Monday, August 28, 2017

The Least Depressed Terminally Ill Person You Know

First of all, I want to thank my friend Alan Cox for the above image. He gave it to me months ago to use in this blog, but this is the first post I thought was a good fit for it. Thanks for all your kindness to me, Alan.

Someone told me they thought they saw signs of depression in my last post. I assured her that I've been in therapy for sixteen months, and the subject of depression has never come up. I promised her that I'm the least depressed terminally ill person she knows. When I told my therapist this, she laughed out loud and agreed with me. I should be depressed, but I'm not. I'm having too much fun. I have too much purpose in my life to be depressed.

Now that our big anniversary celebration is past, my wife and I have settled into a comfortable retirement routine. We walk our dog. We go to our favorite spot by a nearby reservoir. We go out to eat. We hang out on our patio. We go to church. We see our friends. Serious topics of conversation come up frequently, and when they do, we talk about them honestly and realistically. But most of the time, we're just doing our thing like we've always done.

This Thursday, the two of us will travel to Nashville, Tennessee to attend a two day festival with my favorite rock star, Neal Morse, and his band, The Neal Morse Band. I told you the story of how this incredible blessing fell into our laps in my post The Conclusion. If we get to meet the guys in the band face to face again, this time, most of them will know who I am! We'll meet new friends from across the world, and thank those responsible for making this happen for us. At the worship service on Sunday, the whole crowd will pray for us and with us. Yes, this rock festival ends with a worship service! Only at Morsefest. I can't think of another musical artist whose fans would do something like this for one of their own. What a blessing.

This was my only bucket list item. If someone had asked what one thing I wanted to do before I die, I'd have said go to Morsefest. And God granted it, just like that. Depressed? On the contrary, I'm walking on air. Of course, I will blog about the entire thing. I plan to post about it three times, once for each day. This is a major event in the last season of my life. I will not fail to bear witness to it.

It's also an unexpected out of town trip, all expenses paid, for the two of us. It's just the kind of thing retired couples do. They travel, don't they? But we don't have the money for that kind of retirement. So God provided again, not by meeting a need, but by granting a wish. He is so good.

I said at the top that I have too much purpose in my life to be depressed. I am doing something right now that is an immeasurable blessing to me because of the purpose it gives me. It's kept me involved in things I thought I was done with, and given me great joy. It's crazy, but I'm in a band again. Never thought I'd be in another band. Except for my friend Todd and me, the band consists of teenagers, ages 16 to 19. Definitely never thought that would happen. If you're wondering if it looks weird having two old guys in a teenage band, the answer is yes.

That's not the best part, though. I'm teaching them songwriting. We began work on our first original song last week, and I hope to finish it this week. The day after we started on it, I got inspired and began working out the arrangement and song form in my head. Our lead singer, who I call my protege, is working on lyrics and fleshing out the song as we speak. The lyrical concept for the song is hers. I'm very excited to hear the finished song.

I never thought I'd do that again; work on a new song idea I'm really excited about. It's a feeling that's impossible to describe. You only know it if you've experienced it. But even that isn't the best part for me. It's fun and exciting, but not where my sense of purpose is. I find purpose in passing on the knowledge I've gained over the years to these kids. Having young people who want to learn from me gives me purpose. Feeling like I can pass something on to the next generation gives me purpose.

This is especially true of my protege. She absorbs everything I say like a sponge and puts it in into practice. I can't tell you what it means to have someone as young, talented, and driven as she is who wants to learn as much as she can from me, and wants to make me proud. I never thought I'd reach this stage of my life and have such an eager pupil. Especially one who will far surpass me, as I believe she will. I hope you have someone like that who wants to learn from you when you're at this stage of life. I hope you have this much purpose.

I find purpose in writing, as you all know. Writing music, lyrics, and this blog. This blog most of all. I've begun the work of turning it into a book, and I can feel the clock ticking. If my doctor is right, I'd better get this book done, and fast. This is a job that I don't want anyone else to do. I don't want someone else to decide what parts of this blog make it into the book, and what material should be added. I know what I want it to be.

It's my intention to keep writing for as long as possible. Ideally, I'd like to write something on my last day and have it posted to this blog. Maybe just a paragraph. Maybe just a sentence. But something. By then, hopefully, the rest of the book will be ready to go in its template, the artwork will be done, and all my wife has to do is plug in the last few posts and publish. I've asked my therapist to write the afterword. I'll never see it published or hold a copy of the book in my hands, but only because I must bear witness right until the end if I can. It's my purpose.

This means I may have to refuse pain medication in order to remain lucid. It's more important to me to be able to write and interact with my loved ones who visit me than it is to feel no pain. I'd rather know that someone is in the room with me and be able to express myself than be comfortable. It's my sincere hope that the cannabis oil I'm using will help with that. I am able to remain lucid and write with that in my system. I doubt that's true of morphine.

This is a recent decision. It was informed by a visit to a friend's hospice bedside. He never knew I was there. I don't want that to happen to me, no matter how much pain I'm in.

Of course, I reserve the right to change my mind about that. It's pretty easy for me to say that now. But I do mean it. Anyone who knows me since I got cancer knows that what drives me is writing and being with my loved ones. If I can't do either of those, I have no purpose.

And while we're on cheerful topics, I've also begun working on my memorial service. I have the slide show almost finished. I'm doing it because I don't want anyone else to decide what pictures of me to show! Not that I'm a control freak or anything... I know who I want to speak and who I want to sing. There will be a hilarious career retrospective video showing many of the parodies I've done over the years. I made my living in comedy, so my service will be funny.

I have three people I'd like to sing. I know what songs I want them to sing. I've already asked one person. She agreed. She'll sing the first song I ever heard her sing. The song that led to our friendship. I'll talk to the others soon. They are also singers of great importance to me, and all three will move you with the songs they sing. I just hope I can get all three.

I won't be there, obviously, but I will make an appearance in a video statement. Just a brief message to those in attendance. I have the last line of my speech already written. "I'll close by saying this. Men, get your PSA checked. Let me put it this way. If you don't wanna be the guy in the jar, get your PSA checked." Maybe that will get their attention.

I'm sure reading about how I'm thinking about pain management in my final days and planning my memorial service makes you sad, and I'm sorry about that. But it doesn't make me sad at all. All of these things are part of my purpose; to mentor and bear witness, to get my ducks in a row, to love and be loved. My days are full and so is my heart.

I will admit that I still dread taking Zytiga and its accompanying steroid. I had a random flash of anger last Friday that could have been from prednisone or hormones, or just heartsickness because I'm not following my heart in regard to my meds. But I made a promise, and I'm still not ready to call Hospice. So I'm back to taking 5-HTP to help keep me calm. That way, I can get through the rest of the time I'll spend on this stuff.

But none of that decreases my joy or sense of purpose. I may be in a bad mood sometimes because I hate my pills, but if that's the worst thing I'm going through right now, I am truly blessed. Many in my shoes are much worse off than I am. I won't allow chemically-induced mood swings to spoil our retirement, or my joy in mentoring and telling my story.

Sometimes I write posts that come off as very negative. I'm struggling over something, so I work it out in my head by writing. And there's no getting around it, this blog is getting very serious. We're in serious times. But I am not depressed, because I have a sense of purpose. My sense of purpose makes me the least depressed terminally ill person you know. #waroncancer #bearingwitness

Thursday, August 24, 2017

Not Ready For Hospice Yet

Before I get to my topic, here is the news of the day. I had an MRI of my left shoulder done yesterday morning to determine if cancer or tendonitis are causing the pain I've been having there for about a year. You may remember that this was the same area where metastasis was thought to be found when I was first diagnosed. An MRI of that shoulder in early 2016 showed this impressive lesion:

But later, after much examination and consultation, it was decided that what was found was probably not cancer. Then, about a year ago, that shoulder started to hurt. A lot. So I wanted to see if it could be treated. If it's tendonitis, I can get a steroid shot for it. But there was a real chance it was cancer, given how far the cancer has spread in my bones. So another MRI was ordered, and I got the results back today. It's good news.

The MRI showed no cancer in the area, and no ligament tears or anything that would require surgery. I can go ahead and get a steroid shot for the pain. I have that appointment on Monday morning. So that's a relief. Literally.

Here is the other news I have to tell you. I've decided that, despite what my heart tells me, I will continue taking Zytiga and prednisone for at least three more weeks, until my next PSA test. There were two deciding factors. First, someone very important wants me to. Someone who has the only deciding vote besides me. I'm not the only one who is affected by this, and I've promised I'll do whatever she wants me to do to stay here for her for as long as possible. She doesn't want me to do chemo, but she does want me to do this. She'll support whatever I decide, but I made her a promise shortly after I was diagnosed. I intend to keep that promise.

The other reason is there are no more treatments I will accept after this one. If I stop taking Zytiga, I will no longer be treating my disease, other than one more Lupron shot, which I'll get in September. The last time I saw my oncologist, I asked him about what happens when I decide to stop treatment. He said the day I decide that, I need to set up an account with Hospice right away. If I had decided not to take my pills this morning, I would have had to make that call today. I'm not ready to call Hospice.

Hospice does not necessarily mean you're on your death bed. That's the mental image we get, but hospice is much more than that. Merriam-Webster defines hospice as "a program designed to provide palliative care and emotional support to the terminally ill in a home or homelike setting so that quality of life is maintained and family members may be active participants in care; also :  a facility that provides such a program."

That's what I will need. I'm terminally ill, I want to stay at home, and I want my quality of life maintained for as long as possible. That's what hospice will give me when I need it.

There's a difference between palliative care and hospice care. I've been in palliative care from the beginning of this. At no point was a cure expected or offered. Each medical treatment was merely a delaying tactic. But my disease was being treated. Not in a curative way, but it's been treated nonetheless.

Hospice care focuses on comfort, pain management, and emotional support. They stop treating your disease, and just try to keep you comfortable. It can be done at home, and I very much hope to stay in my home right till the end. But for now, I still have no symptoms. No pain at all except for my stupid left shoulder.

So why do I need an account with Hospice? I assume it's because it takes time for them to line up the proper care for you, and in my case, things could happen very quickly once I stop treatment. So I need to set things up ahead of time so it's there when I need it. But that's a hard call to make when you still feel fine.

If my PSA goes down in September, I'll keep taking those accursed Zytiga pills until they stop working. I expect that if it works at all, it won't work for long. A few months is all. At that point, I'll have to call Hospice. If my PSA rises again in three weeks, it will be time to make that call then. But not today. I'm not ready for Hospice yet. But I will have to be ready soon. #waroncancer #bearingwitness

Tuesday, August 22, 2017

Ignoring My Heart

This was almost an eclipse post. I thought seriously about writing a blog post titled The Path Of Totality. I love that phrase. The idea was, the shadow of cancer is passing over me, and it will completely engulf me because I'm in The Path Of Totality. But even when it does, my corona will burn all the brighter. Or some poetic crap like that. It would have been very beautiful, but instead, you get this.

Since I was diagnosed two years ago, I have done two things without fail; Follow my doctor's recommendations and follow my heart. Until now, there has been no conflict between the two. But now there is. For the first time, I'm neither following my doctor's recommendation nor following my heart. And I don't like it one bit.

I've always been big on following my heart. I wrote a whole post about it a while back. But it's harder to do that now than it used to be, now that we're down to the last treatment.

Long-time readers know well how I complained about Lupron, especially for the six months after my first shot. Much of that was truly hellish, for me and those closest to me. But my second shot wasn't so traumatic because of one very talented nurse, and my body got used to Lupron. And though I've dreaded it in many ways, I've never felt my heart tell me not to get another Lupron shot.

When Lupron stopped controlling my cancer, we added Xtandi, another hormone treatment. I often described those pills here as "horse pills." They were big, and for some, I'm sure they are hard to swallow. But I had no problem taking Xtandi. I swallowed them easily, and it never caused me any side effects. I could take it with or without food. It was very low maintenance. My heart never raised any objection about that treatment, either. But it stopped working too.

So now I'm on Zytiga, another hormone treatment. The last one. I have to take this drug on an empty stomach. I also have to take Prednisone along with it, only that has to be taken with food, twice a day. So there's this whole schedule that goes with Zytiga. I don't eat on a normal schedule, which makes it hard to remember to take the Prednisone.

I hate Zytiga. I hate taking it. I hate the way it tastes, and the aftertaste it leaves. I hate the way it makes me feel, though my side effects are mild. I hate the very idea of it. I hate the fact that I have to take it on an empty stomach, then feel nauseous for an hour afterward until I can eat something. And I swear, it makes me feel stupid. During that first hour after taking those pills on an empty stomach, it's like my synapses stop firing like they're supposed to. I've instructed my wife to watch me closely and make sure I seem to have all of my mental faculties at all times. Of course, many would say I've never had my mental faculties, but that's not relevant to our discussion.

There's also the fact that I'm not allowed to touch the pills. I'm supposed to swallow them, but I can't touch them. Moms, imagine telling your kids, "Don't touch that, but it's okay to put it in your mouth." That's what I'm taking every morning. I have to take the pills by shaking them into the bottle cap, then tossing them into my mouth from there. Maybe it's something to do with the oils in our skin making the pills less effective. But it creeps me out. And let's not forget the warning to pregnant women not to touch the pills without gloves. A friend asked me why that is, and I said it's because it's poison. Maybe it's because it's hormone treatment, and it could harm a baby's development by messing up a pregnant woman's hormones. Or maybe it's just poison.

I never once felt this way about Xtandi. I would happily have stayed on that for years. But Zytiga makes my skin crawl for reasons I can't explain. If you read my post Throwing Stuff At The Wall, you know that I felt a strong resistance to starting it. Now, after having been on it for a week and a half or so, I don't feel any better about it.

So why do I keep taking it? For the possibility of a few more months without symptoms. But that's all it is, a possibility. No one can guarantee anything. Both oncologists I consulted about it are pessimistic about how much it will help, following right on the heels of Xtandi. But it's all they can offer me except chemo and additional Lupron shots.

I'll get one more shot, but no chemo. My heart is clear on that. My thought going into this was I'd take Zytiga for as long as it drove my PSA down. I get my next labs done in mid-September. If my PSA is going back down after that test, we'll know it's effective, and I'll feel obligated to keep taking it, even though it makes my heart sick to do it.

But I do feel obligated. Obligated to my loved ones, and to many who read this blog who would feel like I was "giving up" - a term I despise - if I decided to follow my heart in this matter.

I've never gone wrong following my heart, but I've met disaster many times by ignoring it. I honestly don't know if I can keep taking Zytiga if I keep feeling this way about it. It feels like my heart or my body are trying to tell me something. It's not a God thing. It's just an aversion I can't explain.

I've felt this way since before I took my first Zytiga pill, and I still feel the same way. Following my doctor's advice is no longer an option, since he wants me to do chemo. Can I ignore both my doctor and my heart? I don't think I can.

Of course, if you read this blog with any regularity, you know that I don't believe medication is what's keeping me upright and symptom free. It's clear to me that God is doing that, not treatment. He's giving me this time, and I'm trying to use it the best way I know how. If he has a job for me to do, (or two or three) I believe he'll enable me to do those things. He determines the length of my days. And no matter what anyone does, those days will be numbered in months, not years. Because I am in the path of totality. As long as I'm on this path, I have to listen to my heart.

When Heather calls from the pharmacy to ask if she should send the next bottle, I honestly don't know what I'll tell her. There was never any hesitation when she asked about sending Xtandi. Now every time she calls it will be an existential crisis.

From my post Following My Heart, written April 6th, 2016:

Have you ever been there? Everyone thinks you should go in one direction, but you strongly feel you should go the less safe route, for reasons you can't explain? If you've ever followed your heart when many others were shaking their head, you know what I mean. But that's how I've lived my life, and I can't stop now.

This approach will also apply to my cancer treatment. I'll listen to all of the smart people, and do my research, but in the end, I must follow my heart. Even if it means going home earlier than you might want. Nobody likes it when their friends leave the party, but we all have to go home sometime.

That pretty much sums it up. If I decide I want to stop taking Zytiga, I'll talk to my doctor and nurse first. I won't just stop. I'll also keep you informed about everything, like I always do. And I promise, next time I'll have something more inspiring. Some poetic crap. Right now, all I know is that when I think about taking either one of the pills I'm taking, I want to shudder. And when I think about stopping, I'm filled with relief. The question is, am I prepared to keep feeling this way for the possibility of a few more months? Do I even believe it will give me that? Is it time to do what I've wanted to do from the beginning of this, which is just trust God? I know that would make my heart happy. But it would make a lot of people sad. And mad.

I'm sure I'll get lots of opinions about this. Nothing is set in stone, but my intention is to continue taking Zytiga, despite my reservations, at least until my next PSA test. My doctor warns that it might take a couple of months to see an effect, but I'm not inclined to give this stuff a two month trial. It gets one month to prove to me that it's worth taking. Unless my heart just won't leave me alone until I stop, which it has been known to do. If that happens, I have to stop ignoring my heart. #waroncancer #bearingwitness

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 if 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