Thursday, June 29, 2017

The Path Forward


My consultation with my oncologist didn't go quite as expected, in both good ways and bad. I thought it would go something like this:

Doc: Well, Mark, your bone scan lit up like a Christmas tree, so we have to do chemo now.
Me: Sorry, Doc, I'm not gonna do that. Got anything else?
Doc: Well, there's that Radium stuff that makes your pee glow in the dark, and a clinical trial that could help your cancer or make you grow two heads, but that's about it.
Me: I appreciate all you've done, Doc, but I think I'll call it a day.

Or something like that. I don't mean to copy Dan Cole's writing style. Much. Here's what really happened.

The bone scan didn't exactly light up like a Christmas tree, but it is significantly brighter than the last one. Here it is, in all of its glory.


The one on the left is the one from last September. The one on the right is from three days ago. There is a visible difference. But according to the radiologist's report, the bone scan didn't reveal any new mets. It's that the existing ones have grown and "intensified." Whatever that means.

It was the CT scan that showed new metastasis where none had been found before, on the interior of my pelvis and sacrum. It's a 3D image, so I can't post it. But my oncologist scrolled through it with me and showed me all of the spots. They're there, all right, and they look pretty prominent to me.

Here's the good news. I still can't feel any of them. The only pain I have is from a place where no cancer was found, my left upper arm bone. That means I can get a steroid shot to try to fix it. I have to go to my Primary Care doctor for that, though, or get a referral from him to a place that does that. Maybe a sports medicine doctor or something. So that's really good news. Unfortunately, Melanie doesn't have those in her arsenal.

Speaking of Melanie, I happened to see her while I was there. I told her that my last Xgeva shot hurt for a week and a half. She asked who did it, and I said "the one with the European accent." She and the MA who were in the room both laughed and said no wonder. The MA said "she's the mean one." Good to know. I won't be getting any more shots from her.

My oncologist wants me to do chemo. He thinks it would be most effective, being an aggressive treatment for an aggressive cancer. There's also the radium IV treatment, Xofigo, but he feels it might be dangerous to try that before chemo. He said it would do something to my blood cell count, I don't remember what. It would compromise my ability to tolerate chemo. He thinks chemo should be first, then maybe we can try Xofigo if needed.

This scenario did not thrill me, as you can well imagine. I asked him, given my history with treatment, how fast I burned through Lupron and Xtandi, would I be likely to have long lasting results with Taxotere, the chemo drug he wants to start me on? He admitted that, while I could get good results from chemo, I might not have them for very long. And in the meantime, I'd feel like crap, and look like Chemo Man. Gaunt Cancer Guy would be in the house.

I told him that, in the past year, three guys I know personally underwent chemo. Two of them died, and the other regrets it. He understood how a personal experience like that would weigh heavily on my thinking about this issue.

I told him there was no way I was doing either of those treatments until August at the earliest, if then. Not until after our 40th anniversary party and the kids' summer show the first weekend of August. At least. He said that was no problem. We're not in a big hurry. In the meantime, he'll set up a consultation for me at the local university hospital regarding clinical trials I might be a candidate for. I expect a call from them next week.

Also in the meantime, I told him about an alternative treatment I wanted to take another run at, since we have at least a month until I'm willing to consider what he has to offer. I explained how my PSA began to rise when I started ramping down my dosage of the cannabis oil suppositories I'd been taking. I told him I want to go back to full dose suppositories for a month, and then test again to see if it helps. He agreed that would be a good idea. There are no other variables, since I'm off Xtandi now, and no other factors would push my PSA down in the next 30 days. So that's what we're going to do. What a blessing to have an oncologist who would agree to do that so readily. He's curious when so many doctors are dismissive.

A good friend of mine was recently put on a hormone therapy drug, and wasn't give the option of Xtandi. He was simply put on Zytiga with prednisone because it was his oncologist's choice for him. I'm upset about this for my friend's sake, and at the same time, very thankful for my oncologist. He has never once pushed a treatment on me, or failed to give me all of the options he had available. He always explains each of my options with all of their pros and cons, and lets me decide. I told him today how much I appreciate that. It shocks me that all doctors don't behave that way.

So that's the plan for now. Full dose suppositories (what my friends Christopher and Lori call "butt rockets") for a month, then test my PSA again to see if it's helped. Consult with experts at University Hospital about clinical trials. If neither of those pan out, see if I can withstand my doctor's full court press for chemo. I think I can, though I've never been able to dribble a basketball.

As you know if you read my last post, I really wanted to title this post The Decision. It sounded dramatic. Instead, there are more things to try and more decisions to make. But realistically, this is the way things will go from now on. We may be able to push my PSA back down for a while with one treatment or another, but nothing will kill this beast. Each set of scans will be worse than the last, no matter what we do. Which, for me, makes the ultimate decision easy. It's just a matter of when to pull the trigger.

Don't worry, I'm not pulling it yet. But my hands are getting shaky, like Barney Fife once they allowed him to have a gun with a bullet in it.

I'm sorry if this news upsets you. I promise you that I'm doing fine right now. So is my wife. This was always the way this was going to go. I actually feel very blessed. To be at this stage, still with no symptoms is incredible. To me, it means that what I felt God showed me months ago is still true. He's giving me this time without pain to get some things done. Some last assignments. I've already crossed a few of those off the list. I only have two or three left that I know about right now. One is my book. Another I can't talk about publicly yet. The third is helping my wife prepare for a future without me.

This is why I feel like I can refuse treatments if it comes to that. If God has something for me to do, I believe he'll keep me here, and enable me to do it. Cancer can't stop that. When he's ready to take me home, I'm ready to go. Until then, I'll keep bearing witness to what this disease does, and how Love has made the difference for me. #waroncancer #bearingwitness

Monday, June 26, 2017

A Day Of Scans


I had my CT scan and bone scan today. Days like this always wipe me out. I think it's because of the chemicals they fill me up with. But before we get to that pleasant topic, I want to say a word about my last post.

My last three posts have all had an amazing response, and I'm so grateful for all of your support. When I posted No Good Options, where I told about my oncologist's conclusions that hormone treatment has ceased to be effective for me, and how I wasn't crazy about the options I have left, I figured that post would get a lot of views. It's a "hard news" post.

I tend to categorize my posts into two groups; Hard News and Navel Gazing. The hard news posts always get a lot of traffic, and the navel gazing posts don't get as much, which tells me that more people are interested in what's happening with me than are interested in my thoughts on What It All Means. That's okay. I feel blessed that so many of you are interested in what I have to say about anything. And I feel doubly blessed that so many more are concerned about what happens to me.

Which made your response to The Storm all the more surprising. I almost didn't post it. I didn't think it was that good. But I didn't want to wait until now to post again. I had this emotional episode at the beach, and felt moved to write about it. But it seemed like a "filler" post to me. Definitely a navel gazer. Instead, it's now my all-time most viewed post, passing The Suggestion Box by more than 300 views. I honestly don't get it. But I'm extremely humbled and grateful for your response.

But back to our regularly scheduled program. I've had a CT and bone scan on the same day before, so I knew what to expect. I wasn't looking forward to it. The scans themselves are no big deal for me, it's what they make you drink and what they pump you full of that throw me for a loop. First, they put in an IV, which I wore until the CT scan was finished. The tech who attached the IV to my arm ended up being the one who did the bone scan. She injected me with radioactive iodine for it, which did not turn me into The Incredible Hulk. I felt more like Olive Oyl when she gets all rubbery and fainty.

That stuff takes hours to work its way through your system, so they got me in for my CT scan while I waited. They had told me I couldn't eat or drink anything for four hours prior to the CT scan, but once I was there, they were OK with the fact that I'd had breakfast just less than three hours earlier. If you think radioactive iodine is a treat, just wait till you try contrast for a CT scan. There are two kinds, the kind you have to drink, and the kind they use the IV for. The kind you drink is to add contrast to your gut and abdominal area, and the kind they pump into the IV is for your bloodstream. Both are horrible.

The contrast you drink tastes like Satan decided to make Kaopectate worse. If you thought you were hungry because they told you not to eat, after you drink that stuff, your appetite magically disappears. They gave me some time to let it seep into my gut, then a guy came for me. He was the tech who performed the scan.

I find it interesting that the techs for both scans leave the room while the scan is actually going on. It's much too dangerous and toxic for them to stay. Hey, wait a minute...

The purpose of the CT scan was to find out if my cancer had spread to any organs other than bone. The machine looked just like the one in the picture above. The tech had me lie down on my back with my feet facing the big donut, propping my knees up under a cushion. He wanted me to raise my arms over my head, but the pain in my left shoulder, which keeps getting worse, kept me from doing that. So he let me keep my left arm at my side. It can't be a good sign when you can't raise your arm for a CT scan because the bones in your shoulder hurt too much.

It's a good thing the IV was in my right arm. I had to raise that for extended periods while he pumped the intravenous contrast into my bloodstream. That stuff made me smell and taste weird things, and gave me hot flashes unlike any I've had from Lupron. The kind that make you feel like you might pass out. I never came close to passing out today, but I did have some hot flashes that left me light headed. Not just during the scan, but after.

Monday is a rehearsal day for the rock band school's summer show this time of year. I wanted to try to be there for at least part of it today, especially since the place where we rehearse isn't far from the hospital. Originally, I was supposed to have a longer break between getting the IV and the radioactive iodine and coming back for drinking contrast and getting both scans. But things got moved around, so I only ended up having a break of an hour and fifteen minutes. That still gave me time to get down there for about 45 minutes of rehearsal.

I showed up there, still wearing my hospital bracelet, shortly after noon. I had to leave at 1:00 PM. But at least I got to sing through some songs with one of the singers, a girl named Alessia. My friend Todd joked with her that if I should fall over she should try to catch me. She almost had to. At one point, one of those weird, overpowering hot flashes came over me. My forehead started to sweat, my T-shirt clung to my skinny frame, and I felt all woozy. I told her the chemicals for the scans were really doing a number on me. I don't think anyone else saw it, but Alessia can testify.

After too short a time, I left my friends and headed back to the hospital for my bone scan. If schlepping down there and back between cancer scans to only be with them for 45 minutes doesn't show my love for those kids, I'm not sure what does.

The bone scan tech was waiting for me when I returned. I liked this lady a lot. She reminded me of my nurse Melanie. She even offered me a warm blanket in case I got cold. The purpose of the bone scan was to show whether the cancer on my bones has progressed. I think I can answer that question without a scan, but we'll wait for the radiologist's report.

Bone scans can be difficult if you're claustrophobic, but thank goodness, I'm not. As she covered me with the heated blanket, at first, I was very comfortable. I felt like taking a nap. But guess what the warm blanket triggered? Another woozy hot flash, of course. But it passed, as did everything today.

I requested a copy of my bone scan image, as I did last time. In my next post, I'll include a side-by-side "before and after" of my previous bone scan with this one. I'll even put it on Instagram. But it will get zero likes. Nobody likes my bone scans.

Here's the good news that I know so far. I got a call from my oncologist's office on the way home, and was told the CT scan shows no metastasis in any organs other than bone. That's a very good thing. Now we wait for the results of the bone scan. Radiologists operate on a different schedule than the rest of us.

When I got home, my wife and dog greeted me at the door. It was a gorgeous day in Denver today, so we sat on our patio and I told her about my day. We ate a nice dinner out there, and embraced for a good long while. It's good to be home after a day like this.

I see my oncologist on Thursday afternoon, and I'll post about it Thursday night. I think the title will be The Decision. But before that, I have some life to live. Two more rehearsal days with Todd and the kids. A concert with my wife tomorrow night, and another reservoir day. Cancer can wait. I have stuff to do.

So I guess this was more of a hard news post than a navel gazing post. God didn't even make an appearance. But love did, and I think that makes him smile. #waroncancer #bearingwitness

Friday, June 23, 2017

The Storm


It hit me for the first time yesterday. The reality of how little time I may have should my wife and I make the decision I expect us to make soon. I knew it intellectually, but hadn't felt it emotionally since my consultation with my oncologist on Tuesday. I was the one assuring all of my friends that I'm okay. And until yesterday, I was. Until the storm hit.

Until yesterday, my spirits were high. I was consoling friends, telling them how sorry I am to see how my news affects them. One of our friends asked a couple of times how my wife and I are doing, and I assured her we're fine. That night, my wife and I were having frank discussions about the future, and neither of us were crying or sad. It was very matter-of-fact. I told her about our friend's question, and she said she'll be fine "until the crap show starts." Well, it didn't officially start yesterday, but I think they're gonna start the previews soon.

I've been very busy, what with tearing my recording studio down and preparing to sell my gear, medical appointments, (which will continue) starting the summer concert season with the rock band school, and another musical project I can't talk about yet. So my wife and I haven't had as much time lately as we'd like to just be together and have a fun retirement.

But yesterday was carved out to do something both of us really enjoy; spending the day in our favorite spot at a local state park and reservoir. We take a picnic lunch and set up on the beach there with our dog. We usually stay five or six hours, until mid-afternoon, when here in Denver, Colorado, the weather tends to roll in. It makes for a fun, relaxing day. Just the kind of thing you picture yourself doing when you're retired. Taking it easy.

For the first couple of hours, it was great. The weather was nice, the water was peaceful, and we pretty much had that part of the beach to ourselves. But we could see rain clouds coming towards us from the west. Our reservoir day might be cut short.

The weather hit much earlier than normal, around 12:30 PM. It got windy and grew darker. It's been very hot here lately, so I was dressed for hot weather, not for this. We tried covering up with a blanket and riding it out, hoping it would blow over. Our poor dog was huddled under our chairs, trembling with fear. She doesn't do well with bad weather, especially thunder, which rumbled in the distance.

The worse the weather got, the worse my mood got. I became morose, and began crying. It seemed like a metaphor to me. We're trying to enjoy our lives, but the storm always seems to sweep over us, ruining our plans.

In the end, it wasn't really much of a storm. Hardly what you'd call a deluge. Just a little squall. But it was enough to shatter my unnatural upbeatness over the past few days.

The seriousness of the decision we must make is ever before me. I'd say it's already been made, and it pretty much has been made, but a lot can happen in the next two months. If you've been following along, you probably know what that decision will be.

I feel better this morning. The storm passed, and so did my dark mood. On Monday, I'll get a new bone scan and CT scan. The purpose of the bone scan is to see if the cancer has spread farther on my bones, and the CT scan is to see if it's spread anywhere else. I wonder how I'll take it if my skeleton lights up like a Christmas tree, as my oncologist expects it to. I'm sure I'll be fine at first, maybe my head will be spinning a little, but emotionally, I'll be fine. And then some random event will bring it home to me.

I keep seeing that "I am the storm" meme, but that's not how I feel. In the face of this deranged cancer, I feel much more like my dog, trembling with fear under a chair when the wind blows, the rain falls, and the thunder rumbles. At least that's how I felt yesterday.

I know that I could defy all odds, even if I decide to refuse treatment. God could decide to keep me around for a long time. But that's not what's likely to happen. I have yet to defy the odds so far.

Time is of the essence. I need to be mindful of how I spend my time from now on. If I want to spend my time with you, it's the highest compliment I can give. Time is the most precious thing I have. Because the storm is coming. And the crap show is coming soon to a blog near you. #waroncancer #bearingwitness

Tuesday, June 20, 2017

No Good Options


My consultation with my oncologist today was very informative, and I got the answers I was expecting. Just not the ones I was hoping for.

It seems I'm at the end of the road when it comes to hormone treatment. It's no longer effective for me. The pharmacy that sends Xtandi to me called yesterday to ask if they should send the next bottle. I still have more than a bottle left now, and my oncologist doesn't think there's any point in ordering any more. When they call back, I'll tell them no for the first time.

I seem to be in a small subset of prostate cancer patients whose cancer is particularly resistant to hormone treatment. That's why I got so little time out of Lupron and Xtandi. I also learned that my cancer does not produce much PSA. So while many guys in my condition have much higher numbers, in my case, even a number as low as .98 warrants new scans; both a bone scan and a CT scan. We'll do both of those early next week. Even with my PSA as low as it is, my doctor expects to find further progression of the disease.

Assuming all of that is true, what are our options? In terms of what's offered at the facility where I get my care, there are only two. The first is a drug called Xofigo. Yet another cancer drug that starts with X and sounds like a Star Trek character. Technically, its a chemo drug, but it's a radioactive isotope that's delivered once a month intravenously. I'd have to go down to the Radiation Oncology office to have that done. Side effects are supposed to be milder than chemo, but it only acts on the bones. If no metastasis is found in any other organs besides my bones, that may be an option. But it's not a very attractive one to me.

The most common side effects for Xofigo are nausea, vomiting, and diarrhea. Not only not fun, but dangerous to my ability to keep weight on. Gaunt Cancer Guy would be here in earnest. Nobody would be telling me how good I look anymore. Like I've said before, I may be a cancer patient, but I don't want to look like one. My urine would glow in the dark, so my wife and I would have to use separate bathrooms. But we've done that for years. It's one of the keys to a long lasting marriage - separate bathrooms!

The other option, of course, is chemo. Anyone who's read this blog even casually knows my attitude towards chemo. I'm against it, and my wife is even more against it than I am. The chemo drug they'd start me on is called Taxotere. That drug comes with all of the side effects you see from chemo; hair loss, loss of appetite, nausea, severe fatigue, and just feeling like crap overall. If Zofigo would make me feel bad, chemo would make me feel worse. And look worse too. Not that I'm vain or anything.

My oncologist will also check again with the university hospital to see if there are any clinical trials that might be good for me. But I will also ask about potential side effects from those. Many times, in a clinical trial, you're a guinea pig for those things. They may not help at all. You may end up in the placebo group. There's a lot to consider.

I didn't get the chance to ask about any other potential therapies like immunotherapy or proton therapy. Maybe I'll bring those up when we get the results of the scans next week, if only to get his opinion on them, and whether there's someplace local that he can refer me to that does them, and whether he thinks I'd be a candidate for them. Those places would have to take my insurance too, obviously.

Like I was with the news of the last rise in my PSA, I'm doing OK with this news too. Really. One thing you will never get from me in this blog is happy talk. Only the truth, the whole truth, and nothing but the truth. I actually feel really good today. The conversations I've had with loved ones so far today have helped a lot, and it's just the beginning.

No decisions have been made, and none will be made for a while. My only firm decision right now is that I won't begin any new treatment until August, maybe September. There is too much to do before then. Once our 40th anniversary party at the end of July, the summer show with the kids in early August, and the annual music club summer barbecue at the end of August are past, I'll consider taking some time on the sidelines to pursue harsher treatment methods than I've experienced so far.

But even then, I can't guarantee that I'll choose to undergo any of that. It all depends on how I'm feeling, where my heart is, and what my wife wants me to do. Because it's not the amount of days in my life that matter to me, but the amount of life in my days. Quality of life over quantity. And to keep repeating something else I've said in past posts, my main priority is not living as long as I can. It's making sure that my wife is provided for financially. The two might be mutually exclusive, for reasons I can't fully explain in this blog.

I appreciate all of your love, support and prayers more than I can express. If you believe in prayer, please pray that God would grant us peace and the wisdom to make the right choices for us. If you feel led to pray for my healing, please do so. If we are friends, what I need from you more than anything is contact. Just being there is enough.

Before you suggest an alternative treatment, please remember that we can't pay out of pocket for anything like that. We're pretty much confined to what insurance covers. And before you tell me to keep fighting, please remember that that's the exact question we're trying to answer over the next two and a half months. How much longer to keep "fighting."

I know this isn't the news you wanted to hear. The word my oncologist uses to describe my cancer is deranged. It seems to find a way around whatever we throw at it, and in pretty short order. I can't help but believe that would be the case with any future treatments as well. The choice we are faced with over the course of this summer is when to stop throwing and just enjoy the time we have left. #waroncancer #bearingwitness

Friday, June 16, 2017

On The Move


I got my PSA result from yesterday. It's .98. That's almost tripled in the last month, and nearly into whole numbers. The number is still in the "normal" range, but as my oncologist says, it's not about the number, it's about the trend. The trend is in the wrong direction, and it's rising fast. If we keep doing what we've been doing, it will be in the abnormal range very soon. My cancer is on the move again.

My oncologist thought this number significant enough to have one of the nurses call me with this result. Normally, I find it out online. That tells me something. He wanted me to hear it from a person I like and trust.

The above chart is from my online MyCenturaHealth.com page. It shows the trend from my last three tests. The purpose of getting tested again only a month after my last test was to see if the last rise was just random fluctuation. To get another "data point," as my oncologist put it. Well, we have our answer. As we suspected, the combination of Lupron and Xtandi only kept my cancer under control for a few months.

I'm not sure what our options are at this point. After 21 months of hormone treatment and two full rounds of cannabis oil treatment, one oral and one suppository, we're back at square one. That's what my oncologist and I will talk about on Tuesday. I hate having to wait that long to have that conversation, but he couldn't see me today or Monday.

I'm doing okay with this news. It didn't hit me as hard as the last number. This was expected. It just confirms what we thought was happening.

I'm gonna try hard this weekend not to speculate too much about what the future might hold. Believe it or not, this is not the worst news we've received in the past couple of weeks. The worst news we got was financial in nature. It will severely restrict my ability to seek alternative treatments, and it will force us to burn through my little IRA much faster than we thought we would, just to pay our bills. This will be as much a factor in our decision making as anything.

But it's not time to make any decisions yet. We don't have all of the information we need. I'm pretty sure my oncologist will order a new bone scan and an MRI of my sore left shoulder to see if they can find evidence of my cancer spreading any further. And we'll talk about treatments that might still be available to me.

To any who say I shouldn't be concerned about this, that the number is still very low, I would point you to my past history with this disease. My PSA when I was diagnosed was 15.8. After my first Lupron shot, it went down to 4.00, then to 1.42. It stayed there for nearly a year, then started rising, to 1.97, then 2.7, where it was when my bone mets were found in a bone scan, then 4.77, right before I started taking Xtandi late last September. Xtandi pushed that number down to .16, then .06 last March. But that only lasted for two months. My PSA started rising again in May, and is continuing to rise now, just like it did before. If an effective new treatment that I will accept isn't available at no cost, my cancer will continue to multiply exponentially, with each rise orders of magnitude higher than the last.

I apologize to any who are close to me who might have expected a call or a text about this news. It's been my history to do that, but this time, I thought I'd wait till I talk with my oncologist, so we can have a more informed conversation. I'm not gonna jump to any conclusions about this just yet. We have a few months to let things play out before we need to make any final decisions.

Just know this. My wife and I are in complete agreement in our philosophy and beliefs about this. Any decisions will be made by both of us. When the time comes, I'll have her write a paragraph in her own words so you know how she feels.

I also know how you feel about this, and I love you right back. But before you inundate me with treatment suggestions, remember my post The Suggestion Box. And please also read Explaining Myself... Again if you haven't already. Then you'll have a good idea of what our priorities are. My living longer is not necessarily at the top of the list.

I have lots more to say, but those things should probably wait for future posts. I want to talk about "fighting," and why I don't understand why cancer is put in those terms when no other disease is. I want to talk about mortality, and try to explain my attitude towards it. I want to talk about trusting God, and what that means to me. I want to give you the best picture of my marriage that I can, so you won't feel like I'm being selfish. On the contrary, I am prepared to make the most selfless decision I could possibly make, to benefit the one I love the most.

I'm gonna try to have a good weekend and put this out of my mind as much as I can. I still feel good except for the pain in my left shoulder, and the constant fatigue that limits everything I do. I have rehearsals with the rock band school for kids starting on Monday for our summer show. I'm very much looking forward to that. I have recording equipment to sell, and a 40th anniversary party to get ready for. I have life to live yet, and I'm not anywhere near done. Cancer will eventually have its way with me, but not yet. Not yet. #waroncancer #bearingwitness

Wednesday, June 14, 2017

Mark's Excellent Road Trip, Part Four: The Road Home


It's been a day since I arrived at home here in Denver, Colorado. This is the first chance I've had to write, and I'm so tired, I don't know if I can finish this post tonight. But I'll try. Today was supposed to be a "recovery day," but it didn't quite work out that way. Tomorrow should be better.

I got up early on Monday morning, and made myself a couple of sandwiches from the bread, deli meat, and cheese Lori had so graciously provided. She also packed me a goodie bag of apples, nuts, and muffins. They helped sustain me that first day. But even though I had a long drive ahead of me, I lingered at the Caminiti house. I wanted to get home, but I didn't want to leave. Anyone who's been a guest in their home knows what I mean. There were lots of hugs and thanks, and it was nearly 11:00 AM before my car headed towards home.

This time, I consulted my Maps app, and discovered I-17 north to Flagstaff. This seemed a much better option to me than desert mountain driving on state highways with no gas stations, even though it wasn't quite as direct. But it wasn't much better. Two Wide Load trucks carrying what looked like giant supports for a freeway overpass or something, spaced far apart, slowed traffic to a near standstill almost all the way to I-40, just south of Flagstaff. On the positive side, at least there were gas stations. With bathrooms.

Once I reached I-40 and headed east, I started looking for the Meteor Crater. But the first thing I noticed was the wind. It was insanely windy that day. I think it might be like that most of the time. Even my little Toyota RAV 4 is considered a high profile vehicle, and at some points, I felt like I'd be blown right off of the road, if not carried off to Oz. I hoped the wind would die down by the time I reached the crater, but no such luck. If anything, it was worse. Apparently, that's the norm, because in the gift shop, there was a T-shirt that read, "I survived the wind at Meteor Crater."

But despite the wind, I'm glad I saw this wonder that I've always wanted to see in person. I'm surprised how well the panoramic shot above turned out, considering I was afraid the wind would blow my phone out of my hand.

It's impossible to convey the sheer size of this crater unless you see it in person. Pictures don't do it justice. It's hard to imagine the size of the rock that made that hole. But there were fragments on display, and for sale in the gift shop! No, I didn't buy any.

That planned selfie standing on a corner in Winslow, Arizona never happened. Winslow isn't right on the interstate, and I didn't want to take the time. My GPS now said I'd pull in at my motel in Alubuquerque shortly before 8:00 PM. No more unnecessary stops. It was getting late.

I fought wind on the highway all the way to Albuquerque. Or maybe it just seems that way in my memory now. But it was exhausting. I finally did arrive at about 7:45 PM. It's a good thing, too. Unbeknownst to me, their office closes at 8:00 PM. My papers were being prepared for a lock box when I arrived.

It didn't take long for me to eat something and go straight to bed. I planned to sleep until I felt like getting up, have some breakfast at the Einstein's across the street, and be on my way. But for some reason, at 5:30 on Tuesday morning, when I was fast asleep, the room phone rang. It was an automated wake up call. I hadn't asked for one, of course. Apparently someone gave the system the wrong room number, or it was a prank. I never really got back to sleep, and it sent my whole day sideways.

I did have that breakfast at Einstein's, with a large coffee to go, and headed north on I-25 toward home. But first, I "checked in" on Facebook with the following post:

Just about to head home on the last leg of my road trip. For some reason, I got an automated wake up call at 5:30 this morning that I didn't ask for, so I'm really dragging today, with an 8 hour drive ahead of me. Your prayers are appreciated!

As with each leg of this trip, I prayed that God would help and protect me. And the more I drove, the more I could feel people's prayers. I've often said in this blog that I've heard people say they could feel people's prayers many times before, but never understood it until I was diagnosed with cancer. Now, I understand what that feels like, and the feeling has never been stronger than it was that day. That feeling carried me all the way home. Each time I stopped, which was not often, I looked at Facebook and saw people's responses, and it encouraged me. I'll never be able to thank all of you enough for your prayers.

All day, I texted my wife to tell her where I was and how much longer I expected to be. I didn't want her to worry, and she wanted to know when to plan dinner. Despite my fatigue, this was the easiest leg of the trip.

When I walked in the door, my wife, my dog, and my cat were all there to greet me. My wife and I embraced for a long time. She told me I'm never doing that again, and I agreed. Later, during dinner, I also promised her that I'd never leave her for that long again. We don't have time for that. One long self indulgent road trip that could have been done cheaper by flying is enough.

I'll never be any stronger than I am right now. I'll only get weaker from here. So long driving trips that take multiple days are not in the cards anymore. Just another case of accepting my new limits, which seem to get more limiting all the time.

I can't close this road trip series without a Neal Morse reference. As you know, one of my goals for this trip was to listen to his entire catalog, or as much of it as I could, in chronological order on this trip. I listened to all of the studio albums I own first, then the live recordings. At one point, a live version of an epic called Stranger In Your Soul was playing. It's a song by Transatlantic, a band both Neal and his drummer Mike Portnoy are in. It's been one of my favorites for years, and it's a song I've actually performed live at a Prog Fest here in Denver several years ago. So I know this song very well, since I had to learn it. One passage in this song jumped out at me as I drove:

When you come to make love your only goal
Words cannot describe the feeling

I can testify that those lyrics are true, because I have made love my only goal. Not beating cancer or living longer, but love. And words really can't describe the feeling.

I get my next PSA test and Xgeva shot tomorrow morning. This test is for all the marbles. But just as the prayers of my friends carried me home on Tuesday, I know your prayers will lift me up no matter what the numbers reveal about my cancer. Because when you come to make love your only goal, words cannot describe the feeling. #waroncancer #bearingwitness #marksexcellentroadtrip

Sunday, June 11, 2017

Mark's Excellent Road Trip Part Three: The Benefits of Cancer


Yesterday, the time had come for the event I drove so far to be here for; my friend Christopher Caminti's birthday party and cancer benefit concert. At least I thought I drove a long way, but others drove even farther. Which shows how much love there is for the man we came to support. After two days of travel, I'd had a recovery day on Friday, and I felt like myself again. My energy level was high. I told Christopher's wife Lori yesterday that I was here to help in any way I could. And help I did, though not as much as many there did, Lori in particular. She never stopped the whole day, even to eat.

An event like that takes an incredible amount of planning and preparation. And for the principal player involved, a ridiculous amount of individual practice and group rehearsals. People who don't understand why Christopher or I would ever decide to stop performing have no idea the amount of energy it takes, not just to perform, but to prepare for a performance. I am exhausted today, and I wasn't beating things with a stick all night last night!

But just as my final big public performance was worth all it cost me, I know the same is true for Christopher. In spite of the pain he's in, and the amount of time it will take him to recover, there is a big smile on his face today. Not just because of the joy of playing music, which we both share, but because of the amount of love and support he received last night, and during the weeks leading up to the event.

I've met some new friends since I've been here. Most of them have known Christopher or Lori for many years. When they asked me how I met my hosts, I told them we met on Facebook just over a year ago. We connected because we're both so public about our prostate cancer journeys. They were some of the first people I sent a cross pendant to, months before my wife started making them. We never would have met if it weren't for cancer. I definitely would not have made this trip if not for that, even though cancer treatment made the journey that much harder.

Cancer is a terrible thing, especially the deadly kind Christopher and I have. But it does have its benefits. And I don't mean just benefit concerts like last night.

There was another scary vehicular moment before the concert, while we were setting up. Christopher's long time friend Jes and I went back to the house to pick up some forgotten items. Jes was driving, and I was in the passenger seat. It was a windy day. On the way back, we passed a furniture store that had mattresses and a box spring frame sitting outside, in front of the store. The frame got caught by the wind, blew out into the street, and hit the car on my side. No major damage was done, and we were both fine, though a bit shaken up. Once again, I felt like God protected me on the road. It could have been much worse.

The benefit was a tremendous success. A lot of money was raised to help Christopher and Lori, but more importantly, a whole bunch of love was showered on him. The money will eventually run out, but the love never will. Around 200 people came. There weren't enough chairs for everyone, but at a rock show, standing room is a good thing. It's hard to rock out when everyone's sitting down. And each of the bands rocked out big time.

Christopher played in four different bands. Drums are the most physical of instruments to play. It takes a lot of energy and endurance. But between sets, Christopher never sat down to rest. There were too many people to talk to. Too many old friends to reconnect with. So he spent his breaks on his feet, talking to people who came to see him and support him. That alone costs a lot of energy. I've worked many events where, between performances, I was required to be on my feet, interacting with people. It's exhausting having to be "on" all the time, to be the one everyone wants to talk to. I know. I've been there. And that was when I was healthy. Christopher did it like a trooper last night, even at the advanced state of his cancer, and with the amount of damage treatment has done to his body.

It was Christopher's night. The drum riser was set front and center, which meant the lead singers had to go around behind him to work the stage! As a lead singer myself, I was somewhat bemused by this. We're supposed to be the focal point. But it was the drummer everyone had come to see last night. By the time the third band began their set, I could tell his energy was starting to wane. But he powered through. I was very impressed with his playing and his determination to finish strong.

I had a job to do at the event as well. I manned the raffle prize table. Lori kept checking on me, making sure I had what I needed, and asking me how I was feeling, like the caregiver she is. She was pulled in twenty different directions the whole time, but she always found time to take care of me. At one point, she asked how I was doing, and I was honest. I was getting tired. It was getting to be past my bedtime. She told me to go back to their house and go to bed whenever I needed to. But my brother Christopher was powering through, so I would too.

At the end of the concert, Christopher was presented with a guitar signed by all of the members of each band. He was genuinely moved, and was unable to speak for a moment. Love was in the air, and all of us could feel it.

Afterwards, I stayed to help clean up and load out, as I'd been there for load in and setup. My car was needed to carry tables and chairs. Once I was up and moving, my energy returned. They had lots of help, and I was happy to be part of the crew.

I didn't get to bed until around 1:00 AM, and had trouble falling asleep even then. Christopher and Lori stayed up even later, talking and laughing with friends. It was an awesome night. Even with the long day preceding it, it was hard to come down from the adrenaline high we all felt.

Would that many people have shown up for a reunion of those bands if Christopher didn't have cancer? Doubtful. Would I have been here? Would I even know them? Not at all. The benefits of cancer.

Today was a recovery day for all of us. Some of Lori's family stopped by for dinner, and Christopher opened birthday cards and gifts. More evidence of the love there is for this man was on display. I told him that one thing I'd learned from being with them for the past few days is just how much love there is for him, and the closer I got to his inner circle, the more love I saw. The people who know him the best love him the most.

Christopher and I have each been amazed by the outpourings of love and support we've received. I don't think either of us grasped just how much love there is for us out there until we went public with our cancer. As horrible as our disease is, that much love is a benefit that helps us get through it.

Tomorrow morning, I begin my drive back home. I have every intention of standing on that corner in Winslow, and visiting the Meteor Crater. I'll continue my listening tour of the Neal Morse catalog. I'm partway through the live albums now, a couple of tracks into the So Many Roads album. I probably won't write again until I get back home on Tuesday. I don't want to compromise my energy level for the final leg to Denver on Tuesday by staying up late writing Monday night. Unless I get really inspired, of course.  That's always a possibility. For me, inspiration has been one of the benefits of cancer.

Please continue to pray for my safety and protection on the road. If you've been reading, you can see I've clearly needed it. Wednesday morning, I get my next PSA test, and expect to have major cancer news by the end of the week, one way or the other.

I'm so grateful to Christopher and Lori for their hospitality to me these past few days. Our friendship has been a true benefit of cancer, for it would not have happened otherwise. If we were both cured tomorrow, we would continue to be fast friends, and find reasons to travel to see one another. Christopher's benefit was a great success, but for us, our friendship is the best benefit of all. #waroncancer #bearingwitness #marksexcellentroadtrip #prayforchris

Friday, June 9, 2017

Mark's Excellent Road Trip, Part Two: Running On Fumes


It's been a long day
But I feel I must travel
-Neal Morse, The Similitude Of A Dream

In the first post of this series, I said that I expected the next day to be an altogether different sort of day than the first. It was. On the first day, my energy level was high, and I was all about taking in my surroundings. But I didn't sleep well that night. I rarely do when I stay up late to write, like I did that night. And the bed at the Motel 6 was not very comfortable. Good thing I brought my own pillow, or it would have been worse.

So I decided not to write last night, once I'd arrived here in Chandler, Arizona, at the home of my friends Christopher and Lori Caminiti. Better to get a good night's rest and write the next day. I'd been running on fumes the whole day, in more ways than one.

I also stated in my last post that I intended to drive on Route 66 on my way here. I wanted to have a burger at a classic diner on that historic road for lunch. I wanted to take in the Painted Desert and see the Meteor Crater near Winslow. I wanted to take a selfie "standing on a corner in Winslow Arizona," to quote the Eagles. But only one of those things happened.

As it turns out, Route 66 was decommissioned many years ago. But there are stretches of what's called "Historic 66" that you can still drive. But it confused my GPS to go that way, so I pretty much stayed on I-40. And I was so tired that I just wanted to get here.

The drive yesterday turned out to be longer than the one to Albuquerque. In spite of the fact that the weather was better yesterday, this drive had its own perils, borne mostly from my ignorance of the country I'd be traversing.

As I began my drive, I prayed that God would help and protect me, like I did the day before. He answered that prayer on Wednesday, and I had every confidence that he would again. But my confidence wavered a bit later in the day.

I intentionally skipped breakfast so I'd be hungry for that greasy burger I anticipated for lunch. I did have enough in my stomach to take my pills before I left, however. I never, EVER skip my dose of Xtandi. That would be a very bad idea. I began to get hungry around 11:00 AM, and started looking in earnest for that elusive greasy spoon diner. I think I was picturing something from Happy Days.

Because of the sheer number of billboards I saw for one place in particular, I stopped at a historic hotel/motel/restaurant in Gallup, New Mexico called El Rancho. It was right on Historic 66. Perfect. I'm sorry to say that the burger and the service were both substandard. But at least I was able to check one item off of my list, and get some much needed calories. I tend to lose weight fast because of my cancer and the treatment I'm on, in case you're new here. So I need to make sure I eat enough throughout the day, even when I don't feel like it.

Lunch took much longer than it should have, and this time, it didn't save me from a hailstorm. It just delayed my arrival by about an hour. Fatigue was starting to set in, and I still had several hours of driving to go, through desert and mountains.

Plans to stop in Winslow and at the Meteor Crater were set aside. My GPS gave me an arrival time of around 5:30 PM, and I didn't want to be any later than that. So I'll try to stop at those places on my way back.

I didn't realize that there is no interstate highway that leads from Albuquerque, New Mexico to Phoenix, Arizona. What's up with that? Once you turn south from I-40, there is nothing but a series of state highways, often two lanes, with very little "civilization." I was just following my GPS's directions, and hoping it didn't lead me astray. If you've ever taken a long road trip to places you've never been, and relied on a GPS device to get where you're going, you know that feeling.

The first state highway led through scrubby desert country. The next began to climb into the mountains, and soon I was surprised by an evergreen forest all around me. I was not expecting that in Arizona. It reminded me of my home state of Colorado, except for the absence of snow-capped peaks above the tree line. No such thing in this part of Arizona.

I think it was in this part of the drive that I passed a tiny town with a gas station. But I still had nearly a half tank of gas, and my GPS said I'd be arriving at my destination at around 5:15 PM. It seemed I had gained a little time. The clock in my car said that was less than an hour away, so I thought I was fine.

By the time I turned onto Arizona Highway 87, I had descended into mountainous desert, this time dotted with gigantic cacti, the kind you see in Road Runner cartoons. They seemed to be twenty to thirty feet tall, and they were everywhere. As I descended, the temperature climbed, and the needle in my gas gauge fell. I began to wonder when I'd find another town with a gas station.

Seriously, these things were everywhere. The top one had to be at least 30 feet tall.

It was at that point that I began to pray in earnest. Lord, help me to find a gas station before I ran out of gas in the middle of the desert. I was running on fumes, and now, so was my car. Around this time, I looked at my GPS and saw that my next turn was in 58 miles. It then dawned on me that Arizona does not change to Daylight Savings Time, so my car clock was off by an hour. I began to be alarmed that I'd run out of gas before I found a place to fill up.

This happened to me once before, while driving to a gig in northern Wyoming several years ago. Until then, I had only driven through states with gas stations at every exit. My assumption that Wyoming would be like that nearly caused me to run out of gas in an area with no cell phone service. I managed to find one in that instance by following my GPS's directions, backtracking some ten miles to the nearest gas station in the dictionary definition of The Middle Of Nowhere. I found myself hoping and praying that similar fortune would find me in this situation.

At one point, a raven about the size of a 747 (a slight exaggeration, but in my worried state, that's how it looked) landed on top one of the cacti, and looked right at my car. The needle on my gas gauge was reaching that point where it begins to float between what looked like about an eighth of a tank and empty. Still no gas stations in sight. It felt like that raven was just waiting for my car to sputter to a stop so it could peck the eyes from my desiccated corpse at its leisure.

Suddenly, my phone dinged. A message from Christopher, wondering what my ETA was. I finally pulled over and told him my trouble. I asked Siri where the next gas station was, and she told me it was eighteen miles ahead. My GPS told me the same thing. Eighteen miles of mountain driving on less than an eighth of a tank. Christopher said if I ran out of gas, he'd bring me some. But I would have had to wait in a hot car in 100 plus degree temperatures for help to arrive. So I kept driving, and kept praying.

All this time, I continued to listen to the Neal Morse catalog. I'd begun the day with Testimony 2, then Momentum, followed by the first two albums by The Neal Morse Band, The Grand Experiment, and their masterpiece, The Similitude Of A Dream. I smiled ironically at the opening lines of that album, which I quote at the top of this post. It had indeed been a long day, and I still had to travel.

At one point I prayed, "Lord, you fed 15,000 people with a few loaves and fishes. I know you can help this little car stretch what little gas I have left." I was sure the little yellow light indicating that I was about to run out of gas would come on, but it never did. The Chevron station my GPS had found grew closer. Ten miles. Six. Three. One. Finally, I saw it on the left, and pulled in, thanking God. He had protected me again.

You might scoff at this, but you weren't there. You might call it "lucking out," as a friend did my hail story in my last post. But I don't believe in luck. I believe in a personal God who protects us when we need him to. Sometimes when we don't even ask, and have no idea what he's protected us from. What's that old expression? God protects idiots and the insane. That would be me.

Once I had a full tank of gas again, the worst difficulty I encountered was rush hour traffic in the Phoenix/Mesa/Chandler area. But before long, I had arrived at my friends' beautiful home in Chandler.

The view from the Caminitis' back patio. Nice neighborhood.

It was indeed, to quote my musical hero, a long day, and I did need to travel. And once again, I felt the hand of God on me, even in the midst of my fear. After my ordeal in Wyoming several years back, I learned to fill up when I saw a gas station the next time I drove through that state, whether I needed gas at that point or not. I learned the same lesson here in Arizona yesterday. And I learned yet again to trust God when it looks like I'm in big trouble. Next week, when I get my PSA checked, and see my oncologist, I'll try to remember this lesson. #waroncancer #bearingwitness #marksexcellentroadtrip

Wednesday, June 7, 2017

Mark's Excellent Road Trip, Part One: The Majesty And Glory


Am I crazy? Why yes, of course I am. But you already knew that. What I mean is, am I crazy to embark on a long road trip like this knowing my condition, knowing I'd be driving for eight hours today after having had a date night with my wife at a local concert last night? I'm on my way to visit and support friends, and a very special cancer brother. It's called adding life to my days.

I wouldn't have missed the concert for the world, even staring at two straight days of long distance driving. I was also supporting a friend there. But mainly, it was time with my beloved. Memo to the husbands out there: If you're going away for a week, a date night the night before is a really good idea. No matter how long your journey is, or how early your flight is the next day. Just a tip from a guy who's been at this for almost 40 years.

I'm on this excellent road trip to visit my friends Christopher and Lori Caminti, the couple that my wife and I met in Santa Fe, New Mexico last April. I talk about them in my post The Incredible Shrinking Man. Christopher is a Stage 4 prostate cancer patient like me, but his cancer is more advanced than mine is. He is a true warrior. I'm a wimp compared to him. I'm really excited to see them tomorrow, and stay with them until Monday.

But while being with my friends is the primary reason for this trip, which as you know is always a huge priority for me, there are other benefits too. This is my first solo road trip post-cancer. I used to drive alone to faraway gigs quite often, and always enjoyed doing that, but that was before I started getting Lupron shots in my posterior. I'm attempting this trip after having been on hormone treatment for 21 months. I'm taking that into account. Never fear. I stop often and stay alert. Recovery days are built into this trip. That's why it's taking a week.

My main concern has not been fatigue. It's been the pain in my left shoulder. For the uninitiated, when I was first diagnosed, doctors thought they found cancer in the bones of my left shoulder. They eventually decided that what they'd found there wasn't cancer, that it was more likely some kind of tendonitis thing. Well, now it hurts all the time. At my last visit with my oncologist, he told me to take ibuprofen at a certain dose level, and to do rotator cuff exercises. If it hasn't improved when I see him next week, we'll do more scans. I've been taking the ibuprofen, but I haven't been doing the exercises. And I've been taking more ibuprofen than he prescribed. It isn't any better. If anything, it's worse.

Driving is especially painful. I have to hold my arm in one position for long stretches. I can switch it around a bit, but I need to drive with two hands. So my shoulder did hurt during the drive, but it was more or less manageable. We'll see how it feels tomorrow.

I'm staying at a motel in Albuquerque, New Mexico tonight. I left our house in Denver, Colorado at around 9:30 this morning, Mountain Daylight Time. I arrived at the motel around 5:30 this afternoon. But I don't want to talk about my itinerary. I want to talk about my journey. Today was more eventful and meaningful than I anticipated it would be. And more exciting! And through it all, God spoke to me.

I've talked before in this blog about my favorite rock musician, Neal Morse, and his band, (also my favorite band) The Neal Morse Band in my post The Album I Can't Stop Listening To. His music has been a balm to my soul since I was diagnosed. I own most of his albums, both the studio albums and live recordings. So since I had this long drive coming up, I decided I wanted to do something I'd never done before; listen to all of his progressive rock albums in chronological order. I started with the studio albums, and when I'm through those, I'll listen to all of the live recordings, also in chronological order. All the ones I have, anyway. They're all conveniently arranged in order on my iPod. No changing CD's while driving on the interstate for me.

You might think there wouldn't be enough music to fill that much drive time, but you'd be wrong. The Google Machine tells me that the drive time for this trip is 26 hours total, round trip. My playlist for this trip is 36 hours! That's prog for ya. Being able to listen to all of this music that I love so much in the order that it was made while being surrounded by some of the most majestic scenery on this planet has been beyond inspirational. And I'm just getting started.

In case you're wondering, I didn't take that picture at the top. Thank goodness for Google Image. But as I drove south on I-25 this morning, I looked at that exact view, from a few angles and distances. I hadn't even gotten to Colorado Springs yet, maybe an hour from my house, and I found myself looking straight at Pike's Peak. And while I'm looking forward to seeing places I've never seen before in New Mexico and Arizona, I was reminded how beautiful my own state is. How can I forget that? Pikes Peak, a place people from all over the world travel to see, and I've driven right by it many times without even noticing it.

So while I'm on this road, (and trying to keep my eyes on the road!) I'm also trying to be aware of my surroundings, of the beauty that I pass by. I don't want to just drive by and not see it. I've been guilty of that too many times, living in such a beautiful state. I don't want to be guilty of that now. Not today. Not on this trip.

I've made this drive south into New Mexico a few times before, and one of my favorite moments is always when you come over Raton Pass, and Colorado foothills suddenly give way to The Land Of Enchantment. Rolling plains and gigantic mesas surround you, with otherworldy coloring. It's a truly magical place. I stopped at a rest area for lunch. My wonderful wife had made me some wraps so I wouldn't be stuck with fast food at an interstate exit. This rest area had little stone shelters with picnic tables. Of course, I took a selfie and posted it to Facebook. I never used to understand people who narrate their lives on Facebook, and now, here I am, doing it myself.


But it seems there was more to this stop than wraps with nice surroundings. I took my time, and it was a good thing I did.

After having taken in the majesty of Pikes Peak earlier, and being focused on taking all of this splendor in, I continued south on I-25. Before long, in the distance, I could see enormous storm clouds straight ahead, and on both sides. What looked like a solid, torrential downpour streamed from each. I wish I'd had the chance to take a picture of it. They were fearsome and awesome. Awesome from a distance, anyway. I hoped and prayed I would avoid all of those storms. And I did, just barely.

While the storms were still far off, pouring their wrath on the majestic mesas of New Mexico, I happened to be listening to the third album in my playlist, Question Mark by Neal Morse. It's a concept album about the Temple in ancient Israel, and how God was present in his Temple. But it goes on to say that since Jesus came, we all can be the Temple of the living God. God lives in us now, not in a temple made with human hands.

As I watched the storms ahead and listened to this album, I had my first real moment of worship. A choir began singing a passage I'd heard many times before:

And the glory,
And the glory of the Lord
Shall be revealed

I can tell you, the glory of the Lord was revealed right in front of me as I drove. My eyes teared up, and I had a lump in my throat. God was very real, and very close. If you're not a believer, I can't describe to you what it's like to have that experience. I wish I could.

Every time I thought I was going to drive straight into one of those storms, the road curved, and it passed to the side. There was a little rain, but nothing serious. My mind began to wander as the open road passed under my wheels.

I began speculating about the upcoming consultation I'll have with my oncologist after my next PSA test this Wednesday, the day after I get home. One that could end with a shrug, or some very hard choices. By this time, the third Neal Morse album in my playlist had ended, and I was listening to the fourth, Sola Scriptura. It's another concept album, this time about Martin Luther and the Reformation. Two lines jumped out at me as I pondered my mortality:

God will make a way 
He will decide my fate 
Whether or not I live or die

Not doctors or treatments, but God. I've heard those words many times before, but today, I felt they were just for me. And then, I saw an example of how true that is. A really scary, and at the same time, hilarious example.

Yet again, as I approached what looked like the worst of the storms, the road curved again, and suddenly the storm was off to the east, moving away. Up ahead, I saw red and blue flashing lights. I thought it was probably an accident. But it wasn't. It was snowplows. That storm had left inches of hail on the highway. By the time I reached it, the road was fairly clear, but the plows were still working, throwing amazing amounts of hail in their wake.

How close had I come to being right in the middle of that storm in my little 2003 Toyota RAV4? Perilously close. If I hadn't taken my time at lunch, my car might have been totaled, and so might I have been. I laughed in amazement and thanked God out loud for sparing me from that storm.

There are times when I experience God in a very sweet, intimate way. But today, it was all about the majesty and glory. It was about his power. How big he is, and how small I am. Who could see what I've seen today, and hear what I heard, when I heard it, and doubt it?

Because I've made most of this drive a few times before, I didn't expect much from this leg of the trip. But this was quite a kickoff to Mark's Excellent Road Trip. From this point on, I'm traveling to parts unknown. With my eyes, ears, and heart open. I expect tomorrow to be an altogether different sort of day. A day filled with Americana, as I'm driving Route 66 for the first time in my life. I plan to find a classic diner for lunch, see the Meteor Crater, and of course, be standing on a corner in Winslow, Arizona. If you don't get that reference, go put yourself in timeout. And by late afternoon, I'll be with my friends.

It's way past time for me to go to bed. It's been a very long day. But I had to tell you this story. It's been my plan all along to blog at each stop of this road trip, and I'm gonna do it. The first day of this journey was one to remember. Mostly because the majesty and glory of the Lord were revealed to me in a new way, and I was shown how my life is in his hands. #waroncancer #bearingwitness #marksexellentroadtrip

Sunday, June 4, 2017

Everything Must Go


My last recording project is finished. My weekly song parody service for radio ended in May. Starting yesterday, I've begun clearing out my recording studio and researching what the equipment I have might be worth. As of right now, Everything Must Go. Both to make money and to turn the room I've been using as a studio into a guest bedroom. I've been pleasantly surprised by what I can expect to make from sales of my gear, but it isn't just equipment I'm getting rid of. I'm also throwing out years of work. Decades, really. It's a very strange sensation.

Warning: There will be some music gear jargon in this post. Maybe ten people will know what I'm talking about when I name these pieces of equipment. But I'll try to keep that to a minimum. And there is a point to all of it.


I know this isn't very nice picture, but it's necessary to this post. What you see in the picture above are ADAT tapes. If they look like VHS tapes to you, it's because that's what they are. An ADAT machine was an 8-track digital recording deck that used S-VHS tapes. I used one for years. Prior to that, I used a Fostex Model 80 8 track reel-to-reel for my multitrack recording. I recorded my first album, Right Now, on that Fostex reel-to-reel. I recorded my second, Sin No More, and my third, Drive-Thru World, on the ADAT. But both machines will go up for sale soon, so there's no point in keeping all of those tapes. If you zoom in, you can see one of the Sin No More tapes right on top.

It was necessary to do that early in this process because the shelves that housed those tapes need to be cleared before I leave for my road trip this Wednesday so my wife can set up the bed that will be used in this room. The shelves will be in that part of the room, and a bunch of old tapes would not make for a nice decor. Besides, what would I ever do with them now that I'm selling the only decks that can play them?

As you can see, the trashcan is full. I haven't even started with my old reel to reel tapes. They'll go in a box for hauling away. When I think of the amount of work represented on those tapes, not to mention the money that was spent on recording sessions that were preserved on them, it's not easy just tossing them out like I did yesterday. But what I did Friday was even harder.


I haven't used the Fostex for recording since the late 1990's, or the ADAT since 2006. Since then, I've used a "studio in a box." A Roland VS-2480, combination digital multitrack recorder, mixer, and effects unit. I've backed up all of the work I've done on that machine on the built-in DVD-R drive. I'm selling this machine too, so it's necessary to erase what's on the internal hard drive before I do. I did that Friday.


Normally, I'd simply format the hard drive in one step, but I wanted to keep one or two projects on it for demonstration purposes. That made it necessary to delete songs one by one. And there were a lot of songs to delete.

The drive is partitioned, and I've always used the first partition for work that's more day-to-day. My weekly song parodies for my radio clients, for example. I had no trouble deleting all of those songs. I had them backed up, after all. But then, I went to the second partition. On it were the original tracks for my Christmas album, When Joy Was Born. Of my six albums of original music, it's the one I'm most proud of. I think it's the best thing I've ever done. Even though I backed up those files to DVD long ago, I can't tell you how difficult it was to erase those tracks, one by one. It felt like I was deleting part of myself.

On the third partition was my classic rock praise and worship album, Set Free To Worship. It felt equally weird deleting all of those files, even knowing I had backups. Even knowing I didn't want whoever buys this machine to have those tracks, which was the reason for deleting them in the first place. It felt like I was saying that album didn't matter. There's no logic to how I felt, but I felt that way anyway.

One of the other partitions had two new recordings I made for my progressive rock compilation, High Road. It was especially weird deleting those. Those pieces are near and dear to my heart. But I have the CD, obviously, if I ever want to listen to them, just like with all of my albums. I have the 24 bit masters, too. I just won't ever be able to remix them. But I've never been one to remix. Once it's done, it's done in my book.

All of this music is available on my website, by the way. It's also on iTunes, Amazon MP3, and all of the major streaming services. #shamelessplug

Once that was done, I turned my attention to an object that absolutely had to go; the filing cabinet. It only had two drawers, and one of them was broken. So even the cabinet was trash. But inside were years of work and creative energy. Printed music, what musicians call "charts" that I created over the years. Mostly computer printed, but some old hand-written ones too. But I'll never use any of them again, and we need the space, so out they go.

The same drawer that held charts also had the file folder with the correspondence between my third grade teacher and I, a story I tell in A Woman Who Changed My Life. I kept that folder.

It was the bottom drawer that had the most personal investment. Decades worth of lyrics. Mostly silly parodies about some sports team or radio morning show, but some original stuff too. Much of it was written by hand. Before I got a computer in the late 1980's, all of my lyrics were written by hand. There are no other copies. Even much later, when I would drive in to KBPI in Denver to write lyrics with Dean and Rog, and with Joey Teehan, I'd bring a note pad with me and write them down by hand.

That was the weirdest part of all. Carrying those file folders of lyrics out to the trashcan and throwing them in. You can't see them because they're underneath the tapes.

I'm a lyricist at heart and by trade. Or at least, I have been. If you think I'm any good at this writing thing, it's because my writing here has been informed by many years writing music and lyrics. I approach writing a blog post like I would writing a song. Writing lyrics has always been the easiest part of the process for me. And the most meaningful. So even though there's no reason in the world I'll ever need those lyric sheets again, it was still like throwing away a piece of myself when I dumped them in the trashcan on Friday.

But Friday night, I was reminded that those hand written lyrics might mean something to my wife someday. So I asked her about it yesterday morning. She shrugged and said she didn't think so, and once she sells this house, she'll have no room for a big box of lyrics. I offered to dig them out of the trash can for her, but she said never mind. Neither of us wants to go through all of those folders - one for every letter of the alphabet, many overstuffed - to decide what's worth keeping and what isn't. So they stay in the trashcan.

You may think you hear regret in my voice, but you don't. Just a little melancholy. The last thing I want is to keep doing what I've been doing. It had become a fast road to nowhere, with burnout as a constant companion. The realization that I don't have to get a song parody out next week, or the week after, or ever again fills me with such relief. It's just really weird taking your life's work and chucking it.

This might sound like a huge mistake to you. But there is no place to store those lyrics. And there are many more saved on my computer, if I ever want to look through them, or if my wife does. And this step shows that I'm serious about moving on. Anyone who thinks I'll miss it and come running back to recording for a living should take another look at that trashcan. I'm done. Everything Must Go.

But that's not all I did yesterday. My wife and I also had our 40th anniversary pictures taken. She took great care in setting up the place she wanted the pictures taken, here in our home. We don't go to a photography studio. Not our style. It didn't take long, and we got some really great shots. The dog even cooperated.

Early in my cancer journey, I felt this desire to change the direction of my life. I knew what I wanted to stop doing, and I knew what I wanted to do next. But because I had recording work still to do before I could finish, I would often say that I felt like a page had turned, but I had to keep going back and rereading what I'd already read over and over. But not anymore. Now I can finally turn that page for good. So melancholy twinge or no, Everything Must Go.

There was a time, spiritually, shortly after my diagnosis, when I was still hanging on to some of my old mindsets and habits. But I came to realize that in order to have peace, I had to let go of those things. If you want peace, take a look at what's cluttering up your life, spiritually, and drag it to the trashcan, no matter how long you've held on to those things or how attached to them you are. When we look at that stuff and say Everything Must Go, we find peace and freedom.

It's possible that there will come a time when I'll wish I could go through those old lyrics, or that my wife will. But I doubt it. I'd rather press on than look back. We have a whole new life ahead of us, and it starts with converting my studio room into an office/guest room. That's why Everything Must Go. #waroncancer #bearingwitness

Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus. (Philippians 3:13-14)