My New Normal

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

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

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

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

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

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

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

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

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

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

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

The Withering

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The End Of Cravings

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

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

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

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

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

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

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

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

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

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

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

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

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

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