Thursday, December 7, 2017

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


  1. Thank you, Mark, as always. I know our Savior holds you in his heart and holds a place of joy for you when the time comes. A few years ago, we lost a friend to liver cancer, and he, too, knew when his time was short. Yet, like you, he was the one lifting others' spirits with a smile or a laugh. He spent his last few months having a home built for his large family and writing a book of his life and his testimony for those left behind. Your music and this blog speak of you and of Christ. God bless you and yours!

  2. My prayers are with you. I truly admire your drive. You are an inspiration to all of us. I am really in just the beginning of this journey, as I was diagnosed in July 2015, had surgery Jan 2016 with follow on radiation because it had left the prostate. Since then, my PSA has continued to drop to near the "undetectable" stage, but is not there yet. I fully realize from seeing what others went through, that I will never be able to consider myself as cured, and that at any time, I might find myself in the position where I will have to face what you are going through. Your sharing your experiences I think gives me strength to face the future no matter what it brings, and make the best of every day. May God Bless us all!

  3. Oh Mark!! This breaks my heart. I really hope the nausea will subside. I wonder if phenergan might help with the it at all? The only downside is that it can make you feel sleepy. Steroids have always made me feel very nauseous and make me crave sweets, but everyone's differnt. Sending you love from Kansas.xoxoxo

  4. God bless you Mark. I for one, find your postings truly inspirational. One day, I may find myself looking down the same path your living right now and only hope, I can live it as well as you are. Thank you for you honest and frank representation of this path.

  5. I'm praying God will allow you to do your heart's desire. I understand how important these are to you! Blessings during the Christmas season. Love you!

  6. I found your blog through a trail beginning with Bethlehemian Rahpsody (which I love) and heard for the 1st time the other day.The original version came to mind this morning, especially that part..."sometimes I wish I'd never been born at all" I won't expound there but I thought of Bethlehemian Rahpsody and brought it up on my phone to listen to. When I got to work this morning I listened to the messages you shared at your church in CO...very precious and touching, thank you. I loved the way you worded what you did...let it go...instead of "change" your old ways, attitudes etc....let them makes it simpler and clear. I wanted to let you know that your story and message of freedom have touched my heart. Thank you brother Mark. I spent some time today praying for you and your precious wife. Much love to you both. A Sis in Christ in Indianapolis <3

  7. Hi Mark. I am sitting in the infusion center getting my chemo. My friends here (the staff) and I have fun. Yesterday I was told that my 'saunter' looked good as I slowly walked by. Now we are all having fun with different names for what is truly just walking slowly. Fatigue is no fun... but having fun with the fatigue is still possible. Let's take a saunter soon.