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

The Best Things I Did This Year

This is not a year-end retrospective, like I wrote the past two times New Year's Eve came around, in 2015 and 2016. If you want a quick synopsis of my whole story, read those two posts. But this year, I'm taking stock. I want to talk about the things I did this year that I'm happiest about. The decisions I'm glad I made, and the things I'm most glad I did. Lord knows I'm not shy about bragging on myself, but that's not the intent of this post. When I talk about the best things I did this year, I'm not touting my achievements. I'm counting my blessings.

These are not in chronological order, or in order of importance. It's not a Top Ten List. They're all the best. It's yet another embarrassment of riches. I have led a charmed life, even as I approach death.

The best thing I did this year was finish a career well. While I wanted to stop recording for a living much sooner than I did, I was happy to be able to finish three album projects and complete the twentieth volume of a CD series I've been writing and producing since the 1990's. I ended my song parody service for radio as well. Since then, I've been able to focus on the things I'm passionate about now.

It's such a blessing to be able to finish well. In all ways, not just professionally. Many people never get that opportunity. I'm very grateful for it.

The best thing I did this year was get monthly Xgeva shots for my bones. I experienced no side effects from it at all, and I believe it's a big reason I'm still walking around right now, even with a spine full of cancer. It was a decision I agonized over publicly, but I'm glad I made that decision now.

And speaking of cancer treatment, which I ended this past September, the best thing I did this year was form relationships with my medical team. It's why I found it impossible to leave them, even in hospice care. I go back for my next appointment on January 9th, and I can't wait.

The best thing I did this year was help two friends find love. With each other. 'Nuff said.

The best thing I did this year was visit my family last February. At the time, it seemed to all of us that we'd get another chance. But toward the end of this year, my dad had a health problem that prevented him from having visitors, and by the time he recovered, I could not travel. So I am thankful that we got that visit in when we did.

The best thing Sharon and I did this year was celebrate our 40th wedding anniversary. We threw a huge party, and friends came from near and far. Three bands played, and I was in all of them. There was an undertone of sadness to this event due to my circumstances, but we felt loved. I am more blessed than anyone I know to have been married to this incredible woman for forty years.

And speaking of Sharon, the best thing we did this year was spend a lot of time together and do a lot of fun things. We took four fun trips together in 2017. Three flights and one road trip. We visited close friends, took our last tropical vacation together, and went to Morsefest. More on that later. But we also stayed home a lot. We hung out at our favorite spot by a nearby reservoir several times this past summer. We went to neighborhood summer concerts. We spent time on our patio. We ate out a lot. We went to church.

It seems like I'm always running off somewhere; to a rehearsal, a gig, an appointment, or to meet someone I want face time with. Each time I do that, it costs Sharon time with me. I am keenly aware of that. That's especially true during rehearsal season for a show with the kids. But more and more, I'm asking people I want to see, and those who want to see me to come to our home, so I don't have to leave her so much. That trend will continue.

The best thing we did this year was find Greenwood Community Church, about ten minutes from our home. We love it there. We love the pastors, the worship team, and the whole feel of the place. I wish we'd found it sooner. Now, it's too late to assimilate the way we normally would in a church. At my stage of life, we can't get involved like we used to. We just need a place close to home that feels right to us, and Greenwood does.

The best thing I did this year was finish my book, Bearing Witness. So far. It's up to date, and now I'm just adding as I go. I plan to keep adding right up to the end, or as close as I can get. I'm close to printing manuscripts and I've already asked a few people to proofread it. I may ask you soon.

The best thing I did this year was continue to mentor young musicians. From The Littleton Conservatory Of Rock to the band Wik to my protege, Payton Roybal. Payton is the lead singer of Wik, and we've just launched our Facebook page. Check it out and give us a like!

I can't describe the feeling I get from working with them. Being with them turns a horrible day into a great day. I've made made new friends and gained chosen family. It gives me a sense of purpose, and keeps me involved in music, my first love. I love every part of it, including listening to the set list for the next show in my car over and over for weeks on end. It gives me goal dates to shoot for. Because of this, I have two gigs in the next five weeks! It's one of the things that God and medication are keeping me upright for, and it means the world to me.

The best thing I did this year was give away many of my worldly possessions. Sharon and I continue our campaign to give away our things to the people we love, because people are much more important than things. Large items and small go out our door regularly to those who can use them. As I said in my last post, if we are close, dibs are accepted.

Notably, I gave my sound system and my keyboard to my protege, because singers in bands need those things, and I have no more use for them. But more than that, I gave her my support, and my confidence, and my time. Time is my most precious gift, but I'm not giving it as a favor. I'm giving it, and everything else I'm giving to her and everyone else I love because it's more blessed to give than to receive. And I want all the blessing I can get.

Finally, the best thing I did this year was join the Neal Morse Forum on Facebook. I actually joined that group one year ago today, New Year's Eve, 2016. Close enough. This is the best group of people I have found anywhere. They've been incredible supporters for Sharon and me. They decided we should be at Morsefest this year, and raised more than enough money to send us there in three hours. That led to VIP treatment at Morsefest beyond anything we had ever experienced. As a result, now I have personal relationships with most of the guys in the band. Now I have memories that will sustain me for the rest of my days. Now I have a whole new family. A #progfamily. That's the best part.

And the Neal Morse community is the gift that keeps on giving. We keep receiving gifts from Neal and his people. The picture above was taken at Morsefest by Neal's official photographer, Joel Barrios. That's one of about twenty pictures he took of me crying at that moment. I guess that was the best one! I don't even want to see the worst. Joel, as well as Scott Henry and Thad Kesten, Neal's videographers, have been very kind to me. They have given me things I'm pretty sure no one else has. In the world.

Scott and Thad are the ones who asked me to be interviewed for the Morsefest DVD. At the time, I expressed regret that I'd never see the interview because it takes so long for them to come out. But they made sure I did see it, and much more. Name another rock festival where that would happen.

Every week, someone from the Neal Morse community, whether someone from Neal's camp, or his fans, or Neal himself reaches out to me in some way. I can feel the love from these people, from all around the world. It's a precious thing. A year ago, I knew very few of them. Now they're family, and one I know will also be there for Sharon when the time comes.

After the Littleton Conservatory Of Rock show on February 3rd, my next goal date is March 17th. The night of Neal's solo acoustic show here in Denver. I can't wait to see him.

Some of you are probably thinking, "Hey Mark, what about God? You always end these things with some sort of God paragraph, so get to it." But that's not something I did. Not at all. I'll confess something to you. I do very little of what people would call praying. Instead, I have a running conversation with God, mostly not in words, every waking moment. I can feel his presence all the time in a powerful way. I don't have to do anything, or say anything, or go anywhere. It's not the best thing I did this year. I didn't do it at all. It's something he did for me more than two years ago, and he's still doing it. This is why the emotions are so close to the surface. Because he is so real, it's overwhelming.

I don't know how much of 2018 I'll be here for. My due date is approaching fast. I feel like it will come sometime this spring. But as I look back on 2017, I realize that many of you have been here with me for all of it, some for much longer. The support I receive from the readers of this blog helps to keep me going. If you make a list like this, I hope reading this blog is one of your bests. Because writing it is the best thing I did this year. #waroncancer #bearingwitness

One More Thing

In my family, we have a tradition at Christmastime called One More Thing. After all of the gifts have been opened, someone yells, "One more thing!" and brings out another gift. Many times, it's the biggest gift of all. I once gave my wife a puppy as a One More Thing.

Many times, there has been more than one One More Thing. After the first, someone else would take up the call. There might even be a third or fourth One More Thing. Not often, but it has happened. So in that spirit, this post has a few One More Things.

I wrote a post with this same title last year about this time. It began with the same two paragraphs as this one. But this year, there are new One More Things. And there are many more than one.

I will give you a full update soon in an upcoming post titled Gaunt Cancer Guy Vs Puffy Steroid Man, but the short version is that my nausea and energy issues are under control, thanks to some new medications. I sometimes still have trouble sleeping, and I'm just getting over a cold, but overall, I'm doing really well. Things are much improved since I wrote Sick And Tired. Thanks for your prayers, and for worrying about me.

One more thing. I've discovered a new passion; Giving away my worldly possessions to the people I love. It's a feeling I can't describe. I can't stop saying it. It really is more blessed to give than to receive.

One more thing. A year and three months after having seen the metastasis spots on my spine show up in that bone scan, I still have no pain from them. Now, with a spine full of cancer, plus more in my hip bone and tail bone, I still can't feel a thing. I'm starting to believe I may never have pain from my cancer. Some people don't. My maternal grandmother didn't when she died of cancer. Whether it's coming or not, I'm thankful for every day that's pain free.

One more thing. I am the recipient of far too much love. Every day, people randomly love on me in unexpected ways. It happened three times in one day this week. That's why I have to keep giving it away. If I don't, all of that love goes to waste. Because as Michael W. Smith once said, love isn't love until you give it away.

One more thing. This Christmas season has been especially meaningful to me. Going through old pictures, stirring up memories of Christmases past, and posting those pictures as another way of telling my story at this time has made this Christmas very special. It's encouraging to see the responses to those posts. The love keeps flowing.

One more thing. I gained some new chosen family members this year. You know who you are. Two groups in particular come to mind; Those who are part of my passion for mentoring young musicians, and the Neal Morse community. You inspire me. You keep me going. I love you.

One more thing. There are a very special few who take it upon themselves to check in on me regularly, just to see how I'm feeling that day. I can't tell you how much that helps. Thank you.

One more thing. God is good. I keep talking about the experience I've had with God, but I never seem to get any closer to describing it. It's like being bathed in the warmth of the sun, but that warmth is Love, and it penetrates every sub-atomic particle of your being and the space between them. Or maybe it feels like the biggest, warmest hug you can imagine, and it goes all the way through you. How's that for a description? When you feel like that all the time, tears are usually close to the surface. Especially at this time of year.

One more thing. Thank you for reading this blog. It means the world to me. I hope it's an encouragement to you. If you're a cancer brother or sister, I hope you can relate to my journey. I hope I speak for you in some small way. If you're reading because you know me and are concerned about me, I hope it helps to give you this window into what it's like, and helps you know how to pray for me. If you are in hospice care like I am, or have a loved one who is, I hope my account brings you comfort, or informs you in some way. If you are searching for God, I hope I can point you to him. I'm gonna keep on bearing witness for as long as I can. This is my calling.

One more thing. Merry Christmas! #waroncancer #bearingwitness

My Last Christmas

My last Christmas will be like most others have been, yet unlike any before it. And certainly unlike any after it. We're going ahead with all of our traditions, and spending Christmas Day at home, as usual. But as much as we try to celebrate like we always have, there's a bit of melancholy around this one. When someone in the house is dying, jolly can be hard to come by. But love and joy abound.

The above pictures are of some of our decorations. Yes, that's a genuine aluminum tree from the 1960's. I bought it on Ebay about fifteen years ago, complete with color wheel. My favorite piece is the candy cane mailbox. When I posted these pictures on Facebook last week, someone asked if I will be able to go home for Christmas this year. I replied that this is home. We are home for Christmas.

When my parents moved from our hometown of Plymouth, Michigan to Illinois decades ago, visiting my family ceased to be "going home." When many of my friends go to visit their families, they are also visiting the place where they grew up. That hasn't been true for me since the 1980's. For Sharon and me, Denver, Colorado is home. This house where we've lived since 1999 is home.

Most of our friends have their own families and traditions, or live out of town, or have to work on Christmas, or some combination thereof. And the list of people that we would want to spend Christmas with, to be honest, is very short. For many years, Sharon and I have spent Christmas Day here at home, just the two of us. We have a specific set of traditions for Christmas Day, and we will follow them one more time.

One more time, we'll listen to Handel's Messiah all the way through while we get ready and open our gifts. One more time, we'll tag our gifts to each other using names of characters in movies, TV and books. To Clark from Lois, and so on. One more time, we'll light a fire in the fireplace in the room where the tree is (we have fireplaces in two rooms) and throw our wrapping paper into the fire, watching the pretty multi-colored flames. One more time, we'll have a frittata with mimosas for brunch, and fondue for dinner. One more time.

Buying gifts is an issue when you're in my shoes. At our stage of life, we're not accumulating things anymore. On the contrary, we're giving everything away. When friends come to our home, we beg them to take our CD's, DVD's, and books. We give away boxes and bags of clothes and other household items to charity every month. My wife has given away whole sets of china and glassware, and is planning to give away more. If we are close, dibs are accepted. I've sold most of my musical equipment, and given the rest to my protege. So it's really pointless for us to get gifts for each other. But we're doing it anyway, because it would spoil Christmas morning not to. It's my last Christmas, so I want it to be Christmas.

I wish I could describe the joy I get from giving my worldly possessions to those I love. People feel weird taking our stuff. They feel like vultures or something. Please don't feel that way. I recently gave a couple of CD's to a friend because he said he was a fan of the band. That was a couple of weeks ago at least, and he continues to tell me how much he's enjoying them. I can't tell you how that makes me feel. It's worth a lot more than those CD's I wasn't even listening to anymore, I can tell you that.

They say it's the season of giving. That's certainly true at our house this year, but I'll repeat something I said in an earlier post. When Jesus said it's more blessed to give than to receive, he wasn't making up some new law. He was stating a simple fact. The giver gets the greater blessing than the receiver. I can testify that it's true.

Our decorations are more minimal this year than in past years. It's hard to work up the enthusiasm to go all out, considering everything that's happening. Our dear friend Sandi got up on our rickety ladder to put up our icicle lights this year because my balance is no longer good enough to climb up a tall ladder. That's a true friend. Those of you who were reading this blog last year at this time may remember how conflicted I was about buying an LED spiral tree for our front yard. I didn't know if it would be worth it, not knowing how many Christmases I'd get to enjoy it. That number turned out to be two. Last year and this year. But I think Sharon will keep that.

But I don't mean to imply that this Christmas is not being treasured and enjoyed. Last year, I had a lot of trouble getting into the Christmas spirit. But not this year. This year, I've been reflecting on Christmas throughout my life. All month, I've been posting Christmas pictures and memories on social media. I found out this week that my baby dedication was on Christmas Day, 1955. I posted a scan of the certificate.

Christmas has been a very special season for me all my life, starting with my first Christmas. I'm one of those people who is totally into Christmas from the day after Thanksgiving until New Year's Day, but don't want to see it or hear about it any other time. That's more true this year than ever before. I'm wringing every bit of enjoyment I can out of my last Christmas, because as of January, I have other things to focus on.

I'm enjoying listening to our vast collection of Christmas music more than I have in the past. I know I'm listening to most of these songs for the last time. I'll enjoy listening to them for two more weeks, then put them away. I love Christmas, and I'm enjoying this one as much as I can, but I don't have time to dwell on it after it's over.

I wish I could communicate the joy as well as I do the melancholy. Because the joy is ever present. I wish I could describe how concentrated the appreciation of time is. As I said in an early post more than two years ago, when you can see that it's finite, life becomes much more precious. Because of that, I'm glad to know that this is my last Christmas. I wouldn't be so focused on remembering past Christmases and telling about them if I didn't know that. I wouldn't be so determined to spend time with those I love the most. If I'm making an effort to spend time with you, it's the highest compliment I can give. Time is the most precious thing I have. Because this is my last Christmas. #waroncancer #bearingwitness

Why I Have A DNR

I posted something on social media which raised some eyebrows this week. I seem to have a habit of doing that. This time, it was a seven second video of me showing my new Do Not Resuscitate bracelet. In case you haven't seen it, here it is.

My tag line on both Facebook and Instagram was, "Here's something you don't order from Amazon every day." It had just arrived from Amazon. $6.99 with free shipping. It's made of silicone, and is bright red (or maybe orange) so as to be noticeable. There's no point in wearing something like this if it isn't seen.

The reaction to the post was interesting. Many were sad, or just didn't like it. But some were understanding and supportive. Between Facebook and Instagram, that little video starring my bony wrist has been viewed over a thousand times. Given the reaction, I thought I should explain why these are my wishes.

This is very personal information that most people don't air in public. But I must be a faithful witness. I've committed to being as open and transparent about all of this as I can be. I have no problem with the world knowing what my final wishes are. In fact, the more people know, the better, especially where CPR is concerned. That's what I really want to avoid.

This subject came up because of a couple of conversations I had with my hospice nurse, Carolyn. I told her about the "sit down quick" moments I've had at rehearsals, and she asked if I have a contact there. Someone who could call hospice, or maybe 911 for me if I fell and was unresponsive. I didn't, so I talked to a friend about that. As part of that conversation, I mentioned that I have a Do Not Resuscitate order in place. My friend was not sure he could tell an EMT not to revive me, so I asked my nurse about it again at our next appointment this past week. I learned some disturbing facts about CPR from her.

EMTs are trained to look for a DNR (short for Do Not Resuscitate), but many people have taken CPR training who are not medical professionals. Those people are not trained to look for a DNR. If I collapsed on the sidewalk, any stranger could come up and start CPR on me if I'm not breathing and don't have a pulse. If I'm carrying a wallet card with all of my medical information, even including a legal DNR, signed by a doctor, no stranger is required by law to look for that on my person. So many people choose to wear a bracelet or pendant, or even get a tattoo. I chose a bracelet. I just hope it's noticeable enough if I ever need it.

As I mentioned earlier, CPR is only for if you're not breathing and your heart has stopped. In order to do it properly, they have to crush your ribs in order to massage your heart. It's excruciatingly painful, and has a poor record of reviving people, especially terminal cancer patients. A recent study showed that 88% of over 1,000 doctors surveyed have a Do Not Resuscitate as their advance directive.

Let me state this plainly. In case this has escaped anyone's attention, I am terminally ill. I will die from this disease sometime in the next few months. I'm not likely to make it to my 63rd birthday on May 7th. My driver's license expires that day, but my driver's license still has a better expiration date than I do. Witness how fast symptoms have advanced when they weren't supposed to start until Christmas. That being the case, if I am not breathing and have no pulse, I do not want to be revived. If I die, let me die. Don't crush my ribs in a vain effort to bring me back. I don't have that much longer to be here anyway. Let me go home.

I have this, and other wishes for "scope of treatment" laid out in the form pictured at the top of this post. It's been signed by a doctor and laminated, and it's affixed to the side of our refrigerator, where EMTs are trained to look for it. Feel free to click on the picture and read my other choices regarding treatment. I hope and expect that, when the time comes, I will be at home and all of my wishes will be honored. My wife will be here to confirm my DNR. But just in case something happens elsewhere, I wanted something I could wear. Something easy to spot. So I ordered the bracelet, and showed that video of it on social media. And here we are.

I found two comments particularly understanding and affirming. One was by Randy Newman, who simply said, "As a physician, I agree wholeheartedly. I continue to pray for you." Randy also sent me a link to an article that lists the study I referred to earlier.

I also got this one from Cindy Manteris, who said, "Well, here’s the deal as seen from a nurse. When a cancer patient dies - heart stops, breathing stops - you can do CPR for a week and it won’t help. It’s over. So you might as well bypass all that stuff and go out with some grace."

That's why I have a DNR. I want to go out with some grace. No heroic, last-minute measures for me. Even if I were revived, what would you be saving me for? To die in a hospital instead of at home? A few more weeks of life, spent in agony from crushed ribs at the same time as I die from cancer? How cruel the irony would be if cancer never brought me pain, but I died in pain because some misguided person took it upon themselves to try to revive a stranger without checking to see if I have a DNR.

If you are CPR trained, God bless you. I hope you save many lives. Just please check to see if the person in distress has a DNR on them before you start. I understand that there are legalities at play here. From what I understand, the law favors those who administer CPR over those with a DNR. But I also know what's right. It's wrong to perform CPR on someone who is wearing something in plain sight saying not to do so. Let alone someone who went to the trouble and pain of getting a tattoo on their chest to make sure it didn't happen.

I know there are many who, while you are sad to hear me say these things, you know you feel the same way I do. If you don't want CPR to try to revive you if you die, make sure you get an advance directive in place. It's like a living will. You never know when you might need it.

I hope this explains that cryptic video. With my due date fast approaching, it's important to me to get the kind of death I hope for, and not to have my suffering prolonged needlessly. That's why I have a DNR. #waroncancer #bearingwitness

Sick And Tired

I saw my doctor today. He didn't have good news for me, but we're past the days of good news from the doctor. My symptoms are getting worse, and they won't be getting better. Ever.

But before I get too much into the subject of how much dying sucks, I should tell you how my weekend went. It was amazing. Saturday, I took an extra amount of the steroid we call Dex, and it got me through rehearsal that day and the party that night. Rehearsal was a blast, like always. My favorite part was singing some sick three-part harmony with my Dynamic Duo. I had no energy or balance issues.

The party was very meaningful. It was the last time we'll host that annual party. This group is like a family, and our house has been home to two annual events for this group for many years. The feeling of family in the group has been largely created here. I said a few words to our friends about how much the Colorado Art Rock Society has meant to Sharon and me for the past twelve years, and instructed anyone there who thought they might not see me for a few months not to leave without talking to me. I have to say my goodbyes.

One by one, friends came to talk to me. One was deep in denial, and it was painful getting her to face reality. At one point, she expressed disbelief that I was smiling while she was crying. I simply said, "I'm smiling because I'm loved." One wanted me to explain my experience with God in detail. That was a cool conversation. There were a few friendly, "If this is goodbye, it's been great knowing you" type conversations, but I knew I'd see most of the people there again soon, at one of our regular meetings. If my body will let me, that is.

I slept about four hours that night, then got ready for a Wik band meeting at our house at 9:00 AM Sunday. That's the band I'm in with teenagers. Seriously. We were all tired, but the meeting went well. A lot was decided, and as a result, we now have a gig on January 13th. All good. The whole weekend was good. Then this week hit.

Starting Monday, my nausea has been almost constant. I'd been able to control it with medical marijuana, but this week, I had to use the prescription Ondansetron. It doesn't help a lot more than the pipe I keep by my bedside, but it doesn't impair me. On the other hand, it causes constipation, so I can't rely on that every day. It's a juggling act, just like trying to find a dose level for the steroid to give me the energy I need and still allow me to sleep.

As happened with coffee, I wonder if something is aggravating my nausea the way coffee does. I think it could be the number of holiday sweets I've been consuming. I've been denying myself no treats this season. Why would I? No reason, unless eating those things made me miserable. So I have to try it. If I have to go through Christmas with no coffee or chocolate, this Christmas will be a lot less fun.

My energy level continues to drop. I hope the new regimen I'm trying of a quarter steroid pill four times per week will keep me active for a while, but it's a constant experiment where I'm the guinea pig. As my body continues to break down, I'll need more stimulant to keep going, which will compromise my ability to sleep.

I know I should go easier on myself. But I can't. The things I'm doing are too important to me. I don't care what it costs me in terms of recovery time. This past weekend took about three days to recover from. But I still didn't feel fully rested today, four days later, and I still felt sick. Sick and tired.

At the doctor's office today, I was thrilled to see my team again. I took the stairs, but slowly, holding onto the hand rail. For the first time, when they asked how I was feeling, I told them not great. When I checked in on Facebook, I listed my status as "feeling sick" for the first time ever. When I saw the doctor, I told him about my symptoms. The nausea, fatigue and balance issues. He said he never expected that nausea would be a symptom, much less my first and most prominent one. He wasn't surprised by the fatigue and balance problems, however.

He told me I should expect my symptoms to get worse, not better. My doctor is nothing if not an optimist. Every prediction he's given me so far has missed on the generous side. So for him to say that is significant. That's why I like him. He tells me the truth.

I told him I realize I'm pushing myself hard. I know it's only going to get more difficult from here. But I also told him about the show dates I have coming up on January 13th and 28th, and how I intend to perform at both of them. Not much, just a little. He's all for that. Goal dates are important for hospice patients.

I don't know if we're going to find a good solution to my nausea and fatigue, or if I just have to power through. Either way, I won't stop until I have to. I can't. The day I have to stop doing those things is the day I start dying in earnest.

This is the first week since I began hospice care that I've felt bad all week. I hope we can get a handle on this and I can start feeling better, but we may not, and I may not. For now, and maybe from now on, I'm sick and tired. #waroncancer #bearingwitness