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

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

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 today, 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

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

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 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 Rick Simpson 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