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.

Pros:
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.

Cons:
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

Thursday, July 27, 2017

Providence, Part Two


The Lord is my shepherd;
    I have all that I need. (Psalm 23:1)

I have three more stories of God's Providence to tell. If you haven't read Providence, Part One, please read that first. I explain what I mean by the term providence, and tell two remarkable stories about how God has provided for me during my cancer journey, and blessed others through me. The ones I'll share in this post are just as amazing, at least to me.

But first, I need to acknowledge that I am well aware of how blessed I am. I received a message from someone yesterday who has endured one terrible trial after another and feels utterly alone. I also received heartbreaking news from friends in my journey. Why should I be so blessed, even in my terminal condition, in comparison to others who suffer so? I don't know why. But I know I won't escape it forever. Suffering comes to all of us.

But that just makes the blessings all the sweeter. Which brings me back to my narrative. In January of 2016, my health insurance changed. The urologist who diagnosed me didn't take my new insurance. No great loss. I didn't like him much anyway. I also didn't like the way his nurse gave me my first Lupron shot. It was very painful, with effects that didn't fade for days. I decided I wanted to find an oncologist to treat my cancer, not a urologist. An actual cancer doctor.

I got a referral from my primary care doctor for an oncologist in his group. I liked him from the moment I met him. He's a no-nonsense, just-give-me-the-facts kind of guy, which is what I want from a doctor. He never pushes one treatment over another on me. He gives me all of my options, and respects my choices and beliefs. After a year and a half in his care, I've learned that all of the staff there reflect the tone set by the oncologists; knowledgable, open minded, caring, and compassionate. I love my team. I'm so blessed to have found them. It was no accident that I did.

But as in my last story, there is one who is special. My nurse, Melanie. This woman is an angel sent straight from heaven. I tell the amusing story of how we met in one of my most read posts, Melanie And Me. They sent her to me because I had been so traumatized by the Lupron shot given by Nurse Ratched at my old urologist's office. They said they'd give me their best shot giver. I was so scared waiting for that shot, I was freaking out. 

Melanie came in and put me completely at ease. When she gave me the shot, I couldn't even feel it. I finally understood a truth that many knew before me; The painfulness of a shot is in direct proportion to the skill of the person giving it.

When it came time for my next shot, I found out that Melanie wasn't scheduled to work that day. I insisted that it had to be her, or I wasn't getting the shot. They called her, and she remembered me, and agreed to come in on her day off, just for me. To thank her, I gave her one of my cross pendants. That's the day we became friends. Now, we are so much more. It's my desire to be in her care for the rest of my life. I won't always need an oncologist, but I'll always need a nurse. There's only one nurse I want taking care of me.

How did I manage to find such a perfect situation with unexpected blessings? I didn't do any research. I just followed my doctor's referral. So many of my brothers have doctors they don't trust, and medical staff who seem to have no compassion at all. Did I get lucky? I don't think so. I think it was Providence. God provided for me once again.

My cup overflows with blessings. (Psalm 23:5c)

In the summer of 2016, I was feeling sorry for myself. Lupron had sent my emotions out of control, and I was under a dark cloud a lot of the time. Summer schedules made spending time with loved ones difficult, if not impossible. I was moping around the house one day, unsure what to do with myself. I asked myself what could happen that could make me feel better. Almost immediately, the answer came to me.

Our closest friend Nikki had moved to California in 2001. We saw each other once a year, around Christmas. But there had been an enormous hole in our lives and hearts since she moved. It's not a stretch to say that my wife and I love her more than anyone else in the world. That last time we'd seen her, the previous Christmas, I basically begged her to move back. We needed her here. Especially now. But she gave no indication that might be a possibility.

As I drowned in self pity that summer day, asking myself what could make things better, I immediately thought, "I know! If Nikki called and said she was moving back to Colorado, that would make everything better."


It seemed like a total pipe dream at the time. Nikki had a life that she loved in SoCal. A good job, great friends, and a strong church. And Disneyland. She's a Disneyland geek. But once that thought occurred to me, within the hour, Nikki called to tell me she was moving back. She had a job offer here. Nothing was final, and she'd have to come out for an interview, but it looked good.

A few months later, she was driving back home to stay. Having Nikki here has made all the difference. We see her almost every week. She's here for us. And when the time comes, I know she'll be here for my wife. When my wife sells this house and moves into her own place, Nikki is one of a handful of people that I know I can count on to be there for her, hang out with her, spend time with her, and never, ever fail to support her and be her friend. I can't tell you what that means to me. She's quite simply the best friend we've ever had. She's family. And God brought her back home just when we needed her the most. That's Providence, my friends. You can't tell me it's not. 

Yea, though I walk through the valley of the shadow of death,
I will fear no evil;
 
For You are with me (Psalm 23:4)

One more thing. The most miraculous thing of all. I am Stage 4, with cancer all through my spine, and in my hip bone and sacrum. But I can't feel any of it. I don't feel a thing, when others with less cancer in their bones than I have are in agony. They're having spot radiation treatments to try to relieve the pain. They're on drugs like morphine and Oxycontin. I don't even take ibuprofen. Other than the effects of hormone treatment, I feel completely normal.

No one can convince me that isn't a God thing. I'm in no pain because God is providing me with this time. There are things he wants me to do, tasks he wants me to complete. Once I've run the race that he has set before me, his hand of protection will be lifted, and it will be a short road home for me. Don't ask me how I know this. I just do. None of us could ask for a better transition than that. And that's what it will be, a transition. Not an end.

God's Providence for all of us is to be born, to live, and to die. I am no exception to that rule. I've gladly and gratefully accepted his blessings for me while I live. I will gladly answer his call when he welcomes me home. It's a home that he has built for me. He's provided it for me. Even in the next life, it's all about Providence. #waroncancer #bearingwitness

Surely your goodness and unfailing love will pursue me
    all the days of my life,
and I will live in the house of the Lord
forever. (Psalm 23:6)

Tuesday, July 25, 2017

Providence, Part One



We can make our plans, 
    but the Lord determines our steps. Proverbs 16:9 (NLT)

This is a God post. I haven't written one of these in a while. But there will be no preaching. Only testimonies of how God's Providence has been made real to me throughout my journey. Time after time I've seen his hand at work. You may not see it that way, but it's obvious to me.

Let me just say to start that I am not one who believes in fate. I don't believe that "everything happens for a reason." I think some things just happen. Like cancer. I don't believe God gives anyone cancer, or helps anyone win the lottery, or decides what I should have for lunch tomorrow. But I do believe God has a plan for us, and he provides for us along our way. I also believe that the closer we draw to him, the more clearly we can see him working for our good. That certainly happened for me.

I have so much to tell you, I can't fit it into one post. So this one will be in two parts. I have five stories to tell in chronological order, and I'll only get to two of them in this post. But they're amazing.

The word providence is often used to mean fate or destiny, but that's not what it means. According to Dictionary.com, one of the definitions of providence is a manifestation of divine care or direction. That's what I mean by Providence. Manifestations of God's divine care and direction. For me, they have been many, and they have been almost constant since I was diagnosed. Actually, it's been going on my whole life, but most of the time, I was too spiritually dense to see it.

The word providence begins with the word provide. It's not about law or predestination. It's about provision and guidance. I'm not talking about manna from heaven or pillars of fire and cloud. Most of the time, God's Providence is shown through people. That's where I'll begin.

Let's start at the very beginning. A very good place to start, or so I'm told. Let's start even before I was diagnosed. The day I got the blood draw for the PSA test that changed my life forever. April 3rd, 2015. The blood draw was in the morning. It was part of my regular checkup, albeit my first one in several years, and with a new doctor. I had no doubt I'd be in perfect health. Always had been. But God knew better.

That afternoon, my wife and I ate on the patio at a favorite place close to home. We brought our dog, as usual. We sat at a table next to a young couple who also had a dog. A Boston terrier. Or maybe we got there first and they sat next to us. I don't remember. We exchanged friendly banter between tables about our dogs. After a while, they came up and introduced themselves. Their names are Derek and Amber. I've talked about them far more in this blog than they are comfortable with, and I'm about to make it worse. Sorry, guys. I can't help myself. This story still blows my mind. And it's bigger than just the four of us.

When Derek and Amber introduced themselves and we did the same, they sat down at our table. And we've been sitting at the same table ever since. Our friendship has been an immeasurable blessing for the past two years and counting. I've often told them that I believe God put us together at this particular time for a reason. For starters, he knew what a benefit they would be to us at a very difficult time. He also knew the positive influence we would be on them.

But as I said, it's not just about us. When I was diagnosed, I asked Derek if his caregiver could help me. But Derek's caregiver wasn't set up to treat cancer. He did, however, know someone who was. That guy was looking for his first real cancer patient. He wanted to start treating cancer patients with something called Rick Simpson Oil. I became his first patient. He's been my caregiver ever since. But not just mine.

My caregiver began refining his process. He went beyond Rick Simpson Oil and Full Extract Cannabis Oil, or FECO, and created an ultra-refined version of FECO that he calls Cannabinoid Distillate. He developed the process for making it, and he's now treating many patients with this oil. He's also started a new business making CBD products, also to help people with various ailments, especially dementia and seizures.

I'm sure my caregiver would have eventually found a cancer patient if he hadn't found me. We're pretty easy to find, unfortunately. But he and I found each other at the right time for me, and for him, and for everyone else he is now helping. All because we met Derek and Amber one day. The day I had the PSA test that started all of this trouble. And when I knew I had cancer, Derek knew a guy who knew a guy. And now, many people are being helped that we know nothing about. And we have a priceless friendship to boot. That's what I call Providence.

In November of 2015, I had just gone public with my cancer in October. Lots of our friends and acquaintances still hadn't heard about my diagnosis. I performed at an annual event here in Denver called Prog Fest. I've performed with friends at this event for years. In a way, it was my "coming out party," where many in our circle learned that I had cancer, and that it was serious. It was a very emotional and meaningful night for me.

My friend Todd also performed with a talented group of kids and teenagers that he always manages to field. After the show, I told him I'd like to work with the kids in some way. I knew they already had a vocal coach, so I suggested that I could help with stage presence. I kept bugging him about it until he finally gave me a shot. I worked with the kids for one rehearsal and one show. That was the extent of my stage presence coaching career. But I did meet one very special young singer. More on her later.

In December of 2015, I met Todd's wife Sandi at a Christmas party. Sandi is a therapist, and she helped me a lot with just one conversation. We hit it off, you could say. Three days later, her dad suddenly and unexpectedly passed away. I immediately reached out to her, and we began supporting each other through some terrible times for both of us.

Since then, my friendship with Todd and Sandi has been one of the best parts of my journey. Like Derek and Amber, they are part of my inner circle. Sandi has made frequent appearances in this blog, inspiring several posts. The Gift In The Wound and Sitting In The Mud are two of my favorites. And the musical collaboration Todd and I have had the past year has put making music back in my life just when I'm trying to retire! Our friendship was providential. It was something God provided for all of us, I'm convinced of it.

But back to the story. Still reeling from my diagnosis of aggressive, inoperable prostate cancer, (I wasn't Stage 4 yet - technically) I found it impossible to get music work done. Sandi used her connections to find me a therapist who helped me get past that and much more. But not just any therapist. The exact one I needed. The one who will be my therapist for the rest of my life. Provision.

When rehearsals for the next show were coming up, Todd told me that the vocal coach he'd been working with wasn't available anymore. He asked if I'd be interested. I jumped at the chance, and we've never looked back. Rehearsals are long and taxing, but so much fun. And it's really helped my singing voice. It forces me to warm up and sing a lot regularly. I'm in the best vocal shape now that I've been in years.

And I love those kids. Working with them is rejuvenating. I feel like I'm making a difference. Not just with the singers, but with all of them. But since I work mainly with vocals, it's the singers I've gotten to know best. I want to help them get better, and teach them the job of being a singer in a band. I want to help all of them get to the next level, whatever that means for them.

But there is one I feel a special calling to help as much as I can. I can't give you her name, but you'll all know her name soon. I really believe that. I feel very strongly that one of the things I'm supposed to do with the rest of my time here, however long that is, is help her get started as much as I can. I can't teach her how to become famous. If I knew that, I'd be famous. But I can teach her the job. I can give her the benefit of my experience. I can help get her some exposure. I can and will do those things for as long as I can, or until she doesn't need me anymore. Which I expect to happen at any time. She's already a better singer than I am, in many ways, at age 17.

It's very important to have a purpose, especially when you have a terminal illness. It's very important to make new friends, because when you have cancer, you tend to lose some of the old ones. Can I get an amen? My connection with Todd and Sandi resulted in an abundance of both; friendship and purpose. And my therapist for life. Providence.

I've only scratched the surface. But this post is already too long. Next, I'll tell the amazing story of how our closest friend suddenly reappeared, just when we needed her. I'll talk about finding my medical team, who I love and trust. Priceless and rare, as it turns out. And I'll close with the miraculous lack of pain I experience with cancer ravaging my skeleton. It's one example of God's Providence after another. His provision and guidance. I hope you'll join me for Part Two. #waroncancer #bearingwitness

Look at the birds. They don’t plant or harvest or store food in barns, for your heavenly Father feeds them. And aren’t you far more valuable to him than they are? Matthew 6:26

Friday, July 21, 2017

Crunch Time


I'm feeling pretty overwhelmed right now. My schedule for the next three weeks is ridiculous. Rehearsals, practice, and party planning. Blood tests and consultations. Three weeks from now, two major events long in the works will be behind us. I'll have had my next PSA test, and know if the experiment was a success. I'll know if there's a good clinical trial for me. I'll make major, and perhaps final decisions regarding treatment. But all of those things have to wait. Right now, it's crunch time.

Starting Saturday, three out of four days will be spent in rehearsals. Not every rehearsal takes all day, but they all take 100% of that day's energy. All the spoons in the drawer. Two of the rehearsals are for a performance a week from Saturday, and the other two are for a show two weeks from Sunday. As my friend Todd says, for a guy who's retired from music, I sure am doing a lot of it.

Of course, in addition to rehearsals, there's also a lot of individual practice time. This is especially true this time, because of one particular song. I'm accompanying a soloist singing Leonard Coen's Hallelujah. I'm to accompany her on keyboard. I am not an accompanist, to which my soloist can attest. But I could have made it easier for myself. I could have kept it simple. But then, I'm me. I had to make a big arrangement out of it, complete with a key change on the last verse. I had to vary what I play in each verse to keep it building. I wanted to make it special for the singer I'm accompanying. So it's really hard. For me, anyway. But I'm not gonna water it down. I'm gonna do whatever it takes to make sure it's great. Not for me, for the soloist. If I do my job, everyone will be talking about her, not me. I want to do well for her. So I practice, practice, practice.

After rehearsals Saturday, Monday, Tuesday, and Wednesday, we have one day to get ready for houseguests to arrive on Friday the 28th. Our friends Christopher and Lori Caminiti will be staying with us for the next five days. Our friends Derek and Amber will also stay with us over Saturday night. This is why we have two guest rooms now.

The next day, Saturday, July 29th, my wife and I will celebrate our 40th wedding anniversary with the biggest party we've ever thrown. As of now, our guest list stands at about 70 people. Three bands will play. Of course, I'm in all of them! Which is why I have so many rehearsals.

After the party, we entertain our guests and I have more rehearsals for the summer show with the kids. The day after the Caminitis leave, August 2nd, I have the blood draw for my next PSA test. Then dress rehearsal with the kids on Friday the 4th followed by the show on Sunday the 6th.

I expect to have the results of my PSA test by Friday. I'll probably find out if it's good news or bad during dress rehearsal sometime. If it's good news, I'll tell. If not, I'll keep it to myself until rehearsal is over. Maybe till the show is over.

Monday, August 7th, I have a consultation with a doctor at the local University Hospital about potential clinical trials I might be a candidate for. The next day, August 8th, I meet with my oncologist to discuss all of this and decide where to go from here.

With a schedule like this, there's little room for rest and recovery days. I doubt I'll get one next week at all. But I'm not complaining. I'm thankful that I can still do all of these things. Someone posted a picture of her husband's bone scan on Facebook this past week. It didn't look as bad as mine, but she said her husband is in terrible pain. If I remember correctly, he is on morphine and also has oxycontin (or maybe oxycodone) for "breakthrough pain." And here I am with a spine full of cancer, and with cancer in my hip bone and tailbone, and I don't even need ibuprofen. It's a miracle. No one can convince me otherwise. God is giving me this time. So I'm gonna make the most of it.

That said, can you see why I'm a little overwhelmed? But there isn't one item on this list I'd set aside. Not even what could be a very unpleasant consultation with my oncologist. I can power through for three more weeks. Then, once it's all past and we can exhale, once the shows are over and things are back to normal, once we know for sure what my options for treatment are and what my updated prognosis is, we'll have a much better idea of what our future looks like.

I know three weeks is no time at all. It's gonna fly by. I can't get hung up on outcomes right now. Right now, it's crunch time. #waroncancer #bearingwitness

Saturday, July 15, 2017

Episode 02



Yesterday was two days in one. It started well, but ended very badly. As a result, I'm stuck in bed today when I should be getting things done. I have to take a recovery day when I had no reason to believe I'd need one. That's what happens with this disease. You think you're doing fine, and then WHAM! Not so much.

I started my day yesterday by publishing a blog post that I feel very good about; Questions For My Inner Circle. It addresses an important topic; How my cancer and the way I process it so publicly affects those closest to me. I always feel good when I write a new post, especially when it's received as well as that one was. Patients responded that they need to be more mindful of how their disease affects their loved ones. Wives, daughters and caregivers commented that no one had ever asked how they felt. It made me feel like I'd done the right thing. Always a good feeling.

Later that day, I needed to drive about an hour away from my home to meet my medical marijuana caregiver. I needed more oil for the suppository experiment we're conducting for the next two and a half weeks. The drive took place during rush hour, so I left early, and managed to arrive early. I stopped for a bite to eat while I waited to meet my caregiver.

While I ate, I was scrolling through my Facebook newsfeed, and saw the news that my friend and prostate cancer brother Peter Artiste had passed away the night before. I yelled, "Oh, no!" right out loud in a crowded restaurant. A few people looked at me, but I didn't care. I was devastated. I started crying, and the tears have been close to the surface ever since.

Peter was one of the first friends I made in the online support group I frequent. He was one of the original recipients of one of my cross pendants. He was a sweet, gentle soul who loved to paint. Peter had been in palliative care for some time. He faced his own mortality with a grace that I hope to live up to.

Months ago, Peter posted a cryptic message in the support group, basically saying goodbye. When I read that, I was frantic. I messaged him to find out what was going on. He responded that he was only saying that he wouldn't continue to post in the group. But it made me realize how much his passing would affect me when it happened. And it made me realize that I'll never be done with therapy.

As sad as Peter's passing makes me, it also scares me. He is the first of my brothers to fall since I was diagnosed. The first one to die who I'd made a relationship with in a support group. To me, it feels like the first domino has fallen. How am I going to do this? Keep losing one brother after another until it's my turn? I don't know if I can. I don't know how. That's why I need therapy.

For the rest of the drive, I fought back tears and choked down sobs. I listened again to my favorite album, The Similitude Of A Dream by The Neal Morse Band, and it spoke to me like it has so many times before.

When I arrived home, I collapsed in my wife's arms. She hadn't heard the news about Peter. We consoled each other for a little while, and I went to bed. You'd think the trouble would have stopped there, but no.

At around 2:30 this morning, I was awakened by my dog wanting to be let outside. While I waited for her, I was overcome by another dizzy spell just like the one I described in A Scary Episode. I immediately sat down. By the time the dog was ready to come in, I was unable to stand, lock the back door, or even think. But I remembered the fall I took the last time this happened, so I never tried to stand up again. I slowly crawled back to my bed.

My clothes were completely soaked with sweat, so I had to change before I went back to bed. Once I was on my back, it eventually passed, and I was able to sleep.

The last time this happened, my oncologist determined that it wasn't a heart attack. He thought it was probably a combination of dehydration and some kind of bug I'd picked up on our trip to Mexico. I had been experiencing diarrhea for over a week, so that made sense at the time. But that wasn't true this time around. I was very thirsty last night, and experienced a leg cramp this morning, so dehydration could have played a role, but not like a week of diarrhea would.

Here's the bad part. While this episode was playing out, I remembered my oncologist saying that if it ever happened again, I should get to the ER right away. The one in the same hospital where his office is located, since they have all of my medical records. Did I follow my doctors advice? Nope. It was 2:30 in the morning. I was too tired. I just wanted to go back to sleep. I think he may be upset with me for doing that when I tell him. And I will have to tell him.

This proves the one I experienced before wasn't a one-off. It wasn't a fluke. If it happened twice, it will probably happen a third time. When it does, I need to protect myself, and call 911 so they can try to figure out what's going on. But it's hard to do when I'm in the middle of a spell like that and don't have a phone handy. I turn my iPhone off at night so the sound of it vibrating doesn't wake me up. I don't turn it on and carry it with me every time I need to let the dog out or go to the bathroom in the middle of the night.

Both of the episodes I've had happened during the night, when I was awakened by the dog. I've yet to experience one during the day, while I'm awake. It seems like sleep must have something to do with it. But it's not like standing up too fast. It doesn't hit me until a couple of minutes after I get up. And once it's over, I feel like I've been put through the wringer.

So I'm very shaky, wobbly, and sad today. That's why I'm spending a day in bed that I should be using to prepare for two upcoming shows. I'm recovering from what I'm calling Episode 02, and mourning the loss of my friend and brother.

I may look the same, my friends, but I'm not. Each one of these episodes makes me weaker than I was before. Each loss reminds me of how this will end. If my ending can be like Peter's, I will count myself blessed. He died peacefully, with just a sigh. That's something we can all hope for.

But we can all strive to live like Peter too. Treating others with love and compassion, pursuing our passions, putting out positivity, and surrounding ourselves with loved ones. I choose to live like Peter, and if I'm lucky, I'll get to die like him too. #waroncancer #bearingwitness

Friday, July 14, 2017

Questions For My Inner Circle


I asked a friend last week how she was doing. She answered that she was fine, and mentioned some things that were going on in her life. Then I asked how she was doing with "my story." A look of utter sorrow darkened her face, and her voice trailed off. I let it go at that, but a few days later, with some other close friends, I felt moved to bring the subject up again.

I care about the effect my illness is having on those closest to me. So on Monday night, as we hosted two of our closest friends for dinner, I asked them the same question. How are you processing what's happening to me? What has your journey been like? How do you choose to think about it? Suddenly, it was important to me to know the answers to these questions.

The first one I asked was our friend Deanna. The second was Nikki. Two women I've mentioned many times before in this blog. Both are members of what I call my Inner Circle. My wife and I have been close friends with both of them for at least 25 years.

Deanna started with her typical bluntness. "It sucks," she replied. It sucks having a friend who's gonna die of cancer. Nobody could argue with that.

She added that she can't conceive of a time when I won't be here. She just can't go there, so she tries not to think about it. But then I go and write a blog post and force her to think about it. So she feels the need to take breaks from reading my blog. It's just too much for her. But she always catches up later.

Nikki simply said that it doesn't seem real to her yet. This surprised me a bit, because she's been one of the most realistic of all of our friends regarding my prospects. But at the same time, she said that, since I still look and act like myself, and I can still greet her at the door, and we can still do the things we've always done when we get together, it hasn't hit home for her yet. When I can no longer come to the door when she rings the doorbell, and she has to come sit by my bed for us to visit, then it will all become real. Another loved one who's coping by choosing not to think about it, at least for now.

Then my wife chimed in. She said that, most of the time, she's fine. She's thankful for the time we have now, where I'm the Mark I've always been, and we can still do things we enjoy. But I also learned that she does sometimes allow the reality of all of this to overwhelm her. I've never seen that, so I asked her when that happens. She smiled and said, "When you're not here." She doesn't want to put that on me, so she saves her emotional outbursts for when I'm not around.

Since she's my wife, she doesn't get the luxury of escaping all of this by choosing not to think about it. Not very often, at least. It's too present in our everyday lives. But as much as we can, we go about our days as though nothing has changed.

I felt I should come full circle and give the first friend I asked a chance to give a real answer. She was the only one I asked who didn't know me before I had a terminal illness. For her, my condition has been a given from the start. So she seems more prepared for the eventual outcome than those for whom cancer is a recent development in our relationship.

I'm sure you've noticed that all of the friends I've asked these questions of have been women. My male friends tend not to be that introspective. If we are close, I may ask you these questions. I'll ask my family the next time I talk to them. But my Inner Circle is small. If you're one of those people, you know it, because I've told you. If I haven't asked you these questions yet, it's probably because I think I already know your answer. But it may also be that I don't think we're as close as you think we are. I hate to say that, but it's true.

There is one couple that I feel closer to than just about anyone on earth, but I probably will never ask these questions of them. They've made it very clear to me how they want to handle this, and I will honor their wishes. They are more in the "try not to think about it" camp.

I didn't ask any of my prostate cancer friends. They have their own stuff to deal with, and hopefully, their own inner circle to help them deal with it.

After hearing one after another of my friends say they prefer not to think about my cancer and its inevitable outcome, I understood more clearly the effect this blog must be having on them. They're trying to cope by putting my condition out of their minds as much as they can, and I keep reminding them of it. By doing so, I'm taking away their main coping mechanism. As soon as they manage to get a few days where they don't have to think about my travails too much, up pops another blog post. Another big red sign in front of their face.

I know this blog helps people. I know it helps me. It helps cancer patients and their loved ones not to feel alone. It educates people about what it's like to have this disease. And it's very therapeutic for me. But until Monday night, I didn't understand the effect it was having on those closest to me. My openness about all of this and my attitude about it may be inspiring to you, but it's troubling for those who see me often.

In spite of this, not one of these friends would ever tell me to stop writing it. They keep reading it, even though it causes them pain. They do it because they love and support me. They know it's my passion and my calling. What I write often bothers them, but they keep reading. They keep loving. They keep supporting. That's why they're my Inner Circle.

I hope you have an Inner Circle like I have. Actually, nobody has an Inner Circle like mine. All of these people are freakin' amazing. But your inner circle is going through your tough times along with you. So take a moment to ask them how what you're going through affects them. Ask them how they're processing it. You might be surprised how deeply your difficulty impacts those closest to you. When you're the cancer patient, it tends to be all about you. But it's our Inner Circle who often pays the highest price. #waroncancer #bearingwitness

Saturday, July 8, 2017

Fighting


It's time I talked about this concept of "fighting." A term that's used so often in reference to cancer. I hear it used all the time, not just by people in general, but by the patients themselves, and their loved ones. I understand what is meant by this term, but I can't say I agree with it.

The term "fighting" or "battle" is much better applied to those who are curable through conventional treatment. If you are one of those, God bless you. I wish you the best. If it helps you to frame your approach to cancer as a fight or a battle, that's great for you. But for terminal cases like mine, it doesn't work as well. When you put it that way for us, you're implying that we're in a fight that we can never win.

I've been accused of not "fighting" because I wouldn't pursue a certain treatment or radically change my diet. Or simply because I accept the reality of my situation. I can't tell you how many posts of mine have had comments telling me to keep fighting. Sometimes the comment is simply, "Keep fighting, brother!" As though that's supposed to encourage me. But that's not encouragement. It's cheerleading.

I've written about this subject before, most notably in two posts, Winning and Cancer Peacenik. I'd like to quote a passage from each of these posts to shed more light on how I feel about this. From Winning, posted February 8th, 2016 to my CaringBridge journal, before this blog was launched:

What brought this on today was a comment I heard in church yesterday morning. Someone talked about a cancer patient who had "lost" their battle with cancer. We've all heard that expression many times before, but now it really bothers me.

People talk about dealing with cancer as "fighting." They frame it like you're in a contest, a battle with cancer, and if you win, you "beat" cancer. If you die, you "lost" your battle. If you don't try every treatment out there, you're giving up. I don't hear people talk about any other disease that way.

Let's get two things clear. One, if I'm cured, it won't be because I beat this cancer in my body. I don't have that ability, and neither does anyone else. Except one. If I'm cured, it will be because God healed me. No other reason. It will be a genuine miracle, because that's what it will take. If you've never seen one, hang on. You might see one soon.

But if that doesn't happen, here's the other thing I want to make clear. If the percentages prove true for me, and a miracle cure is not in the cards, don't anyone ever say that I lost my battle with cancer. No one exits this life as a loser.


That's my problem with framing my, or anyone's cancer journey in those terms. You never hear that in regard to any other disease. Here's one example. Let's suppose I got the flu, and never went to the doctor just because I don't like doctors. I figured I'd get over it on my own. Then suppose my flu turned to pneumonia, and I died from pneumonia. Would anyone accuse me of not fighting the flu? If I died of a brain aneurism, would anyone say I "lost my battle" with a brain aneurism? Of course not. It's only with cancer that you were were in a battle, and lost. According to the way we talk about cancer, everyone who dies of it dies a loser. I reject that terminology.

From Cancer Peacenik, posted May 20th, 2016:

If I could give one piece of advice to the loved ones of my fellow cancer patients, it's that if the one you love who has this disease seems at peace with their circumstances, and doesn't want to fight much, please don't think they're giving up. Acceptance is not surrender. It's realism.

Acceptance is not surrender, it's realism. From the day I was told how aggressive my cancer is, and how likely it was that I had microscopic metastasis, I've had an attitude of acceptance about this. Most of those who knew me, including those closest to me, took a long time to come to acceptance. Most of my loved ones, if not all, held out hope that somehow, some way, I would get better. A treatment would be found that would keep me around for a long time. But I always knew. And after seeing how I've responded to treatment so far, now my loved ones get it. I think my last scan results brought it home for many. 

For me, getting poison pumped into my bloodstream in an effort to gain a few more months does not constitute "fighting." It would be throwing away the rest of the time I have feeling good. Another hormone treatment would only make me weaker than I am already, and it's not recommended for me anyway at this point. That's not fighting.

What about special diets for cancer? Why won't I go on a plant-based diet or the Ketogenic diet? Two reasons. One, I'd lose weight on either of those. Keeping enough weight on to be at what my nutritionist calls my "fighting weight" is of paramount importance for me. I prefer to call it my "pageant weight." If there was a skinny old man bod pageant, I'd win it at this weight. But I digress.

The Ketogenic diet is low carb. I need carbs to keep my weight up. My nutritionist tells me I need to always combine carbs with fat to stay at my goal weight. Bread and butter. Cheese and crackers. Cereal and milk. The most important aspect of diet for me is keeping a good BMI. I can't do that on either of those diets.

The other reason, of course, is that it's just too late for diet to make a difference. If you need to, go back to my post The Path Forward and look at the bone scans. Compare the one from last October, when I was first diagnosed Stage 4 to the one from about a week ago. My cancer is advancing fast, and there's nothing any diet can do about it now. Changing to a special diet for cancer wouldn't be fighting, it would be wasted effort.

If fighting means paying for alternative treatments, or traveling for treatment, we can't afford to do that. It's not that I won't fight, it's that I don't have the means to. Also, I am suspicious of any alternative treatment where someone's getting paid. The difference between every other alternative treatment out there - that I know of, anyway - and the cannabis oil treatment I'm on is that, here in Colorado, I could grow my own plants and make my own oil if I chose to. Rick Simpson purposely made his oil easy to make at home so people wouldn't have to pay high prices for this medicine. That's not true of any other alternative treatment that I'm aware of. Depleting our limited financial resources chasing one pipe dream after another would not be fighting. It would be irresponsible.

The picture at the top is pretty accurate in depicting my "battle." My little sledgehammer is not much good against the giant amoeba. One day, I won't be able to lift the hammer anymore, and this will happen.


When it does, please don't say I refused to fight just because I wouldn't pick up the weapon that would poison me as much as the amoeba, or make me so small I couldn't hold any weapons at all.

If you think I'm tipping my hand regarding my upcoming decision should the current experiment fail, you're probably right. You might also be thinking that it's ironic, or even hypocritical of me to end my posts with #waroncancer if I feel this way. I do that in support of the WarOnCancer.com website, of which I'm a member. But my cancer isn't a war. It's not a contest to be won or lost. It's not a boxing match. It's the hand I've been dealt, and I'm gonna play it out, regardless of the outcome.

I know it's hard for many, if not most people to wrap their heads around not wanting to do everything one can to stay on this planet for as long as possible. It's even harder for the loved ones of those who choose to reject or stop treatment. But please remember, these are personal choices, and they're up to the patient. No one else. Also keep in mind that for each of us, there are factors that you know nothing about. You can't project your life onto ours and judge what you think we should do based on your frame of reference.

I've always been more of a lover than a fighter anyway. I may not have as much fight in me as you wish I had, but I've got more love in me than I can hold. That's why I'm always trying to give it away. And the decision I must make soon is all about love. Not about fighting, but about doing what I feel I must for the one I love the most. I choose to make love, not war. Love is way better than fighting. #waroncancer #bearingwitness

Monday, July 3, 2017

Tiny Popsicles, Part Two: The Experiment


I first went public with my use of this alternative treatment for my cancer last December, in a post titled, "Tiny Popsicles." If you haven't read that, and you're unfamiliar with Cannabis Oil treatment for cancer, I highly recommend that you read that post before you read this one. It's very informative, and it's one of my all time most viewed posts. Also one of my funniest.

But I didn't tell the whole story in that post. In this one, I want to give you my entire history with this treatment, and elaborate on the experiment my oncologist and I are conducting for the next month, which I mentioned briefly in my last post, The Path Forward.

I'm not going to try to defend this treatment against any detractors or doubters. If you have a problem with the use of medical marijuana for cancer, it's your problem. And if your bone scan looked like mine, your reservations might disappear in a hurry.

In Colorado, we use a "caregiver" system in which, to get your medical marijuana card, you find someone who is registered with the state as a caregiver. If they decide to take you on, you become listed with the state as caregiver and patient. The caregiver is allowed to grow a certain number of plants per year for you, and is responsible for getting you your medicine.

Shortly after I was diagnosed, a friend who is a medical marijuana user asked his caregiver if he could take me on as a patient. His caregiver was not set up to make the concentrated form that's needed for cancer, but he knew someone who was. The caregiver he knew had started making Rick Simpson Oil, a treatment for cancer that's well known and has had great success in curing many people. But he didn't have a true cancer patient yet. My friend's caregiver introduced me to him, and he's been my caregiver ever since.

As I explained in Tiny Popsicles, the "therapeutic level" to kill cancer cells is 1,000 milligrams per day of THC. THC is the chemical in marijuana that makes you high. It's also the part of the plant that's been shown to kill cancer. That is way too much THC for anyone to try to ingest in one day. You have to ramp up to it to be able to tolerate it, which is what I did. I started with just a small drop about the size of a grain of rice, and worked my way up.

After a few weeks, I was taking five 200 milligram capsules of it per day. 9:00 AM, noon, 3:00 PM, 6:00 PM, and 9:00 PM. I called it "dosing." And boy, was I stupid. I enjoyed myself, but I was not much good for anything except writing and crying. I certainly didn't get work done. Between being overwhelmed by what was happening to me and the Rick Simpson Oil, I was useless. But I had an inoperable, incurable, aggressive cancer, so I was doing what I thought I needed to do.

This stuff was not free, by the way. It's pretty expensive, though nothing like pharmaceutical drugs. The treatment period was for 120 days. It went from October of 2015 to January of 2016. I think I paid $2400 total for the whole treatment. One Lupron shot costs $10,000.

Once I went on the program, my PSA fell, from 15.8 to 4.00, then to 1.42. But that was also early in my Lupron treatment, so there was no way to tell which was working, or if it was a combination of the two.

After four months, we ran out of money for it, and I ramped down and stopped taking it. Between getting off of the oil and seeing a therapist, my head cleared up, and I could work again. But soon thereafter, my PSA started to climb. Was it because Lupron wasn't working anymore, or because I'd gone off of the oil? Or both? There was no way to know for sure.

I never revealed that information in my CaringBridge journal while it was going on. I told no one except close friends about the Rick Simpson Oil treatment. I was afraid that people would judge me. Well, I don't really care about that anymore. So there it is. The treatment program I revealed in Tiny Popsicles was my second time around with cannabis oil, not my first. And now, I'm starting my third.

The second time around, I didn't want to be impaired like I was when I took it orally. I read up on it, and found out that the recommended way of taking it for prostate cancer is also the least impairing way; as a suppository. It releases right next to the prostate. If it's done the right way, there is little or no sensation of feeling high. It feels very relaxing and calming, and helps with pain and sleep.

When I told my caregiver I wanted to try the suppository method, he had moved on to a new, more refined type of cannabis oil, Full Extract Cannabis Oil, or FECO. It's not dark and sludgy like Rick Simpson Oil, it's a beautiful clear gold color. Unlike Rick Simpson Oil, it has no smell. I fill molds I buy from Amazon with the oil, which is a 25% solution with coconut oil as a carrier. Almost 100% THC.

Because FECO and coconut oil mixed together are not solid at room temperature, the molds have to be frozen. Hence the name, "Tiny Popsicles." Or as my friends Christopher and Lori call them, "butt rockets." You can make up your own jokes. There are plenty of them in the Tiny Popsicles post. I can't top them here.

With metastatic cancer, however, it is important to get some THC into the bloodstream, since that's how the cells travel. So I do also take trace amounts orally to keep some THC in my system. The suppositories give me a very high tolerance, so the small amount I ingest doesn't impair me.

That program began in December of 2016, and ended in January of 2017. While I was taking it, my PSA fell again, from 4.77 to .16, then .06. But I had also just started on Xtandi, so there was no way to tell which of them was responsible for the good numbers. After 90 days, I ramped down again and went on a low "maintenance" dose. When I started ramping down, my PSA started climbing again. But Xtandi also became ineffective at the same time, or so it seemed.

Leading up to this last PSA test, I was thinking that, if the next result and subsequent scans showed that hormone treatment was no longer effective for me, I wanted to try going back on full dosing of the suppositories for 30 days to see if it made a difference. Now there would be no other factors, and we'd have a true test.

But how would I pay for it? The amount of oil I'd need would cost about $900. I'd had help from a friend the last time, and money from our GoFundMe campaign to pay for the first, but neither of those are available to me right now. I didn't feel like there was anyone I could ask for that much money for an experiment. And if it worked, then what? Do I have to stay on it for the rest of my life? Not that I'd mind doing that. But again, I'd have no way to pay for it.

When it was apparent that my cancer was growing again, I talked to my caregiver. I told him what I had in mind, and about our financial state. Without hesitation, he volunteered to supply my oil for free. Long term, if I stay on it, he's looking into a funding mechanism for patients like me who can't pay out of pocket for treatment. What a blessing.

As I said in my last post, my oncologist was enthusiastic about this experiment when I told him what I had in mind. He thinks it's a perfect time to test it for real. So much so that, when I met with him last Thursday, we were originally going to use my previous PSA result from two weeks prior as our benchmark. But the next morning, his office called me and said the doctor wanted me to come in for a new test to set a more recent benchmark. That's how seriously he's taking this. Another blessing that's hard to quantify. A doctor who is curious rather than dismissive, and approaches this in a scientific way.

And it's a good thing he called me in for that blood draw. Two weeks ago, my PSA was .98. You all saw what my bone scan looked like with that number. I just got the result from the blood draw on Friday, and it's 1.41. It's a good thing we did that last test. Our data would have been flawed if we hadn't.

When I thanked my caregiver for his generosity, he said that I had enabled him to have "all of this." Meaning the successful practice he now has treating cancer patients like me. I was his first, and having a cancer patient with an illness as advanced and aggressive as mine gave him credibility to build his practice. All because a friend of mine knew a guy who knew a guy. I don't believe that was a coincidence.

So as always, I feel very blessed, no matter how this turns out. From the cooperative attitude of my oncologist to the kindness of my caregiver, I feel like I receive blessing upon blessing. But I do want to know how this turns out. Has this been playing a major role in my cancer treatment or not? Is it keeping my cancer under control when I take it, or just making me feel good and helping me sleep? That's what this experiment is meant to show.

My next blood draw is August 2nd. Then I'll see my oncologist and we'll discuss where we are. If this doesn't work, and there are no clinical trials for me, it will be time to make some hard, final decisions. Of course, I'll tell you all about it when the time comes.

Thanks for your support, even though you may have doubts about this form of treatment. I hope you're at least curious to see if it works or not. I know I am. #waroncancer #bearingwitness

Thursday, June 29, 2017

The Path Forward


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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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