Thursday, August 17, 2017

The Irony Of It All

I was having coffee with a good friend on Monday. He's a guy I've been working with musically for a little over a year, and we've become very close during that time. I've known him for years, but only worked with him since I got cancer. Our friendship has really just started, and in that short time, we've done a lot. We've made a real difference in some young lives. And had a whole lot of fun in the process.

My friend was talking about the contribution I've made since I joined his endeavor. He realizes that it weren't for cancer, we never would have worked together and become the friends we've become. But because of cancer, our friendship will be short-lived. Or as he put it, "I never would have had you if it weren't for cancer, but because of cancer, I'm gonna lose you."

He's struggling with the irony of it all. There is a whole new category of people in my life that fit that description now. People I would never have met if not for cancer, or would never have gotten to know well. People who I could not imagine life without now. Most of them only know me because of cancer. There is an enormous benefit to our relationship, but with one big drawback. Sooner rather than later, they will lose me, when we've only just begun.

I think of my friend's wife, who I've only become friends with since I was diagnosed, and largely because of that. Recently, she was lamenting the timing of my illness. I asked when a good time would be, and she didn't have an answer. But I'm sure she meant when I'm 90. When our friendship won't have just started.

I think of my therapist, who I can't imagine not knowing. I'll be her first patient to die on her. We would never have met, of course, if it weren't for cancer. There's my nurse, Melanie too. It stands to reason I wouldn't have met her unless I had cancer, but she is a towering figure in my life now. As an oncology nurse, she has a lot of experience losing patients. But I don't think this one will be easy to lose.

I think of the friends I've made online, too numerous to mention. You're a huge part of my support system, yet we never would have interacted if not for cancer. It's horrible, but it brought us together. And each time one of us falls, we all feel the loss.

I think of my protege, who I've talked about before in this blog, and posted videos of on Facebook. I've never called her that here before, but that's what she is to me. We really have just gotten started. I believe I'm helping her get to the next level, though she doesn't need that much help. But I won't be able to help her for long. It's a blessing and a curse. A cruel irony.

My protege is only 17, so I talk with her mom a lot. We have become good friends. She put it this way. She said it's feeling happiness and devastation at the same time. I can see some of you nodding your heads. That's exactly what it is. Happiness and devastation at the same time.

I must be really dense. I've only looked at this from my perspective. On my end, it's all blessing. I get the blessing of all these wonderful people in my life and many more during my last couple of years on earth. I get to work on exciting things and build meaningful relationships, then go on to even greater blessing. But for them, their time of blessing is exchanged for a time of sorrow. Their happiness traded for devastation.

Why did I never realize this? Every person I've invested in since my diagnosis, while we treasure the time we have now, will pay a heavy price for that time down the road. The very thing that brought us together will be the thing that separates us. And yet, they stay with me anyway. Knowing their hearts will be broken. Not one shies away.

Obviously, I have many close friends who have known me for years, some for decades. And of course, my wife and family are closer to me than anyone. Their loss will be much greater than those I speak of in this post. I don't mean to minimize our relationship at all. You are dear to me. I depend on you. But we've had many years together.  The people I'm talking about in this post can't say that. The ones who would never have had me if not for cancer, but who will now lose me because of it, to quote my friend.

To all of these precious people I say this. To me, our relationship is pure blessing. I'm sorry it's a mixture for you. Thank you for sticking with me even though you know it will be painful. I love you. #waroncancer #bearingwitness

Saturday, August 12, 2017

Throwing Stuff At The Wall

My new medication came yesterday. It's called Zytiga. It comes with a side of Prednisone, and it comes in this attractive packaging. You know something's seriously wrong when you get deliveries like this.

What it says on the bag is wrong. Zytiga is not chemo. It's hormone treatment. But apparently CVS Pharmacy thinks all cancer medication is chemo. Or maybe they just don't have hormone therapy bags. Xtandi came in the same bags, and it isn't chemo either.

I've been expecting these pills. I took my first pills today, and I'll keep taking them for as long as they work. There was much more in the box than the two bottles of pills pictured. There were two pill boxes marked with days of the week. There was a timer so you can time when to take your pills. There was a glossy brochure filled with pictures of attractive middle-aged people who are apparently dying of cancer. Actually, I think they were models. I'm pretty sure I've seen the same people in Viagra ads.

What makes this one different than the treatments that came before it is that, for the first time since I began treatment for my cancer, I am not doing doing what my oncologist recommends. He wants me to do chemo. He doesn't think Zytiga will be very effective for me, or at least not for very long. But he can't guarantee good or long-lasting results from chemo, either. At this point, we're just throwing stuff at the wall to see if anything sticks. Nothing has so far, but we keep throwing.

I think that expression was originally about pasta. Has anyone actually thrown pasta at the wall to see if it stuck? If it sticks, it's done, right? Well, my pasta has apparently been al dente for two years.

Starting this medication did not come without some drama. Very little does in my life these days. When the package was delivered yesterday, I pulled all of this stuff out of the box it came in and looked it over. The more I did, the less comfortable I became. When I looked at the bottle of Zytiga in the chemo bag and contemplated opening it and taking four of the pills inside first thing this morning, I was filled with a feeling of revulsion. A sick feeling in the pit of my stomach. I felt an unexplainable aversion to taking these pills. On the one hand, it felt like my brain saying yes but my heart saying no. That happens a lot. On the other, it felt like I was just tired of taking pills. I wanted to be done with that. To be honest, I still do.

I told my wife about how I was feeling. She made all of the rational points in favor of taking Zytiga. But it wasn't about rationality. It was just a feeling I couldn't explain. She's lived with me long enough to know how big I am on following my heart. Ultimately, I have to do what I feel is right, no matter how it looks.

As I thought about it last night, I decided to make a list of pros and cons for taking Zytiga. Here's what I came up with.

1. Little to no expected side effects.
2. Expected to add a few months to the six I can expect before I start to experience symptoms.
3. It's 100% covered.
4. Prednisone may help my sore shoulder.
5. Melanie thinks I should.

1. My heart tells me not to.

Not much of a comparison, when you think about it that way. But to tell you the truth - which I always do - if I had felt this morning like I felt last night, I wouldn't have taken my first dose of Zytiga this morning. I would have waited until I felt differently, if I ever did. But the aversion passed with the dawn, and I took my pills.

But this is it. Unless a clinical trial is discovered for me in the next six months, this will be the last conventional treatment I'll take for my cancer. These pills and one more Lupron shot. Maybe my aversion episode was a case of senioritis. I can see graduation coming, and I'm tired of being a student. It would be one thing if this treatment was expected to cure me, or significantly extend my life, but no treatment is expected to do that.

Even so, I am not sad or depressed. It's a gorgeous day here in Denver, Colorado. My wife and I will go to lunch and see a movie this afternoon. We're looking forward to spending time with close friends next week, and so excited about Morsefest at the end of this month we can hardly stand ourselves. I feel fine. I just get tired easily is all.

I am thankful for every day with no symptoms. Each one is a gift from God. He gives me these good days, not treatment. When I'm done with this treatment and keep having good days that no one can explain, he will get all of the credit. I just have one more strand of pasta to throw at the wall. If this one doesn't stick, it will be time for dessert. #waroncancer #bearingwitness

Tuesday, August 8, 2017

The Conclusion

After meeting with two oncologists in the last two days, we've learned a lot, and come to some conclusions. You may not like our conclusions, but this is where we are.

Yesterday, I met with an oncologist - not my usual one, but one at the local university hospital - to inquire about clinical trials I might be a candidate for. There was a wealth of information, but the short answer is that there aren't any trials at that facility that are right for me at this time. That could change in six months, but right now, all the trials they have for prostate cancer either exclude prior use of Xtandi, which I just finished taking a month ago, or they involve chemo, which I won't do.

One interesting thing this oncologist said was that she thought I've probably had cancer for about ten years. I just wasn't diagnosed until 2015. My PSA rose incrementally, but steadily, every year since 2001, when it was 4.0 and I was 46. They didn't test men in their 40's for prostate cancer in those days. Some doctors still don't. It wasn't until that two year period between 2013 and 2015 that the new, more aggressive version made its appearance, my PSA spiked, and my cancer became unstoppable. If I'd been diagnosed prior to 2013, and had surgery then, I'd probably be fine now, with expectation of a normal life span. But I had no insurance and no doctor then. Woulda, coulda, shoulda.

She reminded me of all the factors I've had stacked against me; late diagnosis of an already advanced and very aggressive cancer, my cancer becoming resistant to hormone treatment so early, metastasis advancing so rapidly, and so on. Considering all of these factors, I've done incredibly well. It's been two years since my diagnosis, and I still have no symptoms. But I will, and soon. I have no illusions about that.

Her recommendations were that I start taking Zytiga, which is another hormone treatment like Lupron and Xtandi, and possibly combine it with Radium 223 treatment, also known as Zofigo. Sounds like a cheesy magic act. "Ladies and gentlemen, the Amazing Zofigo!" That's the one that gives you radioactive urine. Lovely. But she thinks I should do chemo too.

This morning, I met my oncologist to discuss all of this. He really, really wants me to do chemo. Taxotere. Nasty stuff. But unlike yesterday's oncologist, who said she thought I'd get about four months from chemo, my oncologist thinks I'd get more time than that. What quality of time I'd get, he wouldn't say. He also admitted that my cancer seems especially tough and resilient. Nothing much seems to phase it for very long. So it is possible, even likely, that I'd go through that and only get good results for a short time. But he still thinks it's the best treatment for me.

He's less enthusiastic about Zytiga. He's pessimistic about how long that would be effective for me. But it's the only treatment he has available that wouldn't have side effects that would keep me from doing what I love.

At the same time, he's looking into the Radium 223 treatment for me as well. It's a radioactive isotope that they give you in an IV. It's supposed to specifically attack cancer in bones. Other than the fact that it gives you radioactive pee so you have to use a different toilet than everyone else in the world, the main problem with that treatment is it doesn't lower PSA. So there's no way to tell if it's working. I'm still trying to keep an open mind about that one, but I don't like the sound of it.

I know you have to take Zytiga on an empty stomach, and that was a concern for me because of my issues with losing weight. I need to try to avoid having an empty stomach. But my beloved nurse Melanie assured me that if I take it first thing in the morning, and don't eat breakfast for an hour after, it should be no problem. She thinks I should do this. That's good enough for me.

Toward the end of our conversation today, I asked my doctor a couple of questions. First, I wanted a number from him. Not a life expectancy number, but an onset of symptoms number. How much longer can I expect to feel good? He said six months after treatment stops working, he'd expect me to start showing symptoms. Treatment has already stopped working. He doesn't expect what we're starting now to add much time to that number.

Lupron alone worked for ten months. Lupron plus Xtandi worked for six. There's always a law of diminishing returns with these things, so let's say Lupron plus Zytiga works for four months. That would give me four additional months, so ten months before symptoms start to set in. But as fast-moving as this disease is, it could be less time than that.

What would the first symptoms be? Most likely, uncontrollable weight loss, hair loss, and weakness. Gaunt Cancer Guy will be in the house. Then pain.

I'm not the first guy to resist chemo when I have no symptoms. Many react that way. Why would I make myself feel bad when I feel good? Especially when feeling bad won't cure me or significantly extend my life? Often, guys who have this attitude change their minds and start with chemo once symptoms start. But I don't believe I'll do that. I told my oncologist that when symptoms start in earnest, I will stop treating my cancer and go with pain management alone.

Many guys, when they decide to stop treating their cancer, do so because they want to put cancer out of their minds and just live life as long as they can. I congratulate my brothers who are able to do this, but that's not my calling. My calling is to bear witness to what it's like to die of this disease. It's to bear witness to God's goodness to me during this time. To bear witness to what love can do.

I also asked him if he will still be my oncologist when I decide to stop treatment. He said yes, but his role will be secondary at that point. I'll be in Hospice care.

While this news was in the works, God was working behind the scenes. For weeks, he nudged a man I've never met to bless us in the best way possible, at the exact right time.

I've talked in this blog many times about my favorite musician, Neal Morse. His music has been an indescribable blessing to me since my diagnosis. Neal and his band hold an annual festival called Morsefest at his church in the Nashville, Tennessee area. It's a whole weekend of concerts and events, all of it Neal Morse music. It's my ultimate bucket list item.

Last week, a young woman asked a group of Neal Morse fans if she should go to Morsefest this year or save her money. I commented that she should go if she can, and that I'd give anything to be able to go. I said I felt like this year is probably my last chance. Was that an offhand comment or a cry for help? I'll never tell. But I made that comment days before I got the news that I should expect symptoms in a matter of months. It really does seem like this year is my last chance.

So God impressed on a friend that my wife and I should be at Morsefest this year. We've never met personally, only in the Neal Morse Forum on Facebook. He reads this blog. He messaged me recently about this, and he and the moderators of that forum set up a GoFundMe campaign to raise money for us to go. To pay for our tickets, airfare, car and hotel. Today, the first day of the campaign, we exceeded our goal. We are going to Morsefest.

So instead of crying about the news we got from the doctor today, we've been crying tears of joy over the kindness of friends and the goodness of God. God orchestrated this so we'd get this amazing news the same day we got such bad news. It was Providence. And if God wants us there so much, it's because he's going to do something amazing. Mark my words.

I may not have that many more days in my life, but I have life in my days. I still have things I feel called to do, and things I'm passionate about. I'll do all of them for as long as I can, and keep telling my story for as long as God grants me breath. He's keeping me upright for a reason. He won't let me fall until he's ready to catch me. #waroncancer #bearingwitness

Friday, August 4, 2017

The Result

My new PSA score came in this morning. The experiment was not a success. A month ago, my PSA was 1.41, which was up from .98 two weeks prior, and .35 a month before that. After one month of being off Xtandi, my PSA is 3.72. My cancer continues to grow. It doesn't look like there's anything that can stop it now.

For the uninitiated, the "experiment" I speak of was trying 1,000 milligrams per day of an ultra-pure version of cannabis oil as my only treatment, other than the Lupron that's still in my system from my last shot three months ago. My oncologist agreed to this experiment, ordering a baseline PSA test to begin. But the experiment was flawed due to the fact that I couldn't get the oil in a timely enough manner to actually dose at the level I needed to every day. I missed about a week of doses during the last month.

But honestly, I didn't really expect this treatment alone to keep my cancer under control, much less kill it. I just wanted to try and see if it made a difference. It appears that the only difference it makes is help with pain and sleep, at least for me. As far as I'm concerned, that's reason enough to do it right there. So I'll keep taking it, and keep getting tested. Maybe, over time, it will show some measurable benefit.

Cannabis oil helps many people, and has cured many of cancer and other diseases. But my cancer seems to shrug it off like it has everything else we've thrown at it. I have no reason to believe that any future treatment will fare any better against it.

We'll see if there are any worthy contenders to go up against this juggernaut when I have a consultation about potential clinical trials at the local university hospital on Monday. As I've said in past posts, I'll be very judicious about choosing any trial I might be a candidate for. I don't want to do anything with adverse side effects, or where I have a 50/50 chance of being in the "old treatment" group or the placebo group. There may not be a trial that I'm a candidate for anyway. There wasn't last time my oncologist checked, which he does regularly.

It may seem to you like I have a cavalier attitude about this. You may be thinking that I should be willing to take more risks given my situation. I'm sure that's what many of you would do. But because I still feel good, I'm reluctant to do any treatment that will make me feel bad. I want to keep doing the things that give me joy for as long as I can.

Here's the bottom line. I am incurable. My disease is terminal and very aggressive. At some point, I will lose my quality of life, either from treatment or cancer. As long as I have no symptoms, why would I want to make myself feel terrible and put myself on the sidelines sooner than I have to? It would be one thing if there was a good possibility of a cure, or even significant extension of life. But there isn't. A few additional months is all any treatment out there can promise me. That I know of, anyway.

If there's a clinical trial that has minimal side effects and still allows me to do the things that are important to me, I'll probably do it. But I have little or no confidence that this dragon can be slain by any device of modern medicine, or that it can even be kept at bay for long.

Cancer is a terrible thing, and the particular flavor I got seems nastier than most. But at the same time, I'll admit I'm a little in awe of this organism in my body that seems invulnerable and unstoppable. It's like the tide. You can't hold it back. All you can do is try to get to high ground. That's what I seem to be running out of. High ground.

I'm glad I got the news this morning, before I began rehearsing with the kids I've been coaching for our summer show on Sunday. Doing what I love. If I hadn't, I'd have been checking my email all day to see my result. The kids might have noticed a change in my mood when I saw it. This way, I had a chance to digest it before rehearsal started.

I'm doing OK. Thanks for asking. I expected this result. God is still good, and I am still his servant. On Monday, I'll find out if there are better options for me than what my oncologist offers. If not, it will make this an easy decision. #waroncancer #bearingwitness

Wednesday, August 2, 2017

The Home Stretch

A major event in our lives - my wife's and mine, I mean - is now past. Our 40th anniversary party was a great success. We had a great turnout, and saw many wonderful friends. We had lots of help, and lots of food and music. Friends came from near and far. We felt very loved.

Now the guests have gone home, and the decorations are put away, never to be used again. That was our last party. We don't have the energy or the time to throw another one. We're rounding the final turn, and headed for the home stretch.

I went to my oncologist's office today to get a blood draw for my next PSA test. I know I've said that past tests would determine a lot, and it's always true. It's true this time too. This test will show if the "experiment" we tried going back on full dosing of cannabis oil suppostories for a month made a difference. But the experiment is flawed, since I couldn't actually get enough oil to do that. In the last month, I've missed about a week of dosing due to not being able to get oil in a timely manner. So I'm afraid these results won't really show if it would have been effective.

But there were some good things about my visit to the oncology office today. The first is the fact that I was still able to take the stairs. Every time I go there, I take the stairs rather than the elevator. I do that in any office building where it’s practical to do so. It’s something I’ve done for years just for fitness. But now, it’s just because I can. In both the parking garage and the hospital, I take the stairs. Every time. I make a point of it. And every time, I see people who can no longer take the stairs. They take the elevator, not because they’re lazy, but because they’re unable to negotiate stairs.

Every time I walk past those people waiting at the elevator on my way to the stairs, I wonder how much longer it will be before I can no longer do that. I know that day is coming. But it’s not here yet. Until then, I’m still taking the stairs.

The second good thing about my visit is that they got me in really fast, like they always do. I signed in at the front desk, where the receptionist called me by name. I love that. I sat down in the waiting area, and before I could even complete my "check in" on Facebook, my name was called. I had to wait until after the blood draw to finish it! I teased the MA who drew my blood that medical offices are supposed to keep you waiting. That rarely happens at this office. Just one more reason to love my team.

I always used to hate going to hospitals. But I love going in to my oncologist's office, which is located in a hospital. It's because I love the people there. It seems strange to say I love going to see a cancer doctor, but I do. Whether I see the doctor or not. Today it was just an assistant taking blood, but I was glad to be there.

If my PSA goes up as expected, there will be some difficult choices to make soon, unless a promising clinical trial is found for me. My consultation about that is on Monday. Then I'll see my oncologist to discuss all of this on Tuesday. Any decisions regarding treatment will be made by my wife and me. It will be based on our own beliefs and the advice of medical professionals that we trust. You may not like our choice, but I hope you'll support it.

Of course, if my PSA goes down, all bets are off. I'll probably stay on that treatment for life, and ultimately do that alone as a treatment for my cancer. But I feel like that's a long shot.

My weight is trending down again. I'm doing what I can to push it back up, but recent events have made it difficult to feel like eating. I'll bounce back eventually. I always do. How long will I be able to say that?

When I talk about being on the home stretch, I don't mean I think I'm going to die anytime soon. I'm talking about the final phase of treatment. I'm also talking about the last chapter of my life on earth, whether that amounts to months or years. Our last party is behind us, and I'm about halfway through selling my recording gear. I'm now collecting my Social Security retirement benefits. For the rest of my time here, I'll focus on being a husband, a friend, a mentor, and an author. And an ice cream maker! There is still lots to do, and I'll keep doing all of it for as long as I can.

Anybody who thinks I'll just lay down and die because I get bad news from the doctor doesn't know me very well. I'm having too much fun. I'll keep doing what I love until my illness forces me to the sidelines.

I'll post again when I get my PSA result, probably on Friday. If there's enough to fill a whole post from my clinical trial consultation on Monday, I'll post about that Monday night. If not, it will be a combined post on Tuesday about both consultations, and our treatment decision. It's a week of big news. I'm more grateful than I can say that all of you are here with me.

I may be rounding the final turn, but like in the picture at the top of this post, I can't see the finish line yet. I don't think I will as long as I can still take the stairs. #waroncancer #bearingwitness