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

Living Versus Waiting To Die

It's been a while since I've told you how I'm doing. After two weeks in Heaven, it's time to come back down to earth. Time may not pass in Heaven, but it's passing all too quickly here. I still have much to do, and despite minor difficulties, I'm striving to do it all. I want to finish well.

My symptoms are manageable. I still only have the original three; nausea, balance issues, and pronounced fatigue, or what I call "that run-down feeling." I'm still in no pain. My weight is good. I'm controlling the nausea with medication. It tends to be worst at night and first thing in the morning. Once I have it under control in the morning, I'm usually fine the rest of the day. If only my other two symptoms were as easy to treat.

Before I get off of the subject of nausea, let me answer a frequently asked question. Yes, I still can't have coffee. The thought of one sip makes me nauseous. It's brutal. It's like being pregnant. The thing I loved so much now makes me nauseous. But as I've said before, I know that one day I'll wish my worst problem was not being able to have coffee.

I deal with my balance problems by making sure I can hold onto a handrail when taking the stairs, (and I do still take the stairs) being careful to stand up slowly, and making sure I always have a place to sit down quickly if needed. There doesn't appear to be a prescription for that. So I just have to be careful. My balance is better when I have more energy, and I tend to have more of those "sit down quick" moments when I'm running low on energy. Which leads me to my main battle at this point.

Without artificial help, my energy level is not good at all. So I've been trying different dosing levels of the steroid Hospice prescribed, which we call Dex for short. I reported on my first try with that in The Marathon. I took a whole pill, and that was far too much for my system. I had great energy, but could not sleep. I also had one of my dizzy episodes after taking it, though I don't know if the two were related. I tried a half pill a few days later, and still could not sleep that night. Finally, I tried a quarter pill. It worked, but I can't do that every day. If I do, I can't sleep by the third or fourth night. So, on the advice of my hospice nurse, I'm taking a quarter pill every other day to see if that will give me the energy I need and still allow me to sleep. The jury is still out on that.

But my sleep has been much better lately for one reason. I got a new batch of cannabis oil from my caregiver. I had stopped taking the cannabis oil suppositories I've talked so much about (see Tiny Popsicles and Tiny Popsicles Part Two: The Experiment) because I thought the latest batch of oil I got was keeping me from sleeping instead of helping me sleep. My caregiver made me a new batch that's 50% CBD, and that's been helping me sleep much better.

When I was off the oil, I would typically have at least a sleepless hour, if not two or more each night. But since I started taking the oil again, I'm sleeping like a baby again. That will only help my energy level. I'm very much hoping that the combination of the oil and the low, every-other-day dosing level of Dex will do the trick, both energy-wise and sleep-wise. And I need all the energy and sleep I can get, because I'm not just waiting to die. I'm living.

Progress on my book, Bearing Witness, is a bit slow at the moment, but will pick up again soon. Once I've caught up to the present in the template for print, I'll begin formatting it for Kindle and iBooks.

I'm also busy at work planning my memorial service. I've held one rehearsal for it - which spun a few heads on Facebook - and I expect to meet someone else to run through another of the songs soon. There are two versions of the service order, depending on who is available to sing. The slideshow and a video retrospective of my song parody career are in the can. Soon, I'll write the program for the service, complete with introductions of every person who will participate; Who they are, and who they are to me.

But the main thing on my plate right now is the winter show for The Littleton Conservatory Of Rock on January 28th. I'm the vocal and performance coach there, in case you're new here. Rehearsals started for that three weeks ago. We rehearse on Saturdays from 10:00 AM to 5:00 PM. As you can imagine, with my energy issues, these rehearsals are very taxing. I tend to have at least one of those "have to sit down quick" moments in the afternoons there, just from fatigue. My balance is worse when I'm tired.

I've had a couple of those in front of the singers I coach. My friend Todd has seen them too, but I don't know if anyone else has. One of these days, I'm afraid something will happen that everyone will see. But none of that keeps me away. I love being there with them. It drives me. It gives me something to shoot for; being able to take the stage a few times at the end of January with these people who mean so much to me. So don't tell me to stop. I won't. If I stop doing what I love, I might as well lay down and die.

The next rehearsal is tomorrow. It's the start of another marathon weekend. First, an all-day rehearsal, then that night, Sharon and I host a Christmas party that we've hosted at our house for many years. The Colorado Art Rock Society holiday party. Others have volunteered to host, but it's my last one, so we're doing it here. That usually goes till about 10:30 PM. Way past my bedtime.

Then, I have to stay up to get the house ready for a band meeting at our house the next morning at 9:00 AM. It's the only time the band I'm involved in, Wik, could meet this week, and it's been a month since we played Prog Fest. I wasn't willing to let it go any longer. And there's no other group of people I'd agree to meet at that time after a day like Saturday. Especially since I will have seen most of them at Conservatory rehearsal the day before. But this band is important to me. So I'm going ahead with it, and looking forward to it very much.

In order to do this, I'll have to take more than my usual dose of the steroid Dex. Which means I'm basically committing to not sleeping Saturday night. If I get a few hours, great. But I'm not counting on it. It's OK, though. I'll be able to take the rest of Sunday and all of Monday to recover. I only hope I don't have another episode like the one I described in The Marathon from pushing myself too hard. I'd hate to call off the band meeting because I had to go to the Emergency Room.

I could tell Todd I can't make it to rehearsal tomorrow, and stay home and rest up for the party. But then I wouldn't get to see those kids. I could have told someone who volunteered to host the party that I needed them to do that. But then I'd miss out on an important Christmas tradition for us. I could have said no way to a band meeting on Sunday morning. But I didn't, and I won't. I miss meeting as a band with them. I know that one day soon, I won't be able to leave this house. So as long as I'm able, I'm gonna keep going places and doing stuff.

It's such a blessing to be able to finish well. One of the benefits of cancer is it gives you time to do that. The absence of pain is the miracle that allows me to do all of this. More than a year ago, I felt a distinct sense from God that he was giving me this time without pain to get some things done. To allow me to finish well. My heart is filled with gratitude for that.

The night before Thanksgiving, I wrote a Facebook post about what I'm thankful for. Here's one of the examples I gave:

I’m thankful to have a sense of purpose that drives me, even in hospice care. Because of this, I am living, not just waiting to die.

Yes, I am in hospice care. Yes, I am dying. But I won't let that keep me from living. I am driven by a sense of purpose. Because of this, I am living, not just waiting to die. Now please excuse me. I have some living to do. #waroncancer #bearingwitness