decline for me. This was not what I wanted to hear, but I understand why she said it. My heart rate and blood pressure are still strong. My breathing is still clear. I'm still able to take the stairs. Other than cancer, I'm in very good health. Other than that one thing. Other than that one thing, how did you like the play, Mrs. Lincoln?

It seems as though this old body will continue to hang on for a while. The steep decline I foresaw seems unlikely now. Instead, it will be a slow withering. My energy level is waning. I'm not up for attempting bucket list items like trips or even going for walks. I take lots of naps and sleep more than I did when healthy. Exercise is out of the question.

I still have rehearsals with the band Wik to attend, but at the rate at which I'm losing weight, I may not be able to keep that up for long after their show on March 16th. I told them at a recent band meeting that I'd keep coming to rehearsals for as long as I can, but I refuse to be The Skeleton In The Room. When I've withered to that point, I'll stay home.

I have an exciting, unexpected musical opportunity on March 17th, the night after the Wik show. I expect to be good to go for that, but after the 17th, I don't see any other opportunities to perform. Nor do I have the desire to do so after that. Even my desire to perform is withering.

My friend came over for a brief visit last Saturday. I told her how my work here is wrapping up. There is very little left for me to do. In a moment of frustration, I said, "I'm ready to be done." She called it part of the withering.

Instead of the picture of roses at the top of this post, I should have used a picture of the withering peach tree in our back yard. But I'd need one while it's in season to really show the effect. It was damaged in a snowstorm in 2003, and has never fully recovered. Roses wither much more quickly than trees. That tree continued to produce fruit for a few years after it was damaged. But after a while, it stopped blossoming. Whole sections of the tree died while others continued to grow leaves. Gradually, fewer and fewer branches showed any signs of life. This year, I don't expect it to leaf out at all.

It won't take me fifteen years to wither like that tree, but it's a gradual process. Much more gradual than I would prefer. But it's not like I have a choice. My relative good health was a bonus while I was in treatment, but it's slowing the process down now.

It's not that I'm anxious to die. But I am ready. By the end of March, everything on my to-do list will be completed. Then it will be a matter of waiting and withering.

I visited a friend in the hospital yesterday. He told his nurse about me, and I explained my condition to her. She complimented me on the "grace" she saw in me. I hope you see some grace in this post. Yes, it's not a pleasant topic. But I have to tell you the truth. I must bear witness. Today, I bear witness to the withering of my body, my desires and my sense of purpose. When April comes, it looks like I'll be adrift, with little to do and little to write about.

Maybe God has something planned for me that I know nothing about. I hope so. I hope he inspires me to write on a level I've never reached before. But it doesn't seem like that's coming. I feel like an old watch that no one can wind up again. One that keeps ticking slower and slower. But this watch has a really big spring. One that will take months to stop ticking completely.

My friend saw it more than two years ago. I can feel it all the time now. God grant me the grace to face the withering, and the words to describe it in a more inspiring way than this. #waroncancer #bearingwitness

The End Of Cravings

I no longer crave foods I used to love. I miss some of them, but I no longer have any desire to eat them. It's easy when they make you nauseous. But before I explore that further, I should tell you about my visit with my hospice doctor.

I met my doctor face to face for the first time on Tuesday. She's very gracious and kind. It was a delight to be with her. She was able to reassure me about a major concern I had. We've now increased the dosage of my nausea medication twice, and added new nausea meds to the mix. My nausea is a symptom of bone metastasis. Those bone mets keep growing all the time. It seems likely to me that, as the cancer in my bones spreads at an ever-increasing rate, so will the nausea it causes.

I had a scenario playing in my head that involved my nausea spiking to unbearable and uncontrollable levels, until I can no longer keep anything down or get out of bed. One where I simply waste away because I can't eat. Short of paralysis from a spinal compression, this is a worst-case scenario for me. The doctor dispelled my nightmare scenario with one sentence: "You'll die before that happens." Meaning the cancer will get me before the nausea does, and they'll be able to control it until then, one way or another.

This is comforting to me. It's very important to me that my symptoms be at least somewhat under control, as much as possible, until I die. It's not shocking for me to hear my doctor say I'll die before my symptoms overwhelm me. It's reassuring.

I've mentioned several foods I've had to give up in past posts. It started with coffee. Then I had to give up chocolate. Then sweets in general. The next one was cheese. That was a hard one. Most recently, a favorite Vietnamese soup called Pho had to be crossed off the list because it's made with beef broth. Some of you know my wife and I stopped eating beef decades ago. When you don't eat beef, your body loses the ability to digest it. Until recently, beef broth didn't bother me, and I was able to enjoy this delicious soup. But things have changed.

I had some Pho last week, and was sick for the rest of the evening and most of the next day. So while I will miss being able to eat this soup that was a favorite of mine, I am no longer tempted to try it again. Once I get sick on something, I never want it again.

Most of us are familiar with this phenomenon. We eat or drink something, it makes us nauseous, perhaps causes us to vomit, and we can't stand the smell of it for the rest of our lives. I had this happen with a favorite brand of canned chili in the 90's. I never went near it again. I won't even tell you about my experience with whiskey in the early 80's, but it was bad. I never wanted whiskey again.

Pregnant women experience this. Things they once loved are no longer allowed in the house, at least until after their nausea passes. But in my case, it's permanent. Every food that's been crossed off my list will remain absent from my diet for the rest of my shortened life.

But it's okay. Just like that canned chili and Jack Daniels, I have no desire to eat the things that make me nauseous. I may miss those things, but I'm not tempted to eat them. Do I miss chocolate? You'd better believe it. But am I tempted to go to my favorite chocolate shop and get some dark chocolate clusters? Not on your life. I know what would happen if I ate them.

The hardest one is cheese. You don't realize how pervasive cheese is in so many of the foods we love until you have to give it up. But am I tempted to eat a hunk of cheese? No way. I made an egg sandwich on a bagel for breakfast this morning, and couldn't put cheese on it. There was one moment of regret when I realized this, but I had no problem leaving cheese off the sandwich. I woke up nauseous this morning, as I do many mornings. I knew what my day would be like if I melted cheese over that egg.

I have a big bag of M&Ms in my pantry, left over from Christmas. I have a weakness for plain M&Ms. But I'll never finish that bag, nor will I ever open it again. It's not even appetizing to me.

What do I crave now? Celery, baby carrots, and strawberries. Boring, right? But right now, when I want a snack, or need to take pills, that's what I want. Toasted bagels are good too. I need something in my stomach most of the time now, because any type of stomach discomfort, including hunger, feels like nausea. Heartburn also feels like nausea.

The good news is, if I wake up with my nausea under control, I can still have some coffee once in a while. But only if I wake up feeling good. Those days are in the minority. As time goes on, my bad days outnumber my good days.

I know I'm nowhere near the end of the list of foods I'll have to give up. From what I hear, the closer you get to death, the fewer foods you'll eat, until you pretty much stop eating completely. But at least I don't crave the foods I have to give up. That's a mercy. If I did, it would make this much harder. So I'm thankful I don't want the foods that make me nauseous. They all sound like that can of chili to me now. When it comes to cravings, I'll stick with what sounds good to me. It's the only way to get through the day. #waroncancer #bearingwitness

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

Weakling

I've never been much of a he-man. I've always been the guy who did his best to keep his shirt on at the beach, embarrassed that I didn't have much in the way of muscles. Lifting heavy objects has never been my strong suit. But now, after more than two years of hormone treatment that gave me osteoporosis, and a spine full of cancer compromising the strength of the bones in my spine, not to mention the cancer in my hip bone and tail bone, the problem is much worse. Now, I truly am a weakling. I just hope some bully doesn't decide to kick sand in my face.

I'm not allowed to lift more than twenty pounds at a time. This comes into play more than you might realize. I went to the pet store yesterday to buy dog food. We have a seventy pound dog, so buying dog food in small bags doesn't make much sense. I've always bought large bags, which weigh from 25 to 35 pounds. So I had to ask for a manager and explain my condition. I asked if they'd give me the large bag price for two smaller bags, which weigh less than twenty pounds each. He agreed, but now, every time I go there, I have to make sure there's a manager handy to validate his offer. And frankly, as a man, it's embarrassing to have to ask for that.

We had a rehearsal for The Littleton Conservatory Of Rock here at our home yesterday. I love having rehearsal here. It's so much fun. But I can't participate in load-in or load-out much, nor can I help set up as much as I'd like. Forget about moving a speaker six inches. Not allowed.

You know what else isn't allowed? Jumping. Not that I jump that much, but I'm a very energetic performer. I caught myself jumping a couple of times during rehearsal yesterday. Me and my one-inch vertical leap. But the risk of a spinal compression is too great for me. I have to keep my limitations in the forefront of my mind all the time. One wrong jump could paralyze me.

It's winter, and we had a snowstorm here in Denver last Sunday. Guess what I wasn't allowed to do? Shovel snow. Not that I mind getting out of that duty, but there is no one else to do it. That's one reason why we chose a house that faces south. We have more than 300 days of sun here, and the sun melts the snow very quickly, even when it's still cold outside. So a few inches of snow didn't require me to shovel this time. But if we get a blizzard and have to get out, I'm not sure what we'll do. That's the trouble with being such a weakling.

Shoveling isn't even the main danger when there's snow on the ground. Falling is. One slip and fall could be disastrous for me. I could literally break my hip, which is filled with cancer.

Here's something else that doesn't add to my self-image. I am now the proud owner of one of these:

I used to scoff at the geezers who took so many pills they had to keep them organized by the day of the week. Now, I not only have to organize them by the day, but the time of day. Thankfully, I don't have an evening pill to take yet, but my nausea pills need to be taken three times a day. I try to remember to take them in the morning, mid-afternoon and before bed, so as to space them out as much as possible. I'm not supposed to take them too close together. I also have a sleeping pill to take before bed. So now, I spend my Sunday mornings before church filling my pill dispenser for the following week. I hope I don't have to add too many more pills to my regimen, or my pill dispenser might weigh more than twenty pounds.

But while I'm weaker than I've ever been, physically, I'm stronger than I've ever been, spiritually. I've never been more sure of my relationship with God, or of his goodness, his power, or his love for me. But it's not my strength. I'm just using his. Even in the spiritual realm, I am a weakling. Like a boy who might boast that his dad can beat up another kid's dad, I boast that my heavenly father can beat up any problem, illness, or obstacle. I can't, but he can. My weakness only serves to show his power.

God even shovels my driveway. He does it with the sun he created. The God who created the thermonuclear reactions in the interior of the sun has no limit to his power. All we have to do is recognize our need for him, and our weakness in the face of life's challenges.

I am a weakling, and my body keeps getting weaker. I had hoped that, after hormone treatment wore off, I might get some of my strength back. But as hormone treatment fades, the process of dying takes over. And as my body grows weaker, my connection with the ultimate source of power grows stronger. I am weak, but he is strong. It took a terminal illness to teach me that. I hope you learn it easier than I did.

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. (2 Corinthians 12:9)

Pressing On

I'm starting to think I'm pushing myself too hard. I often brag that I'm the busiest hospice patient in the history of the world, but I may have paid a price for that last weekend.

Last Saturday, January 13th, was a huge day for me. I had rehearsal during the day with The Littleton Conservatory Of Rock for our winter show on February 3rd. They're making this show a benefit for me, and for cancer awareness. It's a huge honor, and it's very important for me. It's my next goal date. Then, after rehearsal, I had an event that was my previous goal date; The Wik show.

As you know if you've been following along, Wik is a band of young musicians I'm mentoring. It's not like the Conservatory where there are lots of kids involved, and no set bands. Wik is a real, independent band, separate from The Littleton Conservatory Of Rock. My protege, Payton Roybal, is the lead singer of Wik. The show at the Toad Tavern in the Denver area was their official debut as a band. I wrote a review of that performance in Wik At The Toad Tavern, A Stellar Debut.

Here's what I didn't include in that review, and haven't told many people. I was terribly nauseous for the entire evening of the show. In order to have the energy I needed for such an exhausting, thrilling day, I had taken a double dose of my steroid. I felt I needed the extra energy. I had also had a Reiki treatment that morning, which always helps. I took my nausea pill in the morning, along with my other pills, as usual. I take that pill three times a day, but when I got home from rehearsal, in a rush to eat something, change clothes, and get to the venue early enough to save tables, I forgot my afternoon pill.

I've forgotten my midday pill before, and been fine. But this time, I was hit with a wave of nausea almost as soon as we arrived at the venue. I had no pills with me, and couldn't take an hour to go home and take one. So I had no choice but to ride it out. Adrenaline and love got me through it again, and in spite of my nausea, it was a night I wouldn't trade for anything.

I expended a lot of energy at the show. Not just performing, which I barely did, but greeting people who came to the show. There was a big crowd, and quite a few were there to see me. It's wonderful being someone lots of people want to see and talk to, but as one who has worked events where I had to be "on" all the time, it was draining when I was healthy. It's much more draining now. But I'm not complaining. In spite of my nausea and fatigue, I couldn't get enough of the people I love, and I didn't want to leave.

But eventually, I had to get home and to bed. I took a pill as soon as I got home. It didn't help. I took all three of my pills on Sunday and Monday, and the nausea never left. On Tuesday, I met my nurse and told her the problem. She consulted the doctor, and they decided to double my dose. Once I started taking twice the amount I was before, my nausea went back under control. So now, after four straight days of nausea, I'm taking ten milligrams instead of five, three times a day.

This might seem like a minor adjustment, but it feels like a milestone to me. It's a reminder that this particular cocktail of drugs they have me on won't be effective forever. And I can't help but wonder if I've accelerated that process by pushing myself so hard.

I'll ask my nurse about that on Tuesday, but I can tell you one thing. If she says it's likely I'm costing myself time by pushing myself, it won't make a difference in what I do. I love what I'm doing too much.

After the Conservatory show on February 3rd, my mentoring schedule will be limited to one rehearsal a week, and I won't be performing at all. I'll just be sitting there at rehearsals throwing my two cents in and loving on some of my favorite people. Doing some legacy work. The energy expended will be minimal. Just spending time with friends, not unlike what I do with other friends.

But one day soon, even that will be too much for me. When I have to start staying home most of the time, that's when the real decline will begin. As I keep saying, if I don't keep doing what I love, I might as well just lay down and die. So I keep going, regardless of the cost. Get busy living, or get busy dying, as Morgan Freeman once said in The Shawshank Redemption. I have to keep living for as long as I can. I can't just wait to die. Even if my next goal date on February 3rd, or the goal date weekend after that, March 16th and 17th, sends me into a tailspin I never recover from, it's worth it to me. I have to press on. #waroncancer #bearingwitness

Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus. (Philippians 3:13-14)

The Next Symptom/A Sign From God/Reiki Don't Lose That Number

 

The Next Symptom

This post is in three parts. In the first part, I have some updates about my condition. In the second, I believe I received assurance that I'm doing the right thing, and should not alter course. In the third, I'll talk about my new favorite treatment.

The cocktail of medications I am on is still keeping me going. I'm in no pain, have the energy I need to do the things that are important to me, I'm able to sleep, and my nausea is under control. I know it's a Band-Aid. This won't last forever. I tell people we're holding it all together with duct tape and Elmer's Glue. It's working for now, but the first time it rains, it'll all melt. But I'm grateful for the time these medications are giving me. If not for them, I wouldn't be doing much.

I received no compensation for the two instances of product placement in the above paragraph.

My greatest risk, in terms of a catastrophic event that would compromise my quality of life is a spinal compression. Cancer has weakened the bones of my spine. That's where most of my cancer is. Many guys with my condition suffer from spinal compressions that paralyze them from that point down. This happened to a friend of mine. He spent the rest of his life in a facility where he could be cared for properly.

This is my greatest fear. Not dying from this cancer, but being paralyzed by it. Having to live the rest of my life in a hospice facility, instead of at home. So I asked my nurse this week if lifting heavy objects would increase my risk of a spinal compression. She said yes. She said I shouldn't lift any more than twenty pounds. Twenty pounds! I bought a case of bottled water this week that weighed more than that. That's emasculating. No more lifting speakers for me. No more jumping, either. Not that I've done much jumping lately.

But that wasn't the worst news she gave me. Recently, my wife has begun complaining about my breath. Once recently she asked if I'd forgotten to brush my teeth when I had just done so. When I saw my nurse this week, I asked her about it. I thought maybe it was the combination of meds I'm on. Or maybe my body chemistry is changing.

She asked if my diet had changed, or my oral hygiene. I said no. If it isn't bacteria in my mouth, which is the usual cause of bad breath, the most likely conclusion is that my cancer is making "fumes," as she put it, and they're coming out of my mouth when I exhale. I'm breathing out cancer fumes. I literally have death breath. This is my latest symptom.

I looked it up on the Google machine, and there are new studies that show a breath test can detect certain types of cancer. So cancer breath is a real thing, apparently.

It's almost funny. That thing I was so insecure about in middle school, bad breath, is now actually a problem. Of course, in middle school, I was self-conscious about my breath on the off chance I'd get close enough to a girl for her to smell my breath. Which rarely happened at that age. But now, in my sixties, I coach teenage singers and often have to talk to them in close quarters with a loud band playing. Now I'm self-conscious about exhaling my death breath on teenage girls! It's the ultimate Junior High nightmare! This should do wonders for my shrinking circle.

I'm trying to keep it under control with flossing, mouthwash, and breath mints. I know about parsley and other natural remedies. But if this is a medical condition, it will need to be addressed medically. Many people suffer from chronic halitosis because of a health issue. I know there are medicines for that, and my nurse is looking into them for me. I'll keep you updated on this and everything else, as always.

A Sign From God

As longtime readers know, I refused chemotherapy. Chemo would not have cured me, or even given me significant time. I felt good about deciding against it in favor of pursuing my callings and passions for as long as I can. But there is what seems to be an impossible goal date ahead of me that I would very much like to accomplish; The Littleton Conservatory Of Rock summer show this year. Rehearsals would begin in June, and the show would be in August.

The winter show is in three weeks. I'm looking forward to it with great anticipation. I told the kids at our first rehearsal that this would have to be my last show, because of my declining health. I don't see any way I'll be able to do the summer show if we do nothing to treat my cancer. I honestly don't see myself making it to my 63rd birthday on May 7th under the present circumstances.

This being the case, I've been considering doing a round of chemo this February, right after the winter show, in order to try to be around for the summer show. It goes against what I believe in, but I was seriously considering it. I just wanted a few more months to follow through on some things.

There are private reasons I can't share here that would prevent me from doing this. A major change would have to take place for me to try to get more time. But had that change occurred, I was on the verge of going off hospice care in three weeks and going back into treatment.

And then, I found out that the one person on earth that I would trust to give me chemo no longer works where I would go to get it. There's no one else I'd let do that to me. Longtime readers know who I'm talking about.

As heartbroken as I am about this for my friend, I have to say that for me, it was a sign. God was saying, "Really? Let me take away your one trusted person, and see if you still wanna reverse the course I've set for you." I got the message. No chemo. Full speed ahead.

Also, because of this, I've made the decision to stop going back to my oncology team for my monthly consultations. I'll still go back and visit, but I will no longer be a patient there. I'm in my fourth month of hospice care. It's time I started seeing my actual hospice doctor.

If God wants me around for the summer show, he'll have to make it happen himself.

Reiki, Don't Lose That Number

In my first week of hospice care, my social worker recommended a treatment called Reiki. She said it's used effectively for many dying people. She didn't really explain what it is, and now I know why. It's difficult to explain. It's sort of like a New Agey massage, only it's not a massage at all. It's just light touching on top of clothes, done in a specific way.

As both a Christian and a science guy, I've always been skeptical, if not hostile, towards anything New Age or based on Eastern philosophy. But at this point in my life, I'm more open than I used to be. After the intense experience with God I had more than two years ago, the hard edges around my Christian faith have softened. I now believe all things serve The One, whether they are intended to do so or not. All good things come from him. And I have found that Reiki is a very good thing, at least for me.

I decided to try it. With my heightened spiritual sensitivity, I would know immediately if this felt wrong. I am secure in my relationship with God. I've lived my life by following my heart, and I knew my heart would speak truth to me about this, one way or the other.

A volunteer named Terri arrived at my door for our first appointment last November. I liked her immediately, and both our dog and cat took to her like she had raised them. Good vibes.

As we had our introductory conversation, I found out Terri is also a Christian and a science person. She's an engineer with security clearance. She told me that many patients who were insensible and even hostile, not knowing she was there or what she was doing, would calm down when she treated them. Its supposed to be great for pain, which does not apply to me yet, thank God. It's also supposed to be good for stress. I do have a lot of stress. Dying is hard work. The stress of cancer has aged me.

In our first session, Terri had me lie down on my bed, and get some mood music playing. While I started the music, she proceeded to "get the room ready." This consists of a series of hand motions. I know, it seems a little hocus pocus to me too. The session takes about an hour. She touches me lightly for a few minutes in each area of my body, starting at the head, and going down to my feet.

The first time we did this, I felt nothing. It was nice lying down for an hour listening to soft music, and I liked Terri, but I didn't feel like Reiki had done anything for me. Terri asked if I wanted to try it again. I said sure, I'd be willing to give it another try. Maybe it was an off day for me. We set an appointment for about a month later, in mid-December.

When Terri came in December, she asked me to lay across the foot of the bed, so she could get behind my head. The first time, I lay with my head on the pillow at the head of the bed, like usual. So my head was against the headboard, and she couldn't reach properly. This time, Terri started facing the top of my head.

She placed her hands on top of my head for a few minutes, then the side. Or maybe it was the other way around. Her hands got very warm. I could feel this warm, energizing sensation. I don't really believe in chakras and New Age energies, but I felt something. I prefer to think of it as a physiological response. But whatever it was, it was powerful. Impossible to describe, but powerful.

Then she moved her hands under my head, and the sensation was overpowering. Tears began streaming down the sides of my face. Terri became emotional as well. It's now expected that, when that part comes, and her hands are under my head, we may both be crying. We keep tissues close at hand. Terri continued down to my neck and chest, and down my legs to my feet. She always asks if there are any areas of discomfort so she can spend more time on those areas.

Each time we do this, my dog, my cat, or both, are on the bed with me. They can't get enough of it. They huddle up against me to get some of that feeling, energy, or whatever it is. Once, when we were finished, Terri had excess Reiki to give, and dog, cat, and woman shared the last of it in one huddled group hug. It was a sight to behold.

After that second session, I felt energized for the rest of the day. I was sold. I couldn't wait for our next session. In an hour-long Reiki session, there's lots of time to talk. I told her about my work with The Littleton Conservatory Of Rock. Our rehearsals are four to five hours long for me, every Saturday. So Terri volunteered to come on Saturday mornings before I have to be at rehearsal, to help give me energy for the day. Emphasis on the word volunteer. Terri does all of this on a volunteer basis for dying patients. She, like all hospice volunteers, is an angel.

When Terri was here last Saturday before rehearsal, I told her I was having increased nausea and a muscle strain or knot in my back, which was very painful. She spent extra time on those areas, and when we were finished, the pain in my back was gone and I was hungry.

Terri has become a friend. She is actually moving into our neighborhood soon, walking distance from our house. This makes me very happy, and makes our pets even happier.

I suspect that many of my readers will struggle with this, the way many did regarding my medical marijuana use. All I can tell you is that I sense no spiritual aversion to Reiki at all. It's true that I don't buy into what those who practice Reiki believe about it, but all good things come from one place. I don't believe in taking lots of prescription drugs either, but here I am doing what I must. For me, the bottom line is, Reiki helps me live better. It helps me get through taxing days so I can do the things I love to do.

I wouldn't recommend Reiki to anyone who would be uncomfortable with it for any reason. But if you're open to this, I believe it would be beneficial to you.

And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love. (Romans 8:38)

Neither cancer breath nor the loss of my nurse, nor a treatment that may seem "out there" to some can separate me from the One who showed himself to me and changed me more than two years ago. My heart is for him, and like all things seen and unseen, I serve him. #waroncancer #bearingwitness

The Shrinking Of The Circle

On the turning away
From the pale and downtrodden
And the words they say
Which we won't understand
Don't accept that what's happening
Is just a case of others' suffering
Or you'll find that you're joining in
The turning away
                –Pink Floyd

When you have a terminal illness, or any difficulty that makes others uncomfortable, you experience something that makes the whole experience worse than it should be. I’m talking about abandonment. Not a nice subject, but one I’ve wanted to write about for some time. I just couldn’t figure out a way to write it that didn’t sound like scolding or complaint. After the experiences I’ve had this week, I think I know how to approach this subject. It’s an important one, because everyone in my category experiences this. It needs to be addressed.

This post is a companion to Sitting In The Mud, which has reached more people than anything I’ve written so far, because it applies to all of us. But unlike that post, this one explores what happens on both sides when we won’t sit in that mud, for whatever reason.

Since I went public with my cancer more than two years ago, people I thought were friends have disappeared. One couple with whom we had had a long, close relationship suddenly dropped off the face of the earth when they found out I had cancer. My wife has also experienced this because of me. One of her best friends for decades stopped returning her calls when it was learned I had terminal cancer.

Everyone who has had cancer or any other life-threatening illness or disability knows what I’m talking about. It happens to all of us. I said early in my journey that when you have cancer, you find out who your friends are. And who they aren’t. Despite what many people think, friendship is not a feeling. It’s an action. Your friendship with anyone is not measured by how you feel about them, but by how you treat them.

While a few abandoned us early when they learned how serious my illness was, many more stepped up. My circle of friends did not shrink for my first two years with cancer. It exploded. I received support from around the world, and made many new friends. I gained whole new groups of supporters, from those in the Prostate Cancer Support Group on Facebook to the Neal Morse community. I gained chosen family and several good friends from my association with the Littleton Conservatory Of Rock. I have felt loved beyond anything I’ve experienced in my life. But since I began hospice care, many have fallen by the wayside. It seems they just can’t hang with me and my impending demise. They can’t go there, so they stay away, or shut me out in some way.

I suspect that many of them feel I’ve given up. Maybe they could only follow and support me when it seemed I was “fighting.” I think this is true of many in the prostate cancer community. They don’t want to think about what might be coming for them, so they choose to keep scrolling when they see a post of mine, when they used to stop and read.

There are also those who think they love me too much to watch me die. And I force them to watch. But if they won’t stay with me in my darkest hour, do they really love me?

Some don’t disappear completely. They simply cool towards me. A once close friendship becomes a casual one. A relationship that used to call for extended periods of time together is now reduced to a dinner here and there. It’s not complete abandonment like the ones I mentioned earlier, but it is a loss of intimacy. And I crave intimacy now. I need it.

I’ve heard from the beginning of this process that as we get closer to death, our circle does not expand. It shrinks. For two years, I experienced the opposite, so I found this hard to believe. I thought my following and personal relationships would continue to grow, as it had from the beginning. But that is not what has happened.  And it’s not just others keeping me at arms length or worse. I’m doing the same thing to some others. I’m shrinking my own circle. I have to.

Here’s the truth. I no longer have time for casual friendships. I only have time for my inner circle now. There are many people who want face time with me, and I don’t have enough time to fit everyone in. So it’s not always about feeling as though someone did not prioritize their dying friend like I thought they should. It’s also about time. Time is the most precious thing I have. I have to make hard choices about who and what I’ll spend my time on.

Each time I meet someone for coffee or lunch, it’s time away from Sharon. Every activity I’m involved in costs her time with me. There’s a limit to how many meetings and lunches I can do. But if you are important to me, and if you have been there for me, whether near or far, I will make time for you. There are some I need to see or talk with often and repeatedly. For others, one meeting is enough. And some don’t make the cut. It has to be that way. I don’t get more than 24 hours per day just because I’m dying. 

I have a specific set of criteria to discern the difference between those who have stepped up and those who have backed away. I use these criteria to decide who I’ll make time for. Sometimes it’s based on the level of our friendship to begin with. If we’re casual friends, it’s unlikely I’ll be able to find time for a one-on-one meeting. If we’re close friends, it boils down to this. If I feel you’ve been there for me when I needed you, you remain in my inner circle. If I feel you’ve let me down in some major way, I may not return your messages or calls. I can’t take the disappointment of being let down, so I have to protect myself. But there are exceptions made on a case-by-case basis, as we will see.

My emotions are fragile. Most of the time, I’m upbeat, as you know if you read my posts. But it doesn’t take much to send my emotional state into a tailspin. Just a little heartbreak. And no one can break my heart easier than those I love the most.

This issue came to a head in an interesting way this week. Three different situations and levels of friendship, each with a different outcome. It helped clarify my feelings about this, and made it possible for me to finally write this post. One was what I’d call a casual friend, one a close friend, and the other a couple who are chosen family to me. Two of these exchanges or encounters resolved well, in my mind, according to the criteria I just described. The other did not. In one scenario, I was the one who excluded someone. In another, a friendship was partially restored. And in the other, I was disappointed, and felt I was being told it would be difficult to find time for me. Within that small sample, it felt to me as though my circle shrank by half in one week. But despite my disappointment, I will make time for the ones who disappointed me no matter what.

This past week showed me that I am as responsible for this winnowing effect as others are. So while pointing fingers at others, I’m pointing four more back at myself. It gave me a handle on what was happening on both sides.

But while I talk about those who are excluded from my inner circle, whether by their choice or mine, there are others who stick by me no matter how bad it gets. There is a small group of friends who regularly check on me, just to see how I’m feeling that day. It helps more than you can imagine, unless you’ve been there. Some live near me, others live far away. Close friendships have developed this way. If this describes you, you are in my inner circle even if you live in another state, or another country. The ironic thing is, these people seem to be the most sensitive about how precious my remaining time is. They sometimes feel like they’re bothering me. Trust me, you’re not. You are a great help, and I will make whatever time I can for you. You encourage me and support me. Don’t ever feel like you’re bothering me. I will continue to make time for you until my time runs out.

At this point in my life, with very little time left, my circle is shrinking. Some are abandoning me by choice. Some want to see me, but I can’t or won’t make time for them. And a few get unlimited grace because of the depth of my love for them. None of it is fair to any of us. What’s happening to me isn’t fair. But as time runs out for me, I must prioritize. If I’m not a priority for you, chances are you won’t be one for me.

I hear it said that everyone processes something like this differently, and I shouldn’t judge if someone feels that they can’t stay close to me because of how it makes them feel or because they’re too busy. Well, I do judge. If the way you process my dying is to back away, the way you process it is wrong. You have an obligation to your dying friend. If someone you say you love is dying, and you can’t make time for them, or stay in touch in other ways, are you acting like a friend? Friendship is as friendship does. But using this same criteria, you may judge me. I plead guilty, and so should you.

What they say is true. As you approach death, your circle shrinks. I am only one example. There are millions like me. Their circle is shrinking too. If you say you love them, but don’t show up for them because it makes you uncomfortable or you have other priorities, the love you feel isn’t real. Love isn’t love until you give it away. Don’t turn away from your friend in need. Instead, be the friend that they need. Not just for them, but for yourself. Remember, they aren’t the only ones running out of time. You’re running out of time with them too. When your loved one passes from this life, they will no longer be suffering. But you will suffer the guilt and regret that you didn’t make time for them while you could. If you really love them, that is.

Your friend needs you, and you need them, whether you know it right now or not. Don’t just feel friendship for them, be a friend to them. Or you’ll find that you’re joining in the turning away. #waroncancer #bearingwitness

Then they will reply, “Lord, when did we ever see you hungry or thirsty or a stranger or naked or sick or in prison, and not help you?” And he will answer, “I tell you the truth, when you refused to help the least of these my brothers and sisters, you were refusing to help me.” (Matthew 25:44-55)

Gaunt Cancer Guy Vs Puffy Steroid Man

Longtime readers of this blog are well acquainted with my recurring character, Gaunt Cancer Guy. I refer to him often. Mostly, I say I don't want to be him. Longtime readers also know that I struggled with weight loss during treatment. I had to see a nutritionist to correct the problem twice.

I've always been naturally thin. It's always been much easier for me to lose weight than to gain it. I have a high metabolism. So my struggle, until recently, has been to stay at my optimum weight, and not let it drop too much. But since I began hospice care, I've started to have the opposite problem, because of this steroid they've got me on for energy. Dexamethason, or Dex for short. It's making me gain weight. As of today, I'm seven pounds over where I like to be. I'm all puffy. Gaunt Cancer Guy has given way to Puffy Steroid Man. Reminds me of a King Crimson song.

I like to wear thermal shirts this time of year, but most of my thermals are too tight now. They show my muffin top. So I'm wearing sweatshirts instead. I hate it.

I can hear you snickering. "We should all be so puffy!" one of my friends said recently. But I like to be thin enough to fit into this suit.

Not that I'll ever wear it again. But I want to be able to fit into it. Every woman out there knows what I'm talking about. This is what two years of hormone treatment has done to me. Made me start worrying about fitting into clothes I'll never wear. Right now, I couldn't fasten those red pants.

I've never been an athlete. Never really bulked up. In fact, for most of my life, I've been this guy.

I thought if I ever took steroids, it would turn me into this guy.

Instead, steroids are turning me into this guy.

Rapid, unintentional weight loss was the first symptom I was expecting. Instead, I got nausea and fatigue. To give me energy to do the things I love, I take this steroid. Which makes me puffy, and apparently aggravates my nausea. But there is good news with regard to the nausea. We seem to have it under control. We added a drug called Omeprazole to it, which is often added to Dex to ease stomach upset from it. Once I started taking Omeprazole, my stomach settled down a bit.

But that wasn't enough. So we also added a new nausea medication called Metoclopram. These drugs have such catchy names. I take it two to three times a day. It keeps my nausea under control, unlike Ondansetron before it, and doesn't constipate me, which anti-nausea meds often do.

Apparently my nausea is acid-based. That's why I've had trouble drinking coffee. It's not the caffeine, it's the acid.  I had become convinced that my nausea was a symptom of bone metastasis. I'd heard that from other men with bone mets, that they also experience nausea. I know the nausea started before I started taking the steroid, but it's possible Dex is making it worse. That's probably why Omeprazole helps some.

But there is good news on the coffee front. I decided to try it again a few days before Christmas. I really wanted to have a cup of coffee on Christmas morning. It's part of our tradition. So I wanted to see if the new meds would allow me to do that. I tried it ahead of time so I wouldn't risk ruining Christmas by taking one sip of coffee. I'm happy to report that I drank about a cup and a half before it started to bother me. It showed me that I'm done being a daily coffee drinker, but it's nice to know I can have a cup once in a while if I really want one. So I had some coffee again Christmas morning. That was a good Christmas present.

We had our Care Conference with my hospice team recently. My wife, my nurse, my social worker, and two chaplains were there. We FaceTimed with the doctor. Many things were discussed, and one medication was added for me; Meclazine, for my occasional dizzy spells. I'll only take that in case I have another one of those. I sincerely hope I never do.

I can't believe I'm talking like this. I've always been very anti-pharmaceutical. I've always preferred natural remedies, and been suspicious of the for-profit heath care system in the U.S. I've always tended to judge people who seem to have a pill they take for everything, and then more pills to counteract the side effects of the first pills. That has always seemed like a trap to me. But it's not like I have to worry about getting addicted to drugs at this point. There isn't time for that. So my attitude has changed in this circumstance. If I had a normal life expectancy, There's no way I'd take all of these pills. But having said all of that, I'm happy to say I don't struggle with nausea like I did before. It's a great relief.

I'm actually doing really well now for a guy in his fourth month of hospice care. My balance, energy and sleep have all been better recently too. But I tell everyone who thinks I seem fine that if it wasn't for the medications I'm on now, I'd be one hurting puppy. I'd be nauseous and tired all the time. I'd have frequent balance issues that are dangerous for me. If you need a reminder of how I felt a few weeks ago, read Sick And Tired. I have no illusions that this balancing act will last a long time. It's a temporary reprieve. I'll take whatever I can get. Better living through chemistry.

But back to the problem at hand. My puffiness. Maybe I'll just wear sweat pants for a while. Elastic waistbands are the new skinny jeans.

I know I shouldn't worry about gaining weight at this point. It will provide a little cushion - pun intended - for when my weight begins to crash. And crash it will. I suppose I should load up while I can. More ice cream, please. I guess I'll just keep getting puffier for the time being. But not for long. Puffy Steroid Man may be winning right now, but Gaunt Cancer Guy will make a comeback. #waroncancer #bearingwitness