Sunday, November 19, 2017

Homeward Bound


Home, where my thought's escaping
Home, where my music's playing
Home, where my love lies waiting
Silently for me
                         ―Paul Simon

It's time I wrote about Heaven. I'll do it in two posts. In this one, I'll try to explain what my concept of Heaven is, what Eternity is, and what makes Heaven home. We often hear Heaven referred to as home. We talk about going home. But what does that mean? That's what I want to explore in this post. In the next, A Story Of Heaven, I'll try to imagine what my initial experience in Heaven might be like.

But first, what is Eternity? Eternity is another dimension; a different state of being than what we know. In Eternity, time does not exist. In fact, time and Eternity are opposites. Time and space are part of the physical universe that we know. Beyond the physical universe, or outside it, or above it, is Eternity. Heaven exists in Eternity, not in physical space-time. The observable universe had a beginning, and it will have an end. But Eternity existed before time, and when time ends, Eternity will remain.

This is what the phrase from everlasting to everlasting means. (Psalm 90:2) I think of physical space-time as a bubble. Everything we can observe exists within that bubble. Like the air we breathe surrounds a bubble, Eternity surrounds the universe of time and space, matter and energy.

My point in sharing all of that arcane philosophy is to underscore one of my main points about Heaven: In Heaven, there is no time. Time cannot exist in Eternity. Therefore, in Heaven, there is no past or future. Only an eternal present. And that's one of the things that makes Heaven home.

But before I explain that cryptic comment, let's talk about what home means. Is home a place? Or is it a person or group of people? When you say the word home, do you mean the place where you live? Do you mean the house where you grew up? Or is it something else, something less definable?

For me, home is a feeling. When you first move into a new place, it takes a while for it to feel like home. What is it that eventually creates that feeling of home? There are a number of factors; familiarity, smells, and comfort, among others. But most of all for me, it's people. It's being in the presence of my loved ones. That's what makes a place home.

Since there is no past or future in heaven, that means one important thing. From Heaven's perspective, all of it's already happened. All of history, and all of time that's yet to come for us here on earth is like a distant memory to those who are in Heaven. From the perspective of Eternity, we're already there. This is where I may lose some of you. I don't believe that those who have died before us are watching us here. They're not waiting for us. How can they be waiting when there is no future for them to wait for? In fact, I'm pretty sure that one of the things that makes it Heaven is that there's no waiting.

I believe when I leave this earth, my wife, my family, and all of my loved ones who are still here will have to wait to see me again, but I won't have to wait to see them. When I arrive in Heaven, from my perspective, all of my loved ones will be there, including those still alive on earth from earth's perspective. You poor saps will be still be bound by time, but I won't be.

I think of many dear friends who have lost loved ones and miss them terribly. I'm sorry to tell you I don't believe the one you miss misses you, or watches over you, or waits for you. But it's not because they've forgotten you, or they're so distracted with Jesus right in their face. It's because to them, you're already there.

I believe it's the same for all of us. When we arrive in Heaven, it's like we're the last one arriving at a party. Everyone we love is already there. And it will seem to us like we've always been there. Because from Heaven's perspective, we have. I believe it will feel like home, smell like home, and be the reality of what home was always supposed to mean.

I know there are many for whom home is not a warm, happy place. If you didn't grow up in a happy, loving home like I did, or if you live in a toxic situation now, home may be a place of dread. If you live alone, home can be a lonely place. But deep inside us all, I believe there's a longing for what home is supposed to be. A place of love, caring, support, laughter, and warmth. Whatever your best version of home is, that's what Heaven will be like for you, only magnified infinitely.

There are many other aspects of the afterlife I'd like to talk about, like what our bodies will be, (I don't believe we'll be disembodied spirits, but have resurrected, glorified bodies like Jesus' resurrected body) what our relationships will be like, (Jesus clearly taught that our earthly relationships will not be the same in Heaven) or whether there's really a choir in Heaven with a baritone section I can take over. But that's not what this post is about. It's about going Home.

Home is about love. It's about comfort and safety. It's about being with those we care about. And in our ultimate Home, the One who loves us more than anyone else could is there. He prepared that home for us. All love ultimately comes from him. Everyone who ever loved or was loved reflects his love for us. When we are in the presence of Eternal Love, we are home.

And here's the best part. It never ends. Unlike our earthly home where we are separated from those we love, in Heaven, there is no more separation. We're together forever with the One who loved us so much he wanted us all to live in his home.  

There is more than enough room in my Father’s home. If this were not so, would I have told you that I am going to prepare a place for you? When everything is ready, I will come and get you, so that you will always be with me where I am. (John 14:2-3)
 
In a little while, I will see this with my own eyes. I'm looking forward to seeing you there. I am homeward bound. #waroncancer #bearingwitness

Sunday, November 12, 2017

The Marathon


This weekend was one for the books. It was a marathon. I knew it would be taxing, but I had no idea just how taxing it would be. God got me through it, but I'm starting to understand why hospice patients don't leave home much. All the same, I am not sorry I went through with any of it. And I have no intention of slowing down, because my disease is still speeding up.

I continue to collect symptoms. It seems like there's new one every week. The one that started this week is not very nice, and it's not relevant to this story, so I won't talk about that today. But it's telling that, for the first month of hospice care, I had no symptoms to report to my nurse. Now, I have something new to tell her every time she visits.

The symptom that I was most concerned about going into this weekend was fatigue. That run down feeling I've been having, which seems to be increasing. I can't seem to get enough sleep. No matter how many hours of sleep I get, I still don't feel rested. I'm tired all the time. I had some important events on my schedule this weekend, so I felt I needed some help to get through it.

I told my hospice nurse about this when I saw her last Wednesday. She suggested a steroid called Dexamethason. Say that three times fast. It's supposed to help with energy and strength. I knew I'd need both to get through this weekend, so I asked for some to be delivered. That's one cool thing about home hospice. Everything comes right to your door.

The pills arrived Friday night, and I took one of the pills on Saturday morning. I needed the energy to get through the day, and I'd been told by more than one hospice nurse that I shouldn't take it too late in the day, or it might prevent me from sleeping. I took it at about 7:30 AM.

This was a big weekend for me. On Saturday, The Littleton Conservatory Of Rock, where I am vocal and performance coach, held our first rehearsal for our winter show on January 27th. The rehearsal went from 10:00 AM to 3:30 PM, and that was a short one. I don't need to tell you how important this is to me. Rehearsals are thrilling, but exhausting. I needed energy for that. The steroid worked wonders for my energy level. I felt like I was forty years old again. It was awesome. I still battled some nausea and balance issues, and had to sit down a lot, sometimes at odd moments. But I got through the day with flying colors.

As soon as I arrived at home, Sharon and I headed back out the door to meet our friends Victoria and Andrew. Victoria and I became friends in a support group on Facebook. Her dad passed away of prostate cancer recently. She and her husband Andrew had driven here from Wichita, Kansas, about seven hours away to meet Sharon and me, and visit Denver. We had a dinner date with them Saturday evening. Though I was tired, the steroid kept me going. And I was excited to meet these friends I'd made online face to face.


Our time together was wonderful. We felt like we'd been friends forever. And now we are. When we drove home for the night, I felt good about how the day had gone. I had had enough energy to get through it all, and thought I was tired enough to sleep when I went to bed. But I was wrong.

I could not sleep. The stimulant effect from the steroid kept me awake. As I lay there, buzzing from this steroid, I began to pray. I prayed about the next event of this marathon weekend; my speaking engagement at our old church, Denver First Church. I was scheduled to speak for about ten minutes in two services. I had been praying about this for weeks, but still had no idea what I would say. Each time I prayed about it, I asked God to tell me if he had anything specific he wanted me to share. If I didn't sense him leading me in any particular direction, I'd try to follow where the Spirit led in the moment. Vamping for ten minutes is no problem for me.

I prayed that prayer again last night as I lay there, trying to sleep. This time, God gave me something. A complete, coherent message, lasting about ten minutes, in whole cloth. I got very excited. I ran through it in my head three times while lying in bed, and it stayed with me. I knew what I was supposed to say. I thanked God with tears in my eyes for this message, and asked him to help me do it justice.

Finally, I slept. For about five hours, I think. I awoke at 5:45 AM. I needed to be at the church by 8:30 for sound check, so I thought I was up for the day. But for the third time in eight months, I had an episode like the ones I describe in A Scary Episode and Episode 02. I was overcome by a wave of dizziness, with sweat coming out of every pore in my body. I had to literally crawl back into bed. I laid there for a while, just trying to recover.

I was devastated. How could God give me that message, and then allow this to happen? I couldn't understand it. I thought I'd have to stay in bed all day, and miss my chance to share what God had given me.

I called Hospice first. I explained what happened, and they set up a nurse visit for today. Then I called my friend Shaun, who is the worship pastor at this church where Sharon and I were active for 34 years. It was 6:30 AM, but he was up working. The life of a worship pastor. The services were at 9:00 AM and 10:30 AM. He asked if I could possibly make it to the 10:30 service. We had four hours till then, so I thought that might be doable. I remembered that I got through a Littleton Conservatory Of Rock show the day of my first episode, so as bad as I felt, I knew it might be possible, even though this one had happened much closer to the event time, and I am much weaker now than I was then.

I did make it to the church, but had to move very slowly and carefully. I couldn't stand up for long, so they got me a stool. When the pastor introduced me, I climbed the stairs to the platform slowly, hanging onto the hand rail. It's a big stage, and crossing to the center had never taken me that long before. But I made it to my stool, and delivered the message God sent me there to deliver. The video is on my YouTube channel here.

I went long, as usual. But it was amazing. God was very real. And he proved again that it's not me, it's him. I am so weak, but he is so strong. I should have known he wouldn't give me that message without enabling me to deliver it. That's what he's been doing from the beginning. Using my weakness to show his power. He must increase, but I must decrease. (John 3:30)

I don't know what this experience means with regard to my future. If I can't sleep after taking the steroid, how will I get through rehearsal days? That's a question I'll ask my nurse on Tuesday. I cancelled today's visit. I decided to sleep instead. But I am doing those rehearsals until I can't leave the house anymore. That's non-negotiable. In fact, I still plan on performing in the show.

The last time I saw my nurse Carolyn, I told her the date of the show, and asked her how realistic it is for me to expect to be able to perform on January 27th. She smiled and said I should probably plan on just being a spectator. But I need that goal date. And I need to keep doing what I love. If I don't, I might as well lay down and die. So I want to find a way to keep doing it without a drug keeping me awake. Maybe a lower dose, or a different drug.

You may say it happened because I'm overdoing it. You may be right. But at least I have no more Sunday morning commitments after rehearsal days from now on.

Here's an interesting thing. I just checked the dates, and these episodes have come at intervals of four months apart. The first was in March, the second in July, and this one in November. If that timing holds, and I'm still here next March, at least it will mean I can still get out of bed. They always happen within a few minutes after I get up. But if another one happens soon, I will need to go off hospice care to get it diagnosed. Episodes like that are too dangerous for me now.

But I wouldn't trade this weekend for anything, regardless of the difficulties. For one, I got to hear my protege sing Sweet Child O' Mine by Guns 'N' Roses for the first time. That was worth the price of admission right there. Then to meet such wonderful friends as Victoria and Andrew, and be able to spend some time with them. And to top it all off, my disease knocked me down, but God got me back on my feet and enabled me to fulfill his purpose for me. It was a marathon, but it was more than worth it. #waroncancer #bearingwitness

Sunday, November 5, 2017

Jesus Loves Me The Most


My friend Nikki Nielsen keeps telling me that Jesus loves me the most. Every time some incredible blessing falls into my lap, (which has happened regularly these past two years) Nikki says, "See, Mark? Jesus loves you the most." With a smile on her face. We both know it's a joke. I know Jesus loves us all the same. But when I look at the way things have gone since my diagnosis, I'm starting to think she might be right.

Before you think I'm bragging, read the Gospel of John. He calls himself The Disciple That Jesus Loved! Many times! I bet that made him popular with the other disciples.

I've written many posts where I recount the good things that have happened in my life since I got cancer. I don't want to repeat those posts, but I also don't want to stop counting my blessings. They have been many, and they have been constant. Let's start with the mere fact that Nikki is here. I told that story in Providence, Part Two. God brought her here just when we needed her. He did this. Many others are benefiting from Nikki's presence here, but I'm convinced God brought her here for Sharon and me. Because he loves me the most.

I don't know any other cancer patients who love going to their oncology office like I do. I don't know any who have the amount of support I have. I don't know any other cancer patients, let alone those who have stopped treating their disease and are in hospice care, who have the sheer sense of purpose I was given. All of this didn't happen because I'm so special. I'm just some guy, remember? I didn't do any of this. He did it for me. Jesus must love me the most.

A true friend paid our airfare so we could visit our friends in Texas just a few weeks ago. I told that story in Saying My Goodbyes. By the time we arrived, God had held up the construction of my dear Nicki Morgan's house for almost a year just so she and her family would be there in Jan's house while we were there. As soon as we left, Nicki's house started going up. Clearly, Jesus loves me the most.

I wrote and produced weekly song parodies for radio stations for eighteen years, many of them sports-related. For the last several years, my only remaining clients for this service were in Philadelphia and Houston. When sports teams were winning in those cities, it meant extra work for me. Not extra money, just extra work. I had grown burned out on what had been a really fun career mixing music and comedy. It wasn't fun anymore, and I wasn't making much of a living. But I didn't have that much extra work in my last few years of doing that because the teams in those cities weren't that good. As soon as I retire, the Houston Astros win the World Series and the Philadelphia Eagles are 8-1. Jesus must have kept those teams mediocre to lighten my load, and then as soon as I was on the sidelines, he allowed them to start winning again. He definitely loves me the most.

And can we just take one more look at the embarrassment of riches that was Morsefest? Come on. First, a bunch of people we've never met raised more than enough money for us to go in less than three hours. Then, were were included in the most elite VIP group there; The Hanlon Crew. We were put in the front row both nights. The second night, they interviewed me for the DVD, and put me front and center so I'd be in the camera shot for the DVD taping and final performance of my all-time favorite album. What other possible reason could there be? He really must love me the most.

And of course, that's why he has to take me home early. Because he loves me the most. He just can't wait any longer to see me. I'm thinking there's an opening in the baritone section of Heaven's choir. I am totally taking over that section, by the way. I'm thinking the choir director's been bugging Jesus about it. "Thy will be done and all, Lord, but that guy next to the empty chair cannot stay on his part! We need Mark up here!" And before long, I'll be the substitute director. Anyone who knows me knows it's true.

Of course, I'm having fun with this post. I'm not serious. In fact, every one of us can look at our lives and see evidence that Jesus loves us the most, if we care to really look.

You might think I'm crazy to say this, considering my condition. You may be asking, "Wait a minute, aren't you dying of cancer right now? How can you say that?" I say it because I've seen it. I feel it. I know it. And he keeps on proving it.

Though he slay me, yet will I trust him. (Job 13:15) The closer I get to him, the more I feel his love, and the more clearly I see the things he did for me when I had no clue what he was giving me, or what he was protecting me from. When you get to this point, I hope you can see it too. But right now, it sure looks like Jesus loves me the most. #waroncancer #bearingwitness

Friday, November 3, 2017

In A Hurry


For as long as I can remember, I've been in a hurry. Very few things were more frustrating to me than being stuck behind a slow-moving vehicle, or a slow-moving person. Until I reached my fifties, I always took stairs two at a time. I had places to go, and I wanted to make good time getting there.

I have actually thought many times, when I couldn't get around an elderly person who was moving too slow for me, that the less time we have, the more in a hurry we should be. After all, we're running out of time, right? Of course, my attitude about this has changed. But though I'm not in such a hurry anymore, my cancer is.

In a comment on my last post, my friend Trevor Downing said, "You want to stop rushing things, mate. Heaven can wait!" I replied, "I’ve always been in a hurry. Can’t stop now."

I talked in my last post about what I called the first symptom, nausea and weight loss. To give you an update, the nausea has not been bad today, and my weight is steady. There's a constant undertone of queasiness I feel, but I've discovered that one thing I love makes it worse. Coffee.

I've been a daily coffee drinker since I was sixteen. I don't drink it all day, but I generally have three cups each morning, at least. But yesterday, I met a friend for coffee, and only finished about a third of my Grande at Starbucks. I realized that the coffee was making me feel worse. So I drank water instead, and felt better. I felt very little nausea when I got up this morning, but as soon as I started drinking coffee, the nausea came to the forefront.

I also realized that coffee is an appetite suppressant. Dieters drink coffee to curb their appetite. One thing I don't need is an appetite suppressant. So I have to give up coffee.

This is a huge blow. But as a singer, I've had to go on "coffee fasts." Coffee is not good for your singing voice. It's dehydrating. One of my rules for the singers I coach is, no coffee the day of a show. So I'm used to not having coffee for a few days in a row, though I never liked going without. But now I'm going on my last, longest coffee fast. I hope they have really good coffee in Heaven.

No, tea is not a good substitute. What my stomach wants is water, nothing else. I drink a lot of water anyway, so I can do this. But your sympathy is appreciated. I'm sure that, before too long, I'll wish my biggest problem was not being able to have coffee.

There are a few other changes in how I've been feeling, as well. These are both very recent changes, like within the last week. For one, I'm having trouble with balance. Not vertigo or dizziness, just feeling unsteady on my feet. I usually need to hang on to something when I go up and down stairs. I take stairs slowly now, most of the time. But I'm still taking the stairs.

I also have to break a lifetime habit of standing up fast. When I do that now, I tend to feel lightheaded, and need to grab on to something. Its not an occasional thing, like we all experience. It's every time. So I have to learn not to be in such a hurry.

I also feel like my body is running down. I seem to have less energy, strength and stamina every day. I'm sleeping better, so I don't think it's that. I just feel like an old car that there's no point in trying to repair. I'm beyond repair. I've been totaled.

I have to say that I'm a bit shocked at how fast this is happening. I thought I'd have more time feeling like my old self. I even thought I might start to feel better when hormone treatment began to wear off. But that hasn't been the case. I got about a month of hospice care before I started to show symptoms. I expected more.

But I shouldn't be surprised. This is the way this disease has gone from the beginning. Everything has happened faster than predicted. And the rest will too. All my cancer has done is accelerate. Sure, we've been able to slow it down temporarily a time or two, but it always came roaring back, faster and meaner than before. There's no reason to believe that, now that we're not treating it, it will decide to slow down. As a matter of fact, it's spiking.

It's like the expansion of the universe. According to recent observations, the universe is expanding at an accelerating rate. There isn't enough mass in the observable universe to slow it down, much less reverse it. It will continue to expand until the last star dies, and all that's left is a dark soup at absolute zero.

Likewise, my cancer will continue to accelerate until I am no more. Please listen to me, my dear friends. I know I'm breaking your heart right now. I know you don't want to hear this. Neither do I. But I must be a faithful witness. This is happening, and fast. People I love very much are telling themselves a story right now about me living longer than expected. I want to let you down gently, if I can. Please just ask yourself what in my history indicates that I will beat the odds. Not a thing. If past is prologue, we know how this will go.

The cancer cells in my body are not an alien organism. It's not something I picked up from someone sneezing on a bus. It's part of me. These cells originated in my body. That being the case, is it really such a surprise that a guy who hurried throughout his life would hurry toward his final destination? Not intentionally, but because it's how I was made.

If you love me, please stop telling yourself I'll be fine for a while. I'm not fine now. Please don't tell yourself we have plenty of time. We don't. I'm still hoping and planning to do everything on my schedule for the next few months. But with each day that passes, I wonder more and more if that will happen. My cancer is in a big hurry.

I'm sorry this post hasn't been more uplifting. There are no jokes, and God doesn't make an appearance. And I'm sorry I feel the need to put this in your face. But if you care for me, you need to understand what's happening. I will not be one of those who outlasts the six month hospice time period. I will go home with time to spare. It's what my heart tells me, and what my history with this disease tells me. If you want to see me while we still have an opportunity to do something fun, you'd better hurry. Because my cancer is in a hurry. #waroncancer #bearingwitness

Tuesday, October 31, 2017

The First Symptom


Day 35 of hospice care. I now have symptoms.

It seems a bit incongruous to have a picture like this at the top of a post as serious as this one. But I won't let this disease keep me from having fun. But before I get to my visit with my team, I have to tell you about my appointment this morning with the main member of my new team, my hospice nurse, Carolyn.

She arrived at our house at 10:30 this morning. For the first time, I had news for her. I told her about the trouble I've had sleeping. She didn't think that was a symptom of my cancer. I told her that I think it might be the last batch of cannabis oil I got from my caregiver. I'll talk to my caregiver and try a different batch before I ask for sleeping pills. That oil has never kept me awake before. Just the opposite.

I'm actually glad for the mostly sleepless night I had last night. It gave me a chance to write The Last Encore. I'm glad I was able to report on that important event in my journey. But now we're back to hard news. Very hard.

After I told Carolyn about the insomnia, I told her about nausea and weight loss I've been experiencing for a few days. She considers this a symptom of my cancer. If true, this is very disappointing. Remember, I wasn't expecting symptoms until closer to Christmas. If they started before Halloween, that's really bad news.

She told me about a drug for nausea in my Comfort Kit, the Mysterious Box in my refrigerator. Ondansetron. Isn't that a Transformer? After she left, I was feeling pretty nauseous, and took one of the pills. I hated opening that first bottle of pills from that box. It seemed like a concession. It makes it more real, somehow. I'm now using something from that box I never wanted to open again. And only five weeks after starting hospice care.

The bottle said nothing about taking it with food, so I took the pill on an empty stomach. It made my nausea worse. I had to lie down until it passed. That wasn't encouraging. For a while I wondered if I'd be able to make it to my doctor's office for my consultation. But I managed to eat something, which settled my stomach a bit, and I went. But before I did, I put on my red suit.

Today is Halloween. When I set this appointment, my friend LaShay told me they were dressing in 1980's garb for the holiday. So I decided to join in the fun. I still have all of my skinny New Wave ties from that decade. I thought I'd wear one of those ties. But then I remembered that Sharon had made me a bright red suit in the 80's, modeled after the one Huey Lewis wears in a music video. As you can see, she did an amazing job.


When she made that suit in the mid 80's, I had a 28 inch waist. The last time I tried these pants on, I couldn't fit into them. I probably weighed in the upper 130's at the time. Now I'm losing weight because of the nausea, so those pants fit again! I knew that's what I should wear to the office. I wasn't just wearing 80's clothes, I was going as someone!

When I walked in, they all loved my outfit, and we took the picture at the top. It was really fun. I almost blinded my doctor when he walked into the room, though. I offered him my sunglasses. It was great to see him. I told him about my nausea, and he wasn't ready to say for sure it's a symptom, but he agreed that's the most likely explanation. He recommended I try taking Ondansetron sublingually, so it doesn't hit my stomach so hard. I'll try that next time.

But I also told him that I had discovered that what they say about medical marijuana is true. It really does help with nausea and appetite. Being a medical marijuana patient, I do have some, though I prefer the oil. But the suppositories never helped with appetite. Apparently, it's best to smoke or vape it for that. So yesterday morning, after I woke up feeling very nauseous, I decided to try it. Thirty minutes later, I was hungry. So that's a solution I can use when I don't have anywhere to go. I'll also try CBD, which is non-impairing. Better that than a pill, in my opinion.

But one way or another, we have to get a handle on this. Gaunt Cancer Guy is knocking on the door. Sooner or later, I'll have to let him in.

My doctor and I talked for a while, and I finally pressed him for a new prognosis. I had told the office I wanted one based on the new PSA number, 13.2. He said my cancer is growing at a steep rate. He knows that my cancer moves very fast, and keeps growing faster. But he wouldn't give me a number. All he would say is "months."

At the same time, he acknowledged that the appearance of my first symptom this early is disappointing. It's not likely to get any better from here. It will only get worse. Everything has happened sooner than predicted with this disease. And the pace keeps increasing.

While my doctor wouldn't give me a due date, here's what I know. They don't put you in hospice care unless you have six months or less to live. I've been in hospice care for 35 days. You do the math. And that's the maximum. If past is prologue, it's likely to be less. Maybe much less.

But I didn't let my discomfort or disappointment keep me from having fun today, nor will I in the future. And I still believe that, despite the odds, if God wants me here, I will be here. I still have things to do, goals to meet, and people to love. I'll keep doing that for as long as I can.

I've never written two blog posts on the same day before. But I've never had two such important events happen so close together, either. The last encore and the first symptom are connected. It's all one story. A love story. A story about a dying man who plays in a rock band with teenagers and wears red suits to the doctor's office. A story that's funny and sad at the same time. A story of meaning and purpose. A story with a beginning and an end. And all good things must come to an end. #waroncancer #bearingwitness

The Last Encore

Wik performing The Great Gig In The Sky

Day 35 of hospice care. Symptoms may have begun. I hope to find that out today. Stay tuned.

Prog Fest was everything I hoped it would be, and came with unexpected blessings. It was exactly what I needed. One more chance to perform with friends, and another chance to reconnect. A chance to say goodbye.

I've been having some trouble sleeping lately. I'm writing this at 1:45 AM right now because I can't sleep. But Friday night, I had a great night's sleep. I was rested and energetic for Wik's rehearsal on Saturday, the day before the show. But I always have had trouble sleeping after an evening rehearsal. This one started in the late afternoon, but that was enough to keep me from sleeping well. So come Sunday, the day of the show, I was running on fumes. As a result, my energy and balance were not what I hoped they'd be. But adrenaline is a wonderful thing. Adrenaline and love carried me through.

Sharon and I arrived early. I was needed for sound check, so we showed up around 3:00 PM. The show started at 4:00 PM, and lasted until 10:00 PM, an hour later than scheduled. Typical Prog show. Our friends Dave and Stacey showed up at about the same time so we'd have a chance to talk. But our conversation kept getting interrupted by more friends arriving who wanted to talk to me.

Two friends from my wedding singer days, Jerry and Kathy, showed up out of the blue. I had no idea they were coming. It was a touching reunion. Jerry's wife Becky had died of cancer several years ago, and a drummer we had all worked with for years had died the year before, also of cancer. I told them that after Becky's memorial, I had taken to telling my friends from those days that I hoped the next time I saw them, it wasn't at a funeral. I also found myself wondering, after two deaths in that circle of friends in a year, who would be next. I never thought it would be me, I told Jerry and Kathy. Cancer again. Stupid cancer.

More friends came, and as usual, our party consisted of two tables put together. But there was one reunion that stood out.

I found out a day or two before the show that my high school girlfriend and her husband were coming. Joy and Mickey. I hadn't seen Joy since 1973, my senior year of high school. You might think this had the potential to be weird or awkward. I wondered if it would be. It wasn't. It was awesome. She and Sharon got along well. Joy and I talked about old times. We remembered what had connected us.

I enjoyed talking with her husband too. A great guy. At one point, the fact that I had broken up with Joy back in the day came up. She didn't remember why, but I did. I told her it was because I had felt it was God's will. I've often looked back on that decision as a bonehead move by a dumb teenage boy, but shortly after that, her family moved away, and I went off to college, where I met Sharon. Joy went to college elsewhere, and met Mickey. Mickey pointed out to me that I had probably been right. It wasn't God's will for us to stay together. We were both supposed to marry someone else. Sharon and I have been married for 40 years, and Joy and Mickey have been married for 36. God does all things well.

Wherever I went that night, friends wanted to talk and embrace. Love and sorrow were in the air. But reunions with old friends and love exchanged between so many more were only half of the blessing. I also was there to perform in public for the last time.

At last year's Prog Fest, (an annual progressive rock festival put on by The Colorado Art Rock Society) I put together a huge ninety minute set of "bucket list" songs. I had a veritable cast of thousands, and it was a mammoth undertaking. This year, I was only involved in two easy sets for me, and I was a sideman rather than the leader in both. Perfect for this stage of my life. I was asked to sing the last song of the night, an old Genesis classic that I've known for decades. I only had to show up for one rehearsal for that. Easy peasy. The other set was the public debut of the band I'm in with my friend Todd and some talented teenagers. Wik.

Let me put this in perspective. I'm a 62 year old Stage 4 cancer patient in hospice care, and I'm in a band with teenagers. Who does that? I guess we know who does that. We had been rehearsing for this performance for at least six weeks, maybe longer. Prog Fest performances are often done by ad hoc bands, and tend to be a little under-rehearsed and sloppy. That's part of the fun. But we wanted to get this performance on video for the launch of Wik's Facebook page. So it had to be polished.

The band played the first two songs without me. We've written one original song as a band so far, and they performed it in front of an audience for the first time. It rocked. When I took the stage, I made a joke about how last year was my big finale, but I never could resist an encore. This was my encore. The last encore.

It was very emotional for me. I was only onstage for three out of the five songs Wik played, but I was loving every minute of it, whether I was up there or not. Everyone nailed their parts. The whole band could feel the energy of the moment. And Colorado progressive rock fans found out about a very special singer. My protege, Payton Roybal.

Payton hadn't performed since our 40th anniversary party in July, yet somehow, she was easily better onstage than I've ever seen her. Intensity poured from her the entire set. And she saved her best for last.

Our last two songs were from Pink Floyd's Dark Side Of the Moon; Time and The Great Gig In The Sky. The Great Gig In The Sky is one of the greatest vocal solos in the history of rock. We chose it specifically to show Payton off. She nailed it, beyond even what I was expecting. And my expectations were high. Every time I think I've set the bar high for her, she exceeds my expectations. I had heard her sing it in rehearsal several times, but she sang it last night like I'd never heard her sing it before. A video of it is on my timeline now.

I did the speaking part that I refer to in To Know Or Not To Know. The one that starts with I'm not frightened of dying. Tears were shed at our table and elsewhere. It was a special moment. Afterwards, Jerry and Kathy came up to me to say their goodbyes. Kathy was in tears. My little speaking part had hit her hard. Kathy has always loved me, and the feeling has been mutual. Hearing me say those words was hard for her, as it was for many there. But it was the exact right song for that moment. And I was the exact right person to deliver those lines.

I'm bursting with pride today because of how the band performed. And I'm humbled by the protege who will surpass her mentor. Who already has, in many ways.

I'll meet with my doctor and nurse tomorrow. Actually, it's today, since it's 2:47 AM as I write these words. We’ll discuss the possible appearance of my first symptom, and get a new prognosis from my last PSA result. It’s a big day. Your prayers are appreciated. I'll write about all of that after I come home and share the news with those closest to me. But I couldn't let this important event in my life go unreported. I have to bear witness. My next post may bring bad news, but this one is about love and completion.

My performing career is now complete. I've performed my last encore. And I felt the love all the way through it. #waroncancer

Monday, October 23, 2017

Saying My Goodbyes

From left to right: Sharon, me, Callie, Nicki, Jan

Day 27 of hospice care. Still no symptoms.

It’s been a long weekend of goodbyes, extending into Monday. I went into it with the intention of saying my goodbyes to some special people, but I didn’t end up saying the G word all that much. The past three days were really about the L word.

I met with my nutritionist Katie today. I’ve talked about her before, especially in two posts; My Manna From Heaven and The Road To Zero. For those who remember her real name, she asked me to use this alias for my blog and book. I am happy to protect her privacy. Not everyone is a showoff like me.

Katie saved me from unintentional weight loss twice during my journey. What I learned from her was priceless. I learned how to eat to keep weight on. This is why both of those chapters will be in my book, Bearing Witness. I know I’m not the only skinny guy with cancer who battles that problem. If you are and you do, read those posts.

When I said goodbye to my oncology team a few weeks ago, I found out Katie had left. So I’d missed my chance to say goodbye to one of the most valuable members of my team. Well, I couldn’t allow that to happen. I had to track her down. I found out she was now working at University Hospital, the same one where I had my consultation for clinical trials. In fact, Katie now works for the oncologist who interviewed me. University Hospital is a huge complex with several campuses, so it was pure luck that I called the right place and found her fairly easily. Or maybe it wasn’t luck.

I left Katie a message last week, and she was kind enough to call me back. She remembered me, and though I’m no longer her patient, being in hospice care, she agreed to meet with me so I could say my goodbyes.

I'll admit I got a little emotional when we met today. I owe this young woman a lot. I asked her if she gets that kind of thing much, patients tracking her down to thank her and say their goodbyes. Not very often, she said. Many patients have difficult memories of their time in treatment, and don't want to go back there. But I've made plain how much I love my team. I still get to see the rest of my oncology team when I go in for consultations once a month, but Katie won't be there. That's why I had to find her.

I gave her printouts of the chapters in my book about my consultations with her. That's when I learned she didn't want me to use her real name. I told her that she had the misfortune of having a patient who is a born performer, and can't do anything without an audience. Including die. My natural tendency, as you know, is to blow up everyone I love on social media. But not everyone wants that. So before my book comes out, I'm methodically asking people's permission to use their name in it. If I've talked about you in this blog, you may get that question.

I also gave Katie a cross pendant. I figured she needs one, since she helps cancer patients every day. Katie and I didn't have a real friendship. We only met a few times. But I couldn't just let her slip out of my life unnoticed. I had to say my goodbyes and thank her for all she's done for me. It's who I am now.

Last weekend, however, was about doing this with real friends. As real as real gets.

Last Friday, Sharon and I flew to the Dallas/Fort Worth, Texas area to visit our close friends Jan Koch, Tony Koch, and Nicki Morgan and their families. Tony and Nicki are Jan’s son and daughter. Sharon and I watched them grow up when we were in our 30’s and 40’s. Our families have been close friends since the 1980’s. Now, Tony and Nicki have families of their own. I wrote about this family in Introducing The Kochs. Their father Galen passed away almost seven years ago. I’m ashamed to say that this was our first visit there since his funeral.

My first reason for wanting to visit them at this time was to say my goodbyes to these three people. I thought it would be my last chance to do so face to face. But in most cases, it was impossible to say goodbye. We know we will see each other again, either here or there. But I’m hopeful that I’ll see at least one of them here again. On this side of the curtain.

Jan is the kind of friend that’s like family, and we always pick right up where we left off when we see each other, no matter how long it’s been. Jan and Sharon have been friends for decades, and Jan made Sharon a promise this weekend that meant the world to me. They will have something in common soon that none of their other friends will understand. The fact that Sharon will have Jan in the coming years is an immense source of comfort to me.

My time with Tony was very heartfelt. He reminds me so much of his dad, it's spooky. Right down to his laugh. When Tony laughs, I hear Galen. But I also see Galen in Tony's calm, thoughtful manner. Many of our conversations reminded me at once of serious conversations Tony and I had when he was growing up, and philosophical conversations I had with his dad. Tony is a great man that I feel blessed to call family. We said our goodbyes on Saturday night at Tony's house. It was a very meaningful time.


Nicki, her husband Josh and their three kids live with Jan right now while their new house is being built. So we got to spend much more time with them than we would have otherwise, which was perfect for me. I know Nicki’s very frustrated with the amount of time it’s taking for their house to be ready, but I was glad, because it meant she was with us.

I gave Nicki this montage, printed and framed. It's shows how our relationship has pretty much stayed the same since she was very young.


Nicki and I have had a special relationship and a powerful bond since she was an infant. She’s in her early thirties now, and not having had children of my own, she’s the only person in my life that I’ve had that kind of bond with at every stage of her life, from infancy to adulthood. She’s the closest thing I have to a daughter.

When the time came for me to say goodbye to both Jan and Nicki, I couldn’t do it. All I could do was tell them how much they mean to me. All I could do was make sure nothing was left unsaid. That’s what I mean by saying my goodbyes. I might not actually say goodbye. I might just make you sit still while I tell you how much I love you.

But in the midst of goodbyes, there was one big hello. One of my goals for this trip was to bond with Nicki’s daughter Callie. From everything I’d heard, she’s just like her mom was at that age. Which meant I had to meet this girl, come hell or high water. I wondered as we planned this trip and as we traveled whether meeting Callie would meet my expectations. Callie is five, and measuring up to five year old Nicki is a tall order. But I also wasn’t sure Callie would warm up to me. You never know with kids. So I tried not to get my hopes up.

The rumors were true, beyond my wildest dreams. It took maybe twenty minutes for Callie to climb up in my lap. As the weekend went on, we drew pictures, played games, and I pushed her on the swing. Each time we went out to eat, she wanted to sit next to me. We bonded almost instantly, just like her mom and I did almost thirty years ago. It was amazing. Nicki’s three year old son Kellan also seemed drawn to me, and I’m told he’s normally shy. The first night, Nicki said it was like “suffer the little children and let them come to Mark.” I loved it.

I doubt Kellan will remember me, but I’m sure Callie will. Sharon and I made an impression on her, and she definitely made one on me. What I wouldn’t give to be in her life all the way to adulthood like I was with her mom. Like Sharon will be. But being remembered will have to be enough. That's true for so many young people I've gotten to know since I was diagnosed. I wish so much I could see you reach your potential, but being remembered will have to be enough for me.

The G word for this weekend wasn’t Goodbye, it was Gratitude. I am grateful for a nutritionist like Katie, and friends like Jan. I am grateful for beautiful children who become admirable adults, and who are like what I hope my children would have been. I am grateful for the time I got to bond with one little girl. I am grateful for love.

Saying my goodbyes doesn’t necessarily mean saying goodbye. It means making sure nothing is left unsaid. One of the few good things about dying this way is it gives me time to say my goodbyes. It gives us time to say whatever needs to be said. That’s what I did these past three days, and it’s a big part of what I’ll continue to do until my time comes. When it’s your turn, we might not even say the G word. We might just talk about love. #waroncancer #bearingwitness

Saturday, October 14, 2017

Just Some Guy


Day 18 of hospice care. Still no symptoms. But the results of my last PSA test came in. It's 13.2, up from 5.45 a month ago. The clock is ticking. When I see my doctor on the 31st, I'll ask for an updated prognosis based on that number.

People were very kind in their comments on my last post. Too kind, really. Now, far be it from me to shy away from compliments, but I have to disagree with some of the things that were said, as nice and complimentary as they were meant to be.

One dear lady called me an angel. My response was that I'm no angel, I'm just some guy who God decided to show himself to. Whatever good you think you see in me has nothing to do with me. It's nothing that I achieved, it's something that happened to me with little or no effort on my part. Kinda like cancer. And it wouldn't have happened without cancer, either.

One quality that seems to be coming to the forefront now, however, is one that has always been part of my nature. It's not something I learned in my journey, or that God granted me since he drew me so close to him. It's something I've always had, like curly hair and brown eyes, therefore I can't take any credit for it. I've never been afraid of dying. I can't remember one time in my life when I thought about death and was afraid.

I've been in a few auto accidents, and once or twice I thought my number might be up. In that moment right before the crash when I realized there was nothing I could do, I've never felt fear, only peace. That tendency seems to have carried over to now, when facing a short prognosis. I feel no fear at all. Not just about death, but about anything.

In the comments of my last post, many called me brave. I appreciate your kindness, but I am not brave. Bravery, or courage, is not the absence of fear. It's the ability to overcome fear. I'm no hero, I'm just some guy who's run out of things to be afraid of.

Who is brave, the one who dives from a tall platform because they're not afraid, or the one who dives in spite of their fear? I have no fear of the platform or the water. For me, this dive is like falling into bed. It doesn't take much courage to fall into bed.

I was talking with my friend Miki Chambers about this recently. She had a hard time understanding how I could be so calm about all of this. I told her I didn't become a saint on purpose. It just happened. One day, God decided to show me the reality of who he is, and all I could do was say, "...Oh!"

I wrote a post a while back called What I'm Afraid Of, which Miki inspired. Even then, more than a year ago, I had no fear of cancer or death. There were a few things I feared, but none of the things I was afraid of then apply to me now. I was afraid of long term side effects from treatment. Now there is no long term. I was afraid of spending my remaining years in misery from harsh conventional treatments, and having cancer come back and get me anyway. Hence my attitude toward chemo and radiation. Now, all of that's a moot point.

But mostly, I was afraid of depleting our limited financial resources and leaving my wife with little to live on. Now, that doesn't seem possible. God has taken away all my sources of fear. There's nothing left for me to be afraid of. When you have no fear of death, the closer you get to it, the less anything else can make you afraid.

The results of my last PSA test are bad, but nothing to be afraid of. Symptoms are coming soon, but while I'm not looking forward to them, I'm not afraid of them. I know they will only last a short time. God keeps coming closer, and soon I'll be able to make out his facial features. Just like when I was a little boy, and I felt safe walking next to my dad, I feel safe now, because I have my Heavenly Father walking with me. He's bigger than any bully, any disease, and even death. Nothing can hurt me because he protects me.

He doesn't do this because there's anything special about me. He does it because it's who he is. I'm only this way because he revealed himself to me. I'm no angel, hero or saint. I'm just some guy. #waroncancer #bearingwitness

Wednesday, October 11, 2017

Last Times


Day 15 of hospice care. Still no symptoms.

I had my last flu shot and PSA test today. It's my last PSA test because that is not normally covered by Hospice. They're approving it one time for prognostic purposes. I just want the information so I can report on it. I want to monitor my disease and bear witness. But if I want to do that in the future, I'll have to pay out of pocket for it. So this was probably the last one.

And of course, it's my last flu shot because, well, I won't be here for the next flu season. Normally, flu shots aren't recommended for hospice patients - at least by Denver Hospice - because hospice patients usually don't leave home much. But I still go out and about, and intend to do so for as long as I can. I also work with kids. 'Nuff said. I get the flu shot. But it's my last one.

I find this phenomenon happening with increasing frequency these days. I'll be performing some mundane task, like driving somewhere or buying something, and I'll think, "that's probably the last time I'll do that." It's very weird.

I know you don't want me to talk like this. Just let me remind you that symptoms are expected by Christmas at the latest. I may look fine now, but I'm not. I did take the stairs today, though.

This happened last Saturday, on our way to the home of friends who live about a fifty minute drive from our house. We get together about once a month, and alternate being at each other's homes. We've done this for decades. On the way there last Saturday, I realized I was probably making that drive for the last time. According to our plans at the time, we wouldn't be driving back there until January. Will I be up for a fifty minute drive in January? Hard to say. I suspect not.

Two weekends from now, I will visit close friends for the last time. My wife is going with me, and I doubt it will be her last time. I imagine there will be some girls' weekends around Jan's pool for Sharon and Nikki in the future, but for me, it's the last time. I'm going to say my goodbyes. If possible, however difficult, goodbyes should be said in person. The more you love someone, the more true that is. And we love our friends very much. They are chosen family, and have been since the 1980's. We will hang out and have lots of fun, but when the time comes, we will say our goodbyes. Because it's the last time.

Wik, the band I'm in, is rehearsing for Prog Fest every week until the show on October 29th. I've performed at this annual event many times since 2006, but this is my last one. No way I'll be here next October or November. I'm happy to be onstage for this event one more time, and even more glad I'm not in charge of any of it. Normally, I'd already be thinking about what I want to do next year. But these aren't normal times. I know this is my last Prog Fest.

I'm as grateful as I can be that I expect to still be at full strength with no symptoms by then. But I don't necessarily expect that for the next performance on my schedule.

The winter show with The Littleton Conservatory Of Rock, where I am vocal and performance coach, is in January. Roughly the same time I'm unsure if I'll be able to drive for fifty minutes. The energy required for driving is minimal compared to getting ready for and putting on a show. But this show is very important to me, because it's my last one.

The object for me is not to perform. I'm a coach, and my job is to get the kids onstage, not myself. But I must admit that I do put myself onstage more than I should for one selfish reason; I want to sing with my singers. I want very much to do that one more time, but I have to approach this show differently than I have others. Because it's not certain I'll be able to take the stage at all by then. I might be in too much pain, or look so bad I don't want to get onstage. Or I might not be able to get out of bed.

So while I prepare to be onstage at times, if I can, I have to make sure someone else knows and can cover my parts if I can't. But believe me, if I can leave the house, I will be at this show, whether I can perform or not. Because it's the last time.

But it's not always bad to be doing things for the last time. Here is a list of other things I've done for the last time:

1. Go to the dentist
2. Go to the DMV
3. Buy tires
4. Pay income taxes
5. Endure another national election

And the list goes on. See, there is an upside!

While I walked into the doctor's office today to get my blood drawn for my last PSA test, there had been a fire drill, and the strobe lights were still on. I walked up to reception and saw my friends Anne and LaShay. It was my first time seeing them since our tearful goodbye about a month ago, which I recount in The Hardest Part. After we said hello, I joked that I'm so hot the fire alarm goes off when I walk in the door! Nikki, my doctor's MA, drew my blood for the last time. It was awesome seeing her too.

On my way out, I made an appointment to consult with my doctor. He was my oncologist, and now he's my hospice doctor. You may remember that I found out in our first visit with my hospice nurse that if my oncologist agreed, he could be my hospice doctor, enabling me to continue seeing my team for a while. I didn't lose them after all. They were right where I left them.

Apparently, it's unusual for a former cancer patient in hospice care to want to come in once a month to consult with him, but I'm an unusual guy. You may have noticed. I'm very happy and blessed to be able to say that, though this was my last PSA test, it's not my last visit to see my team. I'll keep seeing them for as long as I can get over there.

When the time comes, if we are close, let's make sure we say our goodbyes face to face. Even if we think it's not our last time seeing each other, we don't know that for sure. We never have. Treasure the moments you have in life. You never know when it's the last time. #waroncancer #bearingwitness

Wednesday, October 4, 2017

The Mysterious Box


Day 8 of hospice care. Still no symptoms.

We had appointments with two members of our Hospice team yesterday; my new nurse and our social worker. Both appointments were very informative and enjoyable. I'm starting to like my new team.

I should have said up front in Welcome To Hospice that too many people think hospice means you're on your death bed. That's the image we have in our heads, but it's not the reality most of the time. Most people do hospice at home. All hospice means is you're no longer treating your disease. Instead, you're focusing on quality of life.

Both ladies started by telling a bit about themselves, which I appreciated. I don't think I've ever had a medical professional begin that way with me before. The whole idea is to build relationships and make sure everyone is comfortable with one another. That's one thing that sets Hospice apart, in my limited experience so far. I'm looking forward to building relationships with these people.

My nurse's name is Carolyn. We covered a lot during her visit, most of which I won't bore you with here. She did everything you would expect from a first visit with a nurse, including examine me, take my pulse and blood pressure, and all that good stuff. She asked about how I feel, and if I had any medical needs. Right now, I have everything I need. But what I was waiting for was to open that box in the fridge.

After our meeting last week with the admitting nurse, a couple of additions had been made to our house. First, according to instructions, we placed a magnet on our refrigerator. It has the Hospice phone number on it. This is the first time anything has been affixed to the outside of our refrigerator in the 40 year history of our marriage. My wife is adamant about not sticking things on the refrigerator. But things have changed.


I asked her which was worse, her husband being in hospice care, or having a magnet on the fridge, and she had to think about it. Underneath the magnet is the Do Not Resuscitate form, right where EMT's are trained to look for it. So that's a new addition to our decor.

Then there was the mysterious box in the fridge, with the warning sticker on the outside, pictured at the top. That sticker was the only thing that kept me from tearing it open as soon as it came last week, but I patiently waited for my nurse to arrive, like a good boy. Here's what was inside:


Right there in front is our main attraction, Morphine Sulfate. The party's at our house. Just kidding. It's at your house. But seriously, folks, I hope I don't ever have to open that bottle. It's for what they call "breakthrough pain." I'll stick with the spiritual breakthroughs, thank you very much. The rest of the meds were for various things that hospice patients tend to need at some point. She set up a bi-weekly visit on Tuesday mornings.

My nurse, my wife and I talked for at least an hour about various things. When we went to my office for the examination, she saw the VIP lanyards from concerts I have hanging there, and my collection of Neal Morse posters. She asked about him, and I found out my hospice nurse is a progressive rock fan! So when she comes back in two weeks, we will listen to some Neal Morse!

 

Shortly after Carolyn left, our social worker arrived. Her name is Desiree. Her area of concern is our mental, emotional, and spiritual well being. She talked to my wife at least as much as she talked to me. I assured her that I have a therapist and a pastor, so I don't think I'll need their chaplain or their mental health services. But they have many ways to help my wife, and I'm very grateful for that.

I stressed in both visits that my priority is not comfort, but lucidity, so I can interact with visitors, and continue to write for as long as possible. I don't know if there's anything in that mysterious box that will do that, but she said there are lots of options. Both ladies reiterated how good Denver Hospice is at pain management. I'm counting on it.

At one point, Desiree asked me if I was sad, or depressed, or afraid or something, and I said I'm in a really good place because I have no symptoms, and I have a sense of purpose. I talked about this blog, and how I'm working on turning it into a book. That's my main purpose. To bear witness.

But I also have another purpose. To pass something on to some young musicians I've become attached to, and to help launch one career.

When you have a prognosis like mine, it helps to have goal dates. Dates that you look forward to, and don't want to miss. The next date like that for me is in January, though I'm not sure of the exact day yet. It's the winter show for The Littleton Conservatory Of Rock, where I am the vocal and performance coach. My intention is to be a full participant in that show. But January may be pushing it for me, with symptoms expected by Christmas. So I have to teach all of my parts to someone else, so they can cover them if I can't. But just having that date to shoot for helps my sense of purpose. It's a box I'm looking forward to opening.

One my greatest joys in working with this group is two of the singers I get to coach. Ally and Payton. I should probably call Ally Alexis, since that's her real name, and nobody can agree on how to spell Ally. Ally has a heart of gold, and voice to match. She and I are similar types of singers. We both have a good ear, are good at singing harmony, blend well with other singers, and have great musical instincts. And we're both in awe of Payton.

You may have seen me refer to a young singer I call my protege. That's Payton. I haven't used her name until now because she's been underage. But she turns eighteen tomorrow. Then I'll be able to use her full name, and I'll have trouble shutting up about her. Not that I'll try. Payton is one of those once-in-a-generation type singers. Watch out for her in the next few years.

I had coffee with these two delightful girls yesterday to celebrate Payton's birthday. Payton's mom Marni was there, and took this picture of us.


Ally's on the left, and Payton's on the right. Our time today was about celebrating Payton's birthday, and about passing something on. I had a mysterious box for someone else to open. I was able to bless her in a way that will hopefully help her get started long after I can't help her in person anymore. Because it's her career I'm supposed to help launch. Helping Payton as much as I can for as long as I can is one of the things I'm supposed to do with the rest of my time here.


I received another blessing yesterday as well. A mysterious box arrived in the mail. I opened it to find a piece of original artwork by Padi Faraji, a friend I've made online through my blog. I think we connected through Fabian Bolin of WarOnCancer.com. Padi was one of my first Twitter followers. She followed me on Twitter before we became Facebook friends. Her comments on my blog have always been very sweet. She is an amazing artist, as you can see. Follow her on Instagram to see more of her beautiful artwork. She sent me this piece all the way from Japan. We have it in the perfect spot in our home. It's indescribable to have friends in all parts of the world who I will never meet face to face, but who still care this much. I'm deeply grateful to you for this, Padi. It means a lot to me.

For me, this was a day of blessing. A day of mysterious boxes, both to give and receive. Yes, I'm meeting with my Hospice team and discussing end-of-life issues. But both meetings were a blessing because of the people. Because of the relationships that were begun. I received a blessing from a friend who lives far away. And my meeting yesterday afternoon was a blessing because of the relationships. But this time, I got to bestow the blessing instead of receiving one. And that's much more fun. 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 have been blessed, so I must be a blessing. Otherwise, the blessings I receive go to waste.

There are more hospice team members I have yet to meet. I won't need a Nurse's assistant to help me bathe or anything anytime soon, but there is a therapy I expect to start that I'll tell you about when we begin. It's something my friend Amber would call "hippie crap." Only she wouldn't say crap. I am an aging hippie, so I'm looking forward to trying it. Another mysterious box to open.

The rest of my life will be a series of mysterious boxes. I just hope I can give as many as I receive. #waroncancer #bearingwitness

Saturday, September 30, 2017

To Know Or Not To Know?


Day 4 of hospice care. Still no symptoms.

Is it better to know in advance that you are dying, or that a loved one is? Or is it better to have it happen suddenly, without warning? It depends on who you ask. There is sharp disagreement among my own loved ones about this.

Many will not like this post. It's one I've been waiting to write since June of 2016, when I read a Facebook post from my friend Trevor Downing. Trevor and I have very different spiritual beliefs. He's an atheist and I'm a Christian. But we are very much on the same page when it comes to our view of mortality. Here is what Trevor said in his post:

I consider myself fortunate to have an idea of when I'm likely to die. It has allowed me to make peace with the world, to say my goodbyes, to get used to the idea of being here no more. Most people have no idea that they are about to die, so leaving unfinished business, and not making the most of their last days. Cancer for me was an opportunity to become a better person. I don't worry about death as I have little control over it when it comes. Each morning I awake and enjoy life as I'm still here.

Trevor's post resonated deeply with me. I've saved it all this time, waiting for the day I could write about this without people calling me a defeatist. I've had that happen a lot, in spite of what most would call a very positive attitude. Trevor has accused me of this in the past. In fact, he proposed a wager as to whether I'll still be here for New Years Eve, 2020. The trouble is, I have to die to win the bet. Smart man.

I agree completely with what Trevor wrote. I like knowing what's coming, and approximately how much time I have. It helps me plan and prioritize. It's a great motivator. I know my time is short, so I'd better get busy while I can. It gives me the chance to say my goodbyes. It helps me to make sure there's nothing left unsaid or undone. It gives me the time to document the whole process over a two and a half year period. It's given me time to change and achieve things I never would have achieved otherwise.

Since I feel this way, I've felt it necessary to tell people who might not know what's going on. I don't want them to be shocked when I suddenly start to deteriorate in front of them. But maybe that wasn't the best thing for everyone I've told.

Another wise man, Mark Brewer, once said, "The good thing about cancer is, it gives you time. The bad thing about cancer is, it gives you time." For some, time is not a luxury.

I have friends who have lost loved ones in a variety of ways. Each feels that the way they lost their loved one is worse. Each has good arguments in their favor. But the most persuasive argument against my view came from my own wife.

Last week, she told me that she's been experiencing grief for a long time. By the time I die, she will have been going through the grieving process for something like two and a half years. Then, after I die, she'll go through the same grieving process she would have had if I'd died in a car accident. She recognizes that there are advantages to knowing in advance, but there is a huge downside too. Two more years of grief than she would have had otherwise. It's amazing that she doesn't show it more than she does.

I know this is true of many who are close to me. Most have been preparing for this for at least a year, since I was diagnosed Stage 4 in September of 2016. A very few have known from the beginning that this was coming. Or at least, very few have wanted to admit it. It's easy to understand why. As my dear friend Nikki once said, "We don't want to live in a world without Mark." It was one of the nicest things anyone's ever said to me.

But I always knew. As soon as I found out how serious and aggressive my disease is, I knew how this would end. I felt soon after I was diagnosed that I had about two years. I don't know how I knew that. I just did. That feeling never changed, even when things were going very well. Close friends know this to be true. If my oncologist's estimate is correct, I will have been off by about six months. It will have been approximately two and a half years from diagnosis to death.

This is why I listen to my heart. It's usually pretty accurate. And speaking of accurate, when I asked my oncologist for a prognosis a year ago, he said if I respond well to treatment, I could live three to five years. If not, a year or two. I tell that story in Life Expectancy, written September 16th, 2016. I did not respond well to treatment, or at least not for very long. If I'm looking at four or five months from today as my sell-by date, it will have been roughly a year and a half since he gave me that prognosis. Pretty accurate.

When I wrote that post, I was chastised by many for believing him, as though disbelieving him would help me live longer. But I knew he was right.

Even so, for most of the time since I was diagnosed, I haven't felt like I was dying. I felt pretty much normal. I still do, for the most part. Physically, at least. When I visited my family last February, one of my sisters asked if I felt like I was dying. I said no without hesitation. I knew that I would die, but I didn't feel like I was dying. But in recent weeks, that has changed.

Since sometime in August, I've had this feeling that I've only told a few people about. I can feel that I'm dying. It's nothing physical. It's more in my heart and spirit. What does it feel like? It feels like certainty. It feels like a slow decay has begun. It feels right that I am in hospice care now. It feels like God is looking at his watch, wondering when I'm gonna show up. Typical singer, always late.

But at the same time, I am in great spirits. I love what I'm doing, mentoring and writing. I'm having lots of fun. My days are not spent waiting for death. In fact, my friends have had to get used to my dead guy jokes. You have to have a sense of humor about this. If you don't, you really are just waiting to die.

The band I'm in is about to get band pictures taken. But I won't allow myself to be in the picture, because as I told them, you don't want a dead guy in your band poster. That was a real knee slapper. We're performing at an annual event here in Denver called Prog Fest on October 29th. We're closing with two songs from Pink Floyd's Dark Side Of The Moon; Time and The Great Gig In The Sky. Yes, we have a girl singer who can sing The Great Gig In The Sky. It will give you chills.

There is a speaking part in that song that I've never paid any attention to. I can't understand what he's saying, and I've never bothered to find out, even though I've owned that album since it came out in 1973, and I've listened to it hundreds of times. But since I'm not doing anything at that point in the song, and I'm the best actor in the band, I volunteered to do it. Then I saw what the words were.

I've performed at Prog Fest many times. My first performance at that event was in 2006, when a group of us did another Pink Floyd piece, Shine On You Crazy Diamond. You can find the video on my YouTube channel here. So it's fitting that my final Prog Fest performance is another Pink Floyd song. They've always been one of my favorite bands. When The Great Gig In The Sky begins, and my speaking part comes, these are the lines I'll be delivering, verbatim from the album. My parting words to the Prog Fest crowd who has seen me perform so many times.

And I am not frightened of dying
Any time will do, I don't mind
Why should I be frightened of dying?
There's no reason for it, you've gotta go sometime

I never said I was frightened of dying

I'm sorry, but that's spooky. It was my idea to do that song, but only because I wanted to hear our singer sing it. I had no idea what I'd be saying in a speaking part I didn't even know I'd be doing. How bizarre is that? And how in character with the way my journey has gone from the beginning. One serendipitous event after another.

This is why, for me, it's better to know. If I didn't know that this is my last Prog Fest, the significance of those words would be lost on me. The significance of my last public performance would be lost on me. I'd miss how precious time is.

But at the same time, I understand that you may not feel the same way. For you, it may have been months or years of grief, and we're not even to the bad part yet. I am sorry for your grief. Allow me to be the first to say that I'm sorry for your loss. Thank you for sticking with me even though it hurts, and the hurt will get worse. And the more you love me, the worse it it will be when you have to live in A World Without Mark.

Whether you think it's better to know or not, we all get off at the same exit ramp. We all know it's coming, we just like to pretend it's not. You might think my expected death is terrible, but an unexpected one can happen at any time for any one of you. So don't wait until you know you're dying to tell the people close to you how you feel about them. Don't wait to get your ducks in a row. Then you won't have to worry about whether it's better to know, or not to know. #waroncancer #bearingwitness


Wednesday, September 27, 2017

Welcome To Hospice


Day 1 of hospice care. No symptoms.

We met with a nurse from Denver Hospice today. This should have happened earlier, but somehow the referral from my oncologist's office had been faxed to the wrong number. Faxes in 2017? The 1980s called. They want their technology back. Anyway, once the referral went through, Hospice called almost immediately. This is a very good sign, but it makes me glad there was this delay. I would not have been ready to meet a new team a week ago. I was still mourning the loss of my oncology team. Prematurely, as it turns out.

I was surprised that they could schedule us so soon. When the call came yesterday afternoon, they were able to send someone this morning. We were told to expect calls from members of my new team over the next few days. All of this shows why my oncologist referred me to them. They respond very quickly.

The lady who came to our house today was named Paula. She was the admitting nurse, and said we wouldn't see her again after today. Her only purpose with us was to admit us for hospice care, and explain the services that are available to us. She gave me the book pictured above.

I haven't read through the book yet, but Paula directed me to the page that talks about what to expect in the first two days. An appointment will be made with my new hospice nurse, and a "comfort kit" will be delivered, containing medications often needed by dying patients. Including morphine. I hope I never need it, but I probably will at some point. It will be very strange receiving that package tomorrow, when I expect to still feel fine.

Given my experience with medical offices, I'm surprised that things are moving this quickly. Paula said that my oncologist refers many patients to them, and I'm starting to understand why.

Paula said Denver Hospice is known for their ability to manage pain. I explained that my priority is remaining lucid so I can write, drive, and interact with people. She assured me that this is possible. They do it all the time. She told me they have over six hundred patients in Denver right now, and all but a few are at home. That's exactly what I wanted to hear. But she also said something I wanted to hear even more.

She called my oncologist's office to ask if he could be my doctor in hospice care. He agreed, which means I can keep going to his office and see my team as more than a visitor. This makes me happier than I can describe. There has been a throbbing ball of sadness in my heart since the day I said goodbye to them. I was fine for the last few days, as long as I didn't think about it. Then Prostate Cancer Foundation reprinted my blog post about them, The Hardest Part, and it brought it all back. But now that I know I can go back at least a few more times as a patient, that ball of sadness is gone. I feel much better about things now, knowing I don't have to make such a clean break with them.

Paula had me sign several forms, including one that's very important to me. A Do Not Resuscitate form. If I die, let me die. Don't crush my ribs in a vain effort to bring me back. No CPR. Quality of life over quantity.

I know this is hard for you to read. It was hard for me to write. There is a sudden finality to things now that this step has been taken. But all it does is motivate me to keep doing what I can while I can. I still feel fine, and as long as that's true, I'll keep going. I'll probably keep going when it isn't true too. Cancer will stop me one day, but not today.

But make no mistake, a page has turned. The time for treating the cancer is over, and the time for keeping the patient comfortable has come. Please honor my request to stop suggesting treatments. Anyone who does will only show that they didn't read this, or they don't care how I feel, or both.

A friend said to me that no one tells us how to die well. It's a subject that nobody wants to talk about. Well, I'm gonna talk about it. We all must die, and I hope to die well, and by documenting the process, show others how to do so.

I'll post again when I know more, which should be soon. I expected this initial visit from Hospice to go well, and it went better than expected. I'm excited to meet my new team, especially since I don't have to give my old one up so soon. And I'm looking forward to having lots to write about.

Time is of the essence more than ever before. I'm calling the family in. If we are close, I'm calling on you. Sharon and I need you. Your friend is now in Hospice care, and your presence is requested. Be there or be square.

I've never been afraid of dying. I've been able to see this coming for two years now. I regret running out of time, and I naturally want to minimize suffering, but I don't fear death. In fact, I don't fear anything. I am beyond fear. When Eternity is this close, there is no place for fear, only love and freedom. I am free because of love, and there is no fear in love. Perfect love casts out fear. (1 John 4:18)

And so it begins. The third and final phase of my cancer journey. The first phase I call diagnosis, the second Stage 4, the third is Hospice. Each phase has taught me much, and I expect to keep learning until the day when the ultimate aha moment comes. #waroncancer #bearingwitness

Thursday, September 21, 2017

What Faith Is


When you have cancer, especially the terminal kind, people tell you to have faith. They tell you to believe in miracles. They tell you to trust God. Well, now I'm doing that, literally. I'm trusting God with everything, including my life. And despite what the odds are, I believe that if God wants me here, I will be here. If he wants me active and at work doing what I love, he will enable me to do it. Cancer can't stop that.

But if he allows me to deteriorate over the next few months and takes me home even earlier than predicted, does that mean my trust was misplaced? Was my faith in vain? Not on your life. My faith is not in a desired outcome. It's in God himself.

I've been waiting to write this post for a long time. My faith has been a hallmark of this blog. It has sustained me through this trial. I've come to some conclusions about what faith is, and what it isn't. All of my conclusions are based on what I believe the Bible teaches, and I've studied this subject intensively for years. But this isn't a debate. It's not theology class. It's real life and death stuff.

I wrote extensively on the subject of divine healing in a pivotal early post titled My Complicated History With Divine Healing. I won't repeat what I said there. Much. But these two posts are related, and they show that this issue has been with me from the beginning, and it's still an issue. Just as there are those who, even at this stage, try to tell me a treatment or diet or supplement will cure me, there are still those who say that if I have enough faith, God will heal me.

But even Christians have different ideas of what faith is. That's why I've wanted to write this post. For two years, some fellow believers have tried to tell me that not only can God heal me, he will, because certain verses in the Bible seem to say that. I just have to have enough faith. But I do have faith. I just don't think faith is believing that a certain thing I prayed for will happen. Faith is being willing to trust, and act on that trust.

I'll never convince those who are already convinced. All I can do is tell you my experience, and what God has shown me.

In church last Sunday, the pastor asked a young girl if she would trust him to catch her if she jumped from the platform into his arms. She said no, but she trusted the tall, strong youth pastor. He told her to jump, she jumped, and the youth pastor caught her. The pastor (who she didn't trust to catch her) asked her, "If you had said you trusted him to catch you, but wouldn't jump, did you really trust him?" The girl said no. She was right. That's what faith is. It's being willing to jump when God says jump, no matter how it looks.

The two most used verses to support what I regard as the "transactional" version of faith are Mark 11:22-24, (and their corresponding verses in Matthew 21, where the same story is told) and Matthew 17:19-20. In both passages, Jesus tells his disciples that if they have enough faith, they will receive anything they ask for. The problem is, we don't get whatever we ask for from God, no matter how much faith we have. Thousands of people have been praying for my healing for two years now. They can't all have no faith. I was anointed in a Pentecostal church recently, and all there seemed convinced I had been healed. But here I am, waiting for a call from Hospice.

This means one of two things. It either means those passages just aren't true, or it means they don't mean what some think they mean. I choose to believe the latter. All of the biblical scholarship I've read on both of those passages holds that Jesus was talking to his Apostles here in private conversations. Matthew clearly states in the above passage that the disciples came to him privately. (v19) He wasn't talking to us. He was conferring power on his Apostles so they could establish his church. So these verses are true, they're just not intended for anyone but Apostles. If you've personally witnessed the resurrection of Christ, (which is the definition of an Apostle) maybe it's for you. Otherwise, you probably don't have that kind of authority.

Keep in mind that even Jesus had to say, "Not my will, but yours be done" in Gethsemane. If even he could not claim what he asked for, what makes us think we can?

But those aren't the only passages in the Bible about faith. For every verse like those, there are at least a hundred where faith was shown by people who trusted God enough to do whatever he asked, no matter the consequences to themselves. The best example of that, to me, is the eleventh chapter of the book of Hebrews. The famous "faith chapter." This is the only place in the Bible where a definition of faith is given. Many think that definition is the first verse, but really, it's the whole chapter.

Most of that chapter consists of examples of obedience. God told somebody to do something, and they did it. Most of the time, what they were asked to do seemed impossible. But they trusted God enough to do it anyway.

I prefer that kind of faith to the kind that says, "I asked in faith, so you have to give me what I want." I think it's the most biblical. And it certainly fits better with my experience, and that of most people. My faith in God is unshakeable. I talk incessantly in this blog about how real God is to me. The reality of God is right in my face all the time now. I have no doubt whatsoever about God's power, or his goodness, or his love for me. I know nothing is too hard for him. So if I am not healed, it doesn't mean I don't have faith. It means God has shown his hand.

This is my favorite passage from Hebrews 11:
13All these people were still living by faith when they died. They did not receive the things promised; they only saw them and welcomed them from a distance. And they admitted that they were aliens and strangers on earth. 14People who say such things show that they are looking for a country of their own. 15If they had been thinking of the country they had left, they would have had opportunity to return. 16Instead, they were longing for a better country—a heavenly one. Therefore God is not ashamed to be called their God, for he has prepared a city for them.

I am living by faith in a more literal way than I ever have before. Some may feel that I've not been given what was promised. And I'm definitely an alien on earth, but God has prepared a city for me.

As I've said from the beginning, I am open for whatever God chooses to do. I have so much faith in God that I'm willing to let him do whatever he wants with me. Because my faith is in him, not in my own prayers. Faith is not believing that I can tell God what to do. It's being willing to do whatever he tells me to do. #waroncancer #bearingwitness