Monday, February 20, 2017

The Price Of Energy

Energy comes at a high price for me these days. Not gas prices, which are still pretty low, but my own personal energy output. Seems I still don't know how to pace myself. The way last week wore me out makes me wonder if one of the possible career options I've envisioned for myself going forward is practical to pursue. As much as I loved my experience last week, and as meaningful as it was for me and others, I don't know if it's something I can really pursue if it takes this much out of me just to do it once.

What I'm talking about is public speaking. I've talked in past posts about my propensity, post-diagnosis, (and post-Lupron) to propose toasts and make speeches. I love doing that. I love coming up with something thoughtful, emotional, and beautiful to say for an occasion; rehearsing it, internalizing it, and delivering it. I've done it for friends a few times and in church twice. But each of those was just a few minutes long. Those speeches didn't wear me out.

Being asked to preach a sermon in church is a whole other ballgame. As you may know from my last post, I was asked to speak at my church last week. My pastor messaged me to ask on Monday, the same day I found out I have osteoporosis. Not that the two are related in any way. I was excited to have the opportunity, and said yes right away.

To be honest, I'd been bugging our pastor to let me share my story for a while now. But I was thinking about simply talking, more or less off the cuff, about what God has been doing in my life as a result of my cancer. But our pastor is in the middle of a sermon series, and I wanted to fit what I said into it. What I had to share did go right along with his series, so it seemed like a perfect fit.

So on Tuesday, I sat down to write it all out. It took me about three hours. It came out like a really long blog post. I know, all of my posts are long, but this one is longer than most. When I read through it aloud, it ran about twenty minutes. Perfect. Now all I had to do was memorize it.

I've given other talks and lessons where I simply wrote an outline, and practiced from there. But that was before I considered myself a writer. Now, I want to compose something beautiful and deliver it. Much easier when it's a five minute house blessing than when it's a twenty minute sermon.

Maybe I approached it wrong. Once I started writing, the Bible teacher in me took over, and I had way too much information up front before I got to the personal stuff. I think my personal story was all my pastor really wanted, as long as I tied it in with his theme a little. But I couldn't help myself.

The last thing I wanted to do was get up there and read what I'd written. So I had to memorize it, as much as I could. The only way I know to memorize is through practice and repetition. So that's what I did the rest of the week. Practice.

For the first couple of days, I sat in front of my computer and read it aloud, making little changes as I went. When I thought it was pretty close to its final version, I emailed it to my pastor, and we met on Thursday to discuss the service on Sunday. My sermon was still timing out at about 21 minutes, so we were in good shape. He liked what I'd sent him, which encouraged me.

Thursday and Friday were more intensive practice days. As I began cutting down the text on the page to just notes, I found that I kept adding things to the sermon. Side comments and personal stories. Not to mention more Bible geekery. My sermon was starting to inflate, and I was really starting to fall in love with it.

Thursday and Friday, I thought I should start practicing standing up, the way I'd be speaking on Sunday. I rehearsed standing all day Thursday and Friday, and occasionally sat to practice a song I needed to have prepared for rehearsal with the kids on Saturday. Both nights, I took my sermon to bed and practiced some more before I went to sleep. After two days of that, my energy level wasn't what it needed to be for Saturday's rehearsal. But I made it through most of the day pretty well. I practiced in bed again that night, after having rehearsed with the kids all day.

It was while practicing in bed Saturday night that I realized my talk might have grown a little too long. I hadn't actually timed it out for a couple of days, so I wasn't sure. So I went through it and timed it on Sunday morning. Thirty minutes. Oops. Gotta cut some stuff out.

I cut a whole bunch out, mostly Bible lesson stuff and keeping the personal story intact. I hoped that would get me back to 25 minutes at the most. But I was out of time for practice. The show must go on.

Once the service started, I was able to just turn the whole thing over to God. During the music time, I worshiped. Didn't worry about the sermon at all. I had done all I could do to prepare.

The sermon itself went very well. I stumbled in a couple of places, and forgot one key line, but overall, I felt like God helped me do as well as I could do, and the people who were there responded to it. The service ran long, and I'm sure that's my fault. When the video is posted, I'll know for sure how long I went. But nobody seemed to mind. They were all with me, from start to finish.

It was a small crowd, being a holiday weekend. On three day weekends, people head up to the mountains here. Small groups make me more nervous than large ones, but I wasn't nervous.

Afterwards, people were very kind and complimentary. One guy said it was the best sermon he's ever heard. I was flattered, but I really hope that's not true. I've heard many sermons better than that one in my life.

As meaningful as it was for me, and hopefully for those who heard it, I have to say that I had no idea preaching was this much work. As I said in a Facebook post this week, is this what preachers do? Spend their whole week writing, rewriting, and practicing their sermons? I know there are gifted speakers who speak extemporaneously, without notes. I can do that up to a point, but not for twenty minutes or more. How do they do it, Sunday after Sunday, and have anything else in their lives? And I thought leading worship was tiring! Preaching is much harder.

I have a pastor friend who continued to preach and do the duties of a pastor while undergoing chemo for colon cancer. He must be Superman.

I've had visions of being a public speaker; speaking in churches, at men's events, and for cancer related causes. I know I'm good at it. But do I have the energy to do it? The price may be too high. Maybe I can come up with a standard speech that I do in each location, with a few variations. That would be much easier than what I did last week, trying to write a sermon out of whole cloth for the first time while fitting into a sermon series. If every speech requires a week of preparation and energy output, that may not be in the cards for me.

Today is a recovery day, which was to be expected after last week. We expected to see a friend today, but that got cancelled. It's probably just as well, but I had a bad hour or two, emotionally, when I found out it wasn't happening. I miss my friend a lot. But I need the rest.

This will probably be my last blog post for a couple of weeks. We're getting ready to go on a trip that some wonderful friends have blessed us with. I probably won't have another chance to write until early in March. I don't know if I can survive that long without writing. I don't have a working laptop anymore. I'd try to do it on my phone again, but it's impossible to write to a Google blog from an iOS device. Apple and Google are still at war, apparently. Could these two tech giants that so many of us depend on please put their big boy pants on and start getting along, please? OK, end of editorial.

The video of the sermon will be up on my YouTube channel soon. I'll share it here when it is. In the meantime, since I originally wrote it like a blog post, I turned the text into a page on this blog. It's titled, "The End Of Myself." If the "Christiany" stuff in this blog puts you off, that page is probably not for you.  But it's the most complete account, all in one place, of the spiritual journey I've been on. I hope you'll take the time to read it, or watch the video, or both. Like all my posts, it's straight from my heart. But you may prefer to put a face and a voice with the words you've been reading. If so, watch the video when it's available.

I loved doing what I did last week. In spite of everything I just said, if my pastor asks again, I'll say yes. Or if anybody else does. That's part of the reason I want the video on my YouTube channel. I hope people will see it and want me to speak for their group. I just hope that if those opportunities come my way, the price of energy isn't too high. #waroncancer

Monday, February 13, 2017

Old People's Diseases

My oncologist's assistant called today with the results of my bone density scan last week. As expected, I have what they call "significant bone thinning" from my last year and a half on Lupron. In other words, osteporosis. It's an expected side effect from Lupron, and we're already doing what's recommended for it.

The comedian in me wants to say, "Oh yeah, that's not the only bone loss I've experienced from Lupron!" Thank you very much. I'll be here all week. Be sure to tip your waitresses.

But seriously, folks, there are concerns that go along with this, of course. I haven't had a chance to ask how at risk I am for falling and breaking something. My oncologist wants me to come in for a blood draw to test my Vitamin D level and my TSH level, which has to do with my thyroid. But I don't expect to see him when I go in for that tomorrow morning.

When his assistant called to give me the news, she said that the Xgeva shots I'm getting are the recommended treatment for it. She had dosages of Vitamin D and calcium they want me to take every day, and I'm already exceeding those amounts. So it seems we're doing all we can do, except for one thing.

When I was having the scan done last week, the tech who did it said I should be doing "weight bearing exercise." I've been meaning to do that, but it's been hard to find the motivation. We have a gym in our basement, and I intended to work out this morning, but today was one of those "black cloud" days for me, for at least the first part of the day. Working out is not in the cards when I feel that way. But I intend to start working out again, at least three times a week, starting soon.

It's almost funny. First, I get what's considered an old man's disease, prostate cancer. That perception is no longer true, by the way, if it ever was. But the perception is still there. So I get treatment for my old man's disease, and it gives me an old woman's disease! Talk about getting in touch with your feminine side.

But the perception that osteoporosis is an old woman's disease is not true anymore either, if it ever was. Both my sister, who is younger than I am, and my mom have it. My sister's case is worse than my mom's. I'm sure my sister can refute the false perception about her disease as well as I can about mine. But doing that would ruin the joke, which she would never do.

And thin men can get osteoporosis too, which I definitely am. Lupron just makes it a sure thing.

But I didn't only get bad news today. I also got some exciting news. I've been asked to speak in church this Sunday. It won't be a sermon, per se, but I'll be telling my story, and talking about how God has been revealing himself to me since my diagnosis. Our pastor is in the middle of a sermon series about living in the Spirit, which I take to mean being aware of God's presence in our lives, and acting accordingly.

That's been happening for me since God woke me up with his 2 by 4 upside my head, and I have to admit, it has little or nothing to do with me. I think that's the point, and it will be the point of my "speech," as my friend Amber would call it. So my big assignment for this week is to write my first sermon! It's a challenge I'm very excited about.

We saw some dear friends this past weekend, on Friday, Saturday, and Sunday. On Friday, we had lunch with a couple we haven't seen for years, but they were great friends and ministry partners for fourteen years with my wife and me at our old church. I had a very important question to ask, and I got the answer I was hoping to get. It was a very meaningful time. Plans are in motion.

On Saturday, while I was at rehearsal with the kids, I got a Facebook message from one of the members of my favorite band, The Neal Morse Band. He was very touched by what I said about how God is using their music in my life, and said he would be praying for me. I don't need to tell you that his message made my day. As I said in my last post, Neal also has told me he and his family pray for me every day. To me, this is a little like Paul McCartney saying he's praying for me every day.

Of course, I know that the prayers of rock stars don't count any more than anyone else's. I'm eternally grateful for everyone who prays for me. So you now have two more things to pray about when you're praying for me. Please pray that God will give me the words to say when I speak this Sunday. I don't want it to just be me talking about me. I want the Spirit of God to come through with every word. And please also pray that I won't fall off the stage and break my hip! #waroncancer

Thursday, February 9, 2017

Two Appointments

I was interviewed today for an article about my Christian beliefs, and how they relate to my cancer, and the current political climate in the U.S.A. It was held at the home of a friend, and was constantly interrupted by her cat acting out because he wasn't the center of attention. So the interview experience was deep, thought provoking, challenging and hilarious all at once. I'm sure the recording will crack my friend up when she listens to it. But the lasting impact for me was a personal challenge I wasn't expecting.

My interviewer friend is not a Christian. Her spiritual beliefs are very different from mine. I prayed before I went there that I'd say what God would want me to say. I think I did that, and I was able to share some things that I've kept inside for a very long time. It was very therapeutic, which is fitting, since she's a therapist. Not my therapist, just a friend who happens to be one.

When we talk, our conversations tend to run long. A couple of hours at least. I joked with her that it's a good thing she's not my therapist, because if she said our time was up after fifty minutes, that wouldn't work for me. This interview was cut short after 90 minutes, because I had another appointment to get to, and another of my favorite people to see. But I'm getting ahead of myself, as I often do.

I won't go into the details of the interview. I don't want to steal her thunder. But I left feeling challenged that maybe I need to figure out a way to be more active in trying to use whatever platform I have to try to help the movement to which I've belonged since birth to conform more closely to the image of Christ, at least as I perceive it. That will take some thought and prayer.

My job was not to try to evangelize my friend during an interview, but to try to explain what I believe in a way that a non-believer can understand. Not an easy task. If you've ever tried it, you know what I mean. But I think it went very well. Except for the cat constantly interrupting.

My second appointment of the day was going to get my next Xgeva shot to strengthen my bones. It's been a while since I've had any treatment news in this blog, but I have a little today. Nothing earth shattering, but important.

The best part of going in to get a shot was that I got to see my favorite nurse, the famous Melanie. With her expert touch, I didn't even feel the shot, as usual. And with her sense of humor, the visit was a delight. I'm so blessed to have people like her on my team. That's how I see my doctors, nurses, assistants and staff. They are my team, and I'm so thankful for them. They're keeping me alive, for one thing. And they always make me feel welcome and cared for. I consider myself very blessed to have them.

Melanie and me

While I was there, I told Melanie that I didn't want to get the six month version of the Lupron shot anymore. It makes me lose my appetite, and as a result, I'm struggling to keep my weight up again for the first time in almost a year. So we'll go back to the four month shot from now on. My next Lupron shot isn't until April. I get the Xgeva shots every month.

I was supposed to be scheduled for a bone density scan, but no one had called me to set it up once it had been approved by my insurance. So they gave me the number to call, and it's set for tomorrow. The purpose of it is to see if I've lost any bone mass from Lupron. I hope not, but it's a strong possibility. Between that and the cancer in my spine and ribs, I'm concerned about the strength of my bones. Hopefully, all will be well. Of course, I'll let you know all of it when I know. Right after I call my parents. Tell your mom before you tell the world, that's what I have to keep reminding myself.

While I'm updating you on treatment, I should also tell you that I'm in the third month of my 90 day cannabis oil suppository program, which I describe in my post Tiny Popsicles. I gotta tell ya, it was pretty weird putting those things in my octogenarian, evangelical parents' freezer and taking them out to put one in twice a day while I was visiting my family last week. I never thought I'd be doing that. But they were very understanding, and open to the idea that it might be helping with my cancer. If nothing else, it helps me sleep, which makes me not want to stop at the end of this month. And I can't help but believe it's giving me pain free days that I might not have otherwise.

When I was in the office with Melanie, I shared with her the number of views that my last blog post about her has had. She was impressed, and said she thinks it's wonderful that I have so much support. I think so too. Because as I said in my post My Team, everyone who reads this blog, prays for me and supports me is part of my team. Everyone who loves me and wants to help in some way is part of my team. My favorite musical artist, Neal Morse, and his wife are on a working cruise right now, still praying for me every day. They're part of my team. My friend who interviewed me today is not only part of my team, but my inner circle. Like George Bailey in It's A Wonderful Life, I'm the richest man in town.

In December of 2015, I wrote a post to what was then my CaringBridge journal titled The Richest Man In Town. I closed that post with the following paragraph:

My final proof that I'm the richest man in town is the fact that you're reading this right now. The fact that so many care about anything I have to say is a miracle. The fact that so many more care what happens to me is more than I can wrap my head around. You probably have a bigger bank account, but I'm the richest man in town.

I still feel that way today, but a hundred times more. I spent the morning spiritually challenged at one appointment, and the early afternoon medically encouraged at the other. For a Stage 4 cancer patient, that's a very good day. #waroncancer

Monday, February 6, 2017

The Album I Can't Stop Listening To

Since I started buying albums when I was a teenager, there have been those that I couldn't stop listening to for a while. I would just play them over and over, and never get tired of them. There was always lots of other music I liked while I was in this state, but while in it, there was only one album I wanted to listen to. When I was in high school and college, the simple reason was that I didn't have the money to own that many albums, and I'd worn out the ones I already owned. So I'd binge-listen to any new album I got.

But there have always been those that stood out. As I got older, and my music library grew, it became rarer for an album to make such an impression on me that I couldn't stop listening to it for a long period of time. But it still happened from time to time. And now, it's happened again, and at just the right time for me.

This is not an album review. It's just a testimony of one more thing that has been an encouragement to me at the exact time I needed it. If you've read my blog over the last few weeks, you know that I went through a difficult time, emotionally, not too long ago. But then, a couple of things happened that were just what I needed. My last post was all about one of those things; a long awaited and much overdue visit with my Godly family. But before that, a new album by my favorite band, The Neal Morse Band, came out.

For the uninitiated, Neal Morse is a progressive rock artist who is also a Christian. Please don't ask me to define progressive rock. Fans call it Prog for short. Bands like Yes, early Genesis, Emerson, Lake and Palmer, Jethro Tull, Rush and Pink Floyd are considered progressive rock. They are the founders of the genre, along with King Crimson and a few others. There are bands that carry on that style of music today, and The Neal Morse Band is one of them.

But the style of music is not the point. I've had albums in many styles of music become ones that I couldn't stop listening to for a while. Albums that changed my life. One of those was Nilsson Schmilsson by Harry Nillson in the early 70's, when I was in high school. Hardly a progressive rock album, but it was the one that made me believe I could be a songwriter. And I did become a songwriter. A professional one. That album still holds up for me today. Great songs never lose their power. And a great album can change a person's life, if you're as passionate about music as I am.

Neal Morse has been my favorite artist since I discovered his music about ten years ago. His combination of compelling progressive rock and uplifting, strong Christian themes in his lyrics speaks to me in a very personal way. But as much as I loved his music for the first eight years or so that I got familiar with it, I was not prepared for the way it would impact me when I was diagnosed with cancer.

In case you're new to this blog, I'm a Stage 4 prostate cancer patient. I have metastasis to spine and ribs, and my cancer is very aggressive. My prognosis is not the best. I've been on hormone treatment for it, which strips away filters and lays emotions bare. It, along with the sheer weight of having a terminal illness, has been the cause of many emotional ups and downs. There are days I really need something to lift my spirits. Neal's music never fails to do that for me.

Here's the simple truth. When I'm having a bad day, I put on one of Neal Morse's albums, and I immediately start to feel better. I start to feel inspired. I feel God's presence with me and in me stronger than before. Isn't that what music is for?

A number of Neal's albums have fallen into The Album I Can't Stop Listening To category over the last several years, but this one is special for many reasons. One is the fact that it's a true collaboration with the other members of the band, like their previous album, The Grand Experiment. But this one is a double concept album based on the classic Christian allegory novel, Pilgrim's Progress by John Bunyan. The title is The Similitude Of A Dream, which is a quote from the original cover of the book. It's the story of a man on a journey, and one I can relate to very well.

It's also special for the mere fact that it's one of the best progressive rock albums ever made, in my opinion. And my favorite artist and band made it. The reviews for it are overwhelmingly positive, and deservedly so.

It also happens to be the first album that my favorite artist and band has put out since I got cancer. For the past year and a half, when I was having a bad day, their back catalog encouraged me. And then they went and put out their best work ever, just when I needed it. I know they didn't do it just for me, but it feels to me like they did.

I ordered the album soon after it was released. I bought the Special Edition, which I always do, because I love the "Making Of" documentaries they include in those. I had a couple of months before their tour came through Denver to get familiar with it, and get familiar with it I did. As the concert drew closer, I listened to it more and more. I like to get to know an album well when I'm going to see it performed live soon.

Lots of times when I do that before a concert, once the concert is over, I don't want to listen to the album again for a while. But not always. Sometimes, I only want to listen to it more after the concert. That's been the case with this album. I'm sure that's because the concert was so amazing, and I got to meet the guys in the band. As is the case with all of their music, it's better live than on the recording. So the concert only made me want to listen to the album more.

It's not easy to listen to a two hour album. It takes time commitment. I wanted to listen to it on the plane to Chicago last Wednesday, but the flight was only 90 minutes going that direction! That's Prog for ya. Hey Guys, I wanted to listen to your new album on the plane, but it was only a 90 minute flight! But the return flight was over two hours, so I listened to it on the way home. I can't tell you how it ministered to me after the blessed visit I had with my family.

I still can't stop listening to it. I listened to it while I ran errands today, and finally watched drummer Mike Portnoy's listen-through and commentary on YouTube tonight. That only made me want to keep listening to it.

For many of you, this whole concept will be foreign. You may never have had an album you can't stop listening to. Or at least, not for a long time. But I live for those times. There are long stretches when there's no album like that for me. For it to happen now, with this album by this band, is an incalculable blessing to me.

If you're going through a valley in your life, I hope you find an album you can't stop listening to. It can be a balm to your soul. No matter what kind of music you like, those albums are out there.

This album has a funeral song for me. I've often heard people say they want this or that song sung at their funeral, but I've never thought that way until recently, for obvious reasons. The song is called Breath Of Angels. The second chorus goes like this:

With the breath of angels
Charging up the atmosphere
And all around me
Is the love that casts out all fear
O God, my Father
In your mercy you brought me here
Where the breath of angels dries away every tear

Expect to hear that at my memorial. But not anytime soon.

I need this kind of album in my life. I hadn't had one for a few years, and never had one since I was diagnosed. Until now, when my favorite artist and band put out the best album they've ever made, and one of the best albums in this genre anyone's ever made. It carries a message that speaks to where I am, and lifts my spirits every time I listen to it. That's why it's The Album I Can't Stop Listening To. #waroncancer

Friday, February 3, 2017

Why I Am The Way I Am

I learned a lot about myself on this trip to visit family. I flew in Wednesday, and flew back home Saturday. I stayed with my parents, both of whom are in their eighties. Both of my sisters live nearby, along with some of my nieces and nephews and three adorable grand-nieces. Am I really a grand-uncle? Why, yes I am. The grandest, of course. But I wonder how much these young beauties will remember about this visit, and the old man they met this week. I'm afraid there hasn't been enough time for us to really get to know each other. That's what this visit was all about. Time.

It was my first time flying anywhere since I was diagnosed, and my first time seeing my immediate family in three years. Here are two factors that will give you some idea of the family I come from. The last time I was here, three years ago, it was for my parents' 60th wedding anniversary. That's number one. And the reason I'm here now is because my two sisters paid for my airfare as a Christmas present for my mom and dad. Those two things alone tell you something about these people who shaped who I am.

My youngest sister, Lynda, picked me up at the airport and drove me to my parents' house, about an hour's drive. On the way there, Lynda made a couple of comments that I found very revealing. At one point, she was laughing about how she had managed to turn all of her kids into University of Michigan fans, even though none of them had attended the school, or even lived in the state! I asked if none of her kids had rebelled and decided to root for a different team. You know, just to be different. She replied, "No, Mark, I never had a you." Meaning a kid who had to be different, just because. Never had a me. Hmmm...

And when I look at my family, I can see it's true. I'm the only rebel in three generations. And on much more important issues than sports teams. In terms of my view of the world, politics, lifestyle, the music I like, you name it. I always had to be different. Why that is, I'm not sure. But being back here with the ones who stayed when I was the one who went off on my own all those years ago makes me wonder. Why am I the way I am?

I'll admit, I came into this trip with some trepidation and a bit of an agenda. I thought there might be deep issues that needed to be discussed. Cards that might need to be laid on the table. But all of those preconceptions melted away the moment I saw my sister. The one who said she never had a me. From that moment on, this became a time to treasure. It's a gift of time that was as needed as it was unexpected, for all of us.

I've always been a free spirit. Always marched to the beat of a different drummer. And living thousands of miles away from my family for the past 39 years or so has only accentuated those differences. But as in many other areas of my life, cancer has changed my outlook. And being here now with my family, it's made me think much more about how rich I am to come from such people as these. It's gotten me thinking about our similarities rather than our differences.

Both of my sisters teach. One is a college professor who spends her life teaching and mentoring university students. The other has worked with developmentally disabled children for more than thirty years. I've recorded with kids for many years, but mentoring was never high on my list of things to do until cancer came calling. Now, as you know, it's one of the great joys of my life. Just one small way I'm learning to be more like my sisters. But from my perspective, the big difference between them and me is they learned how to serve others without cancer. It took a life-threatening diagnosis to wake me up.

Then there are my parents. My mom has arthritis, and my dad suffers from constant, pounding headaches. Neither ever complains. If you think I exhibit grace in affliction, if you think I have a positive attitude, it's because I have them as a model. If you think I have faith, they were the ones who imprinted their faith on me.

My dad is also the reason I'm such a big softie. My tendency to bless others, to make speeches, and to cry at the slightest provocation all come from him. The last time our friends Derek and Amber visited us, Derek said, "I thought it was Lupron that made Mark so sweet. Now we know it's his dad!" Yup. Pretty much.

So this time I get to spend with family is very precious. None of us knows if we'll get another chance to do this. So we're doing our best to make the most of it. It's too bad we haven't treated past visits this way, but that's human nature. None of us are promised tomorrow, but we act like tomorrow's a sure thing all the time.

Today wasn't promised for someone I didn't get to see on this trip. My main college professor, voice teacher, college choir director, mentor and friend passed away last December. Other than my parents, he shaped the man I became more than anyone else during my formative years. He was universally respected and loved by everyone who ever sat under his tutelage. I missed my chance to spend any more time with him by about a month. But I did get to see his widow this week and pay my respects. It gave me great joy to tell her what her late husband had meant to me. He's another big reason why I'm the way I am.

I won't go into the other telling remark my youngest sister made on the drive to my parents' house from the airport. It's not germane to this post. But it showed how well she knows me. Let's just say she totally busted me on my assertion that I'm done "running the show." In fact, I'm planning one more big show, and I intend to make sure everything happens the way I want it to. And I won't even be there for it, if you know what I mean.

But that's the way I am. I'm a firstborn, after all. Each of us is a product of our environment, no matter how far we run or how much we try to rebel. And I discovered on this trip that I'm not as different from my family as I thought. Nor would I want to be, in all the best ways. #waroncancer

Thursday, January 26, 2017

The Six Month Lupron Shot Blues

In my younger days, I would have written a song by that title this week. Now I write blog posts instead of songs. If this post was a song, maybe the chorus would go like this:

I got the six month Lupron shot blues,
I got the six month Lupron shot blues
I'm having hot flashes, crying spells, and what's my excuse?
It's just the six month Lupron shot blues (cue the guitar solo)

For whatever reason, when it was time for my Lupron shot about two weeks ago, they had ordered the six month version of the shot instead of the four month version, which I had been given previously. As I consulted with my oncologist prior to treatment that day, my favorite nurse, Melanie, opened the door to ask him if the six month shot was the right one. He wasn't sure why that version of the shot had been ordered, but thought it would be fine to go ahead with it. Less shots for me. The idea suited me fine at the time. But since the shot, I've had a bit of a rough go.

For those who may be unfamiliar, Lupron is a testosterone blocker. Prostate cancer feeds on testosterone, so the idea is to starve the cancer of its food by suppressing it. That's what medications like Lupron and the Xtandi pills I'm taking in addition to it are supposed to do. But there are side effects. Boy, are there.

There was much more soreness and stiffness from this shot than the four month version. While I never felt the shot itself thanks to the expert touch of Melanie The Super Nurse, there's no avoiding the after effects as the stuff slowly spreads into your system. I was sore and walked with a limp for at least four days. It was hard to sleep on my right side - the side I usually sleep on - and painful to turn over in bed. But that went away after a few days.

What stayed are the emotional effects and numbness. I've experienced what feels like real depression this past week for the first time in my life. Not all the time, just two days out of the last seven. But those two days were hellish. I felt like I was under a black cloud all the time. I struggled with the desire to live. It was hard to take my pills in the morning. Hard to simply put one foot in front of the other. I felt a sense of impending doom.

The good news is, I've felt good the rest of the time. I've had things to look forward to each of my "good days" this past week; Coaching the kids, visiting friends, therapy, and a long-awaited concert. But the two days I had nothing much planned, the black cloud asserted itself.

I don't attribute the times of depression to the shot alone. Circumstances play a large role as well. But Lupron doesn't help. It magnifies everything. Or should I say, it magnifies my emotional reaction to everything.

This is where the supplement I've talked about so much, 5-HTP, should come in, right? Yes and no. 5-HTP does a good job of helping me let go of what's bothering me, but it also makes me numb to my emotions. So if I'm doing something where I want to feel my emotions, like go to church, visit with friends, go to therapy, or write this blog, I don't take it. Most days this past week, that was a good decision. I had a good day without it because of the plans we had. But it turned out to be a mistake last Sunday. I had a horrible day that day, and church seemed to only make it worse. The black cloud was like a black marble ceiling. The desire to live was hard to come by.

But I have kept taking my pills. I haven't missed a day yet. Never fear. I'm starting to feel like my usual, optimistic nature is beginning to reassert itself. But I still feel like the black cloud could come back at any moment, and at the slightest provocation. It's a very strange feeling for me. And it's one reason I'll tell my team I only want the four month version of the shot from now on. I don't like feeling this way.

The other reason is numbness, especially in my abdominal area. I don't have much of an appetite since the shot, so I'm losing weight again. I'm sure my emotional state plays into my appetite, but I don't feel much like eating even on days when I feel good emotionally. I literally don't feel hungry until I notice my stomach growling. So my normal weight, which fluctuated between 130 and 132 pounds at the end of last year, is now down to 126. Actually, I've lost a pound a day for the last three days. Tuesday I weighed 128. Yesterday I weighed 127. Today it was 126. At this rate, I'll be down to zero by June 1st. I couldn't help but use that joke again, Deanna.

I went through this once before, and saw a nutritionist to help me with it. So I know what to do to gain the weight back. But it's hard for me to eat when I don't feel hungry. If I lose any more weight, however, I'll have no choice but to go back to protein shake lunches and regular snacks between meals. This is the other reason I don't want the six month version of the shot again.

If I lose too much ground with my weight, it will take me some time to gain it back with my high metabolism. But I have to gain it back. We have 40th wedding anniversary pictures to take this June, so I can't allow myself to weigh zero on June 1st. I will not look like Gaunt Cancer Guy for those pictures.

After the first month or so, I know from past experience that the emotional effects will subside some. I know I serve a God who can part the black cloud. And I know I can gain the weight I need if I eat the right way. I've done it before. But till then, I'll be singing The Six Month Lupron Shot Blues. Everybody sing along! #waroncancer

Friday, January 20, 2017

My Team

Until recently, if you'd asked me who my team is, I'd have said the Denver Broncos. I even found a graphic for this post in their team colors! They're still my favorite sports team, but I have a much more important team now. My medical team. My oncologist and his wonderful staff. I couldn't ask for a better team. I just hope I get to keep them.

After my last visit to the oncologist's office, when I got such stellar PSA numbers (.16, my lowest result ever, down from 1.3, my previous all-time low) and great care, which I talked about in detail in my last post, I received an email from Centura Health, where I get all of my treatment. Cypress Hemotology and Oncology at Porter Hospital here in Denver, Colorado is the actual oncology office I visit most often. They are part of Centura Health. In the email, Centura wanted me to fill out an online survey about the care I received.

I almost never fill out online surveys about anything, but this time, I made an exception. Each page of the survey asked a series of questions about my visit, from the reception staff to the doctors, nurses, and assistants. Each question asked for a rating, from Poor to Excellent. There was a box for comments at the bottom of each page.

As you can probably guess, I gave them an Excellent rating on almost everything. I think I gave them a Very Good on one thing, but I don't remember what. And I typed glowing reviews in the comments box on most of the pages.

On the reception page, I talked about how most of the receptionists seem to know me by name now, and how nice that is. On the page dedicated to the nurses and physician's assistants, I asked if I could give Melanie, my cancer care nurse and Nikki, who is the PA who does most of my blood draws, a ten. The ratings only went up to five. I love these ladies. And on the oncologist page, I raved about how my doctor is just the kind of doctor I want. A no-nonsense science guy who gives it to me straight, and always respects my treatment choices.

As I filled out that survey, the feeling that began after I posted Melanie And Me grew very strong. These people are my team. I honestly hadn't thought of them that way until recently. But the incredible, unprecedented response to Melanie And Me had brought that idea home to me. So many responded about their own cancer care team, or the team a loved one has or had. I realized that I love my team too.

After that visit, I felt so good about the way my treatment is going, I said in this blog that, since what we're doing seems to be working, we're gonna keep doing it. That is certainly my hope and intention. But it all depends on my ability to continue this treatment, and my ability to keep seeing my team.

Because, in spite of my good PSA numbers, I still have aggressive, Stage 4 prostate cancer. My prognosis has not changed. We're very hopeful that the good numbers will continue for a good long while, but that can only happen if I can keep getting treatment as planned.

There's a reason I'm writing this and posting it on Inauguration Day. I've talked about it before in this blog. I'm concerned that I'll lose my coverage. If I do, I'll have to stop seeing my team, and these good numbers won't last long.

I'm not here to blame anyone. I know that people who love me, and care about me deeply voted for this result. It's hard for me to reconcile in my head how that could be, but I have to accept it. And of course, I know it's not all about me. Everyone votes based on the issues that are important to them. I can't honestly say that I had the fate of my health care in mind when I voted. I can't expect you to be thinking about me when you vote.

I know that everything government does takes time, and even if they repeal my coverage tomorrow, there will be a period of some months, at least, before it expires. So I should have some time to keep going with my treatment. I should be able to keep seeing my team for a little while longer, at least. Maybe I'll even be able to get my next Lupron shot six months from now. But I fear that won't be the case. There are too many in Washington, D.C. who subscribe to the "makers and takers" view of society. There has never seemed to be a great desire on the part of those who share this philosophy to help those who are viewed as takers. I've been a maker for my whole adult life until I was diagnosed, but now I definitely fall into the taker category. I need help. A lot of it. Much more than can be raised in a GoFundMe campaign.

So just as I realized what a great team I have, I'm faced with the prospect of losing them. I know that the current system forced many to change their coverage and doctors, and if that happened to you, I don't minimize your experience at all. But it didn't take away your ability to get coverage. It may have made it more expensive and less convenient, but you probably still have it. And it provided a way for self-employed people like me to get coverage. Many of us, for the first time in our lives.

If I have to buy insurance on the individual market with no help, insurance companies will be able to charge me whatever they want. I have a $9,000 prescription every month! What will my premium and deductible be? If that's my only choice, I'll have to go without insurance, and without care. Nightmare scenarios involving paralysis, forced hospitalization or institutionalization with no insurance, followed by a seizing of all of our assets to pay the bills, leaving my wife with nothing but debt race through my head.

You may try to reassure me, but this possibility seems all too real to me. It happened to many people before the Affordable Care Act was passed.

I'm sorry if this post went off the rails for you. If it did, you probably haven't read this far. And I realize that my team extends far beyond my medical team. Everyone who prays for me, supports me, and loves me is part of my team. My extended team comes in all political stripes. I love each and every one of you, regardless of how you voted. But I still really hope I get to keep seeing my medical team for as long as I need to. #waroncancer

Friday, January 13, 2017

Melanie And Me

Today's visit at my oncologist's office was very good. My consultation with the doctor was first, followed by treatment. As usual, I "checked in" on Facebook when I arrived, and was overwhelmed with the amount of support once again, just from that simple post. You people are amazing.

I loved knowing my PSA number before my doctor had a chance to tell me. The "drum roll please..." aspect of waiting for him to tell me my PSA level has been a little unnerving in the past. I like their new system better. As promised, I made a list of questions and suggestions from some of you and asked him each one. Here are his answers.

First of all, I told him how, three months after my first Lupron shot, when my PSA had dropped from 15.8 to 4.00, I had asked my old urologist what those numbers meant. My urologist at the time said that it meant my cancer was only growing at four percent, rather than 15.8 percent. I've been using that as a measuring stick for future PSA numbers. My oncologist agreed with that first assessment, but said that now, it's more about the trend than the actual numbers.

Different types of prostate cancer produce different amounts of PSA. So while my score of 4.77 a few months ago didn't seem that high when taken by itself, the fact that it had risen so fast from the previous score of 1.97 was a cause of real concern. But others can have much higher scores, and their number may mean something completely different than my score.

In fact, he said that my contention in my last post that a score of .16 means my cancer is growing at a negligible rate is wrong. It's better than that. The fact that the number is trending down means the cancer is actually shrinking. So there's that.

I asked him about Zometa and Prolia, both of which are bone-strengthening drugs that were suggested to me in comments to my post, My Next Big Decision. He didn't think either of those would be as effective for me as Xgeva. I asked him about waiting until I have symptoms to start on Xgeva, and he replied that the point of starting it now is to try to postpone the day when symptoms begin. I'm all for that.

I asked about getting a bone density scan, which one of you suggested. He agreed that would be a good idea, to get a baseline of how much bone density I may have lost from Lupron over the past year or so. They will schedule that for me, and let me know. He says it's easier than a bone scan or MRI. Nothing awful to drink, and no IV. It's basically just an x-ray.

I asked him about the statement from a friend's physician husband that with Xgeva, I have a 2% chance of having jawbone problems, but I'd have a 100% chance of cancer wreaking havok on my spine without it. Wreaking havok is a direct quote. He agreed with that, but added that since I've had a dental exam and x-ray and been cleared for Xgeva, my chances of getting ONJ from it are less than 1%. So that pretty much clinches it.

I told him I'd started the Rick Simpson Oil suppository program in December that he and I had talked about previously. I said I thought my low score could be partially due to that. He said it's possible, but he would expect to see a number that low just from this much time on Xtandi too. So who knows what's really working? Something is, so we're gonna keep doing what we're doing. He says he's all for it, though he winced when I told him the suppositories are frozen.

Finally, I asked him about getting the shots every three months instead of every month, which was also suggested to me. Some patients only get the shots that often, and some studies have shown it's just has effective that way. My oncologist is not opposed to that in the future, but would like me to get the shot every month to start with. Maybe we can back it down to every three months later, after we see how things go. But I'm happy to go in once a month for a while, because it gives me a chance to see my favorite nurse, the famous Melanie.

If you read my last post, you know that Melanie doesn't normally work on Fridays. She came in special today, just for me. When the doctor left the room and Melanie came in, I teased her that she only came in today so she could get another look at my butt. That's where you get Lupron shots. She joked right back, that yes, my butt is pretty cute, and I should be proud that I have my own personal nurse who will make a special trip just to get a peek at it.

This joking was in reference to the last time I saw her. A dear friend who shall remain nameless had just posted a picture of her husband's butt getting a Lupron shot on Facebook. An image that's still seared in my brain. I'll never be able to unsee it. Thanks for that, guys. I told Melanie about that when she gave me my previous shot, and we had a good laugh about it. She said I have a really nice butt, and I should put it on Facebook! But I will spare you that. You're welcome.

As expected, the shots were easy. I barely felt either of them. For whatever reason, they went with the six month version of the Lupron shot this time, which amounts to more of it in my system. So I'm starting to feel it in my hip now, and walk with a bit of a limp, but that will go away in the next day or two. All the while, Melanie and I joked and laughed and enjoyed each other's company.

When we were finished, I showed her my cross pendant, and told her about them. Then I pulled one out of my jacket pocket in a nice jewelry box and gave it to her. I repeated to her what I said in my last post, that since she treats cancer patients all day every day, and she had come in especially for me today, I thought she should have one. My wife makes them in just about every color, and she picked out a green one to give to Melanie. When Melanie opened it, she was delighted, and said it was her favorite color. In the selfie above, you can't see her cross, but we're both wearing our pendants.

As I was waiting at reception to schedule my next monthly visit for an Xgeva shot, she made sure that the date would fall on a day when she's working. It seems I really do have my own personal nurse. Then she gave me a big hug. The kind where you think it's over, but the other person doesn't. I tried to let go a couple of times, but she wouldn't. She said that this is the reason she comes to work; days like this.

I think this has to go down as the best visit to my oncologist that I've had so far. I hope you never need a Lupron or Xgeva shot, but if you ever do, ask for Melanie by name. She may even say you have a cute butt. #waroncancer

Thursday, January 12, 2017

Almost Zero

I was going to wait to post again until after my appointment with the oncologist tomorrow, but I got the results of my last PSA test, and I couldn't wait to share it. It's .16! That's as close to zero as I ever expect my number to get, since I still have my prostate. It's a very good day today. We might have to break open the half bottle of champagne that we didn't use on New Year's Eve.

I'm sure my oncologist will give the credit to Xtandi, now that I've been on it for three months, especially after my number dropped from 4.77 to 1.3 in only two weeks after I started taking it. But I think the Rick Simpson Oil suppositories have a lot to do with it too. See my post Tiny Popsicles if you don't know what those are.

My head told me I might get a number below one for the first time in, like, ever, but my heart didn't believe it. For some reason, I was really nervous about this result. So this is a huge weight off of my shoulders.

What does this number mean, in layman's terms? It means my cancer is growing at a negligible rate. Less than two tenths of a percent. After 4.77 percent, I'll take that! It means my cancer is under control, more so than at any time since I was diagnosed. It's very good news.

My PSA will never be zero, because I still have my prostate gland. In spite of the fact that it's riddled with cancer, it continues to produce PSA. Only those who've had surgery to remove their prostate, or had radiation treatment to kill it, can hope to have a PSA score of zero. But .16 is pretty darn close.

I'm sure this means I won't have to get another test until April or May, when my next Lupron shot is due. That will probably remain true until my number starts to rise again. Which, hopefully, won't be for a while.

After much consideration, and a lot of support and feedback from many of you, I've decided to go ahead with the Xgeva shots to strengthen my bones. In all of my inquiries, I wasn't able to find one person who had dental x-rays and was cleared by a dentist, but still suffered from osteonecrosis of the jaw, a.k.a. ONJ, a.k.a. jawbone death from it. As you probably know, I had a dental x-ray done, and was cleared for Xgeva. That's one factor.

The comment that more or less clinched it for me was from a friend whose husband is a physician. He said the chances of my experiencing jaw problems from Xgeva are two percent, but my chances of having spinal problems if I don't are one hundred percent. If that's true, it pretty much makes this decision a no brainer.

I'll still collect all of the suggestions I got from many of you, write them down, and ask my oncologist about each of them. One suggested I ask if I can get the shot every three months instead of every month. Xgeva stays in your system for a long time, so that may be an option for me. Another wondered if, since I have no symptoms now, can I wait until I start having symptoms? Others suggested different drugs I might try instead. I will ask him about all of it.

I can't express how grateful I am for your response to my last post, My Next Big Decision. Over 200 responses of support, love, prayers, and valuable input on Facebook and in the comments of this blog have been very helpful. I'll never be able to thank you enough. You helped me gain some clarity in this very difficult decision. I feel very loved.

One last story before I close this post. When I was at the oncologist's office the morning of my blood draw, I stopped at the front desk to make sure my favorite shot giver, Melanie, would be there to give me my shots on Friday. I found out she doesn't work on Fridays. I stood there while one of the receptionists talked with Melanie on the phone, hearing one side of the conversation. She tried to reschedule my consultation with my oncologist to a day when Melanie was in. As I listened, it became clear that both of these women knew exactly who I was, in spite of the fact that they treat hundreds of patients, and I only see Melanie every four months.

After a couple of minutes, Melanie said she'd come in on Friday morning just for me. Just so I'll feel better about getting my shots. I think I need to take her something to thank her. This is a lady who treats cancer patients all day, every day. I think she might need a cross pendant.

I'll post again tomorrow about my appointment, and let you know how all of that went. I rarely post on back-to-back days anymore, but I thought this news called for it. Thanks again to each of you for all your support, and to the God from whom all good things come. #waroncancer

Saturday, January 7, 2017

My Next Big Decision

I have a major decision to make with regard to my treatment in the next few days. It's a very difficult decision to make, at least for me. My next PSA test is next week. I expect the number to remain low, since I've only been on Xtandi for three months. But I'll find that out on Friday. I'm also scheduled to get two shots on Friday: My next four-month Lupron shot, and my first monthly shot of Xgeva to strengthen my bones. But Xgeva can have a scary side effect. That's why I'm still on the fence about starting with it.

I've talked about Xgeva before in this blog. In past posts, I've been pretty well decided against getting the shots because of stories I've heard about this particular side effect. It's called osteonecrosis of the jaw, or ONJ for short. In plain English, it's jawbone death. Some who are on Xgeva experience this side effect. You get exposed areas of bone in your jaw, and your jawbone starts to fall apart. Doesn't that sound lovely?

In case you're not up to speed on my condition, I am Stage 4 with metastasis to spine and ribs. Cancer on your bones can compromise their strength. This is especially concerning when you have cancer on your spinal cord, like I do. I have a friend whose husband's diagnosis is very similar to mine. He didn't go on Xgeva, and he had a vertebrae collapse from a tumor. He lives with paralysis from that to this day. I wouldn't want that, so that's an argument in favor of going on the Xgeva shots.

On the other hand, I've heard stories of those who have experienced ONJ from Xgeva. For some, there is terrible pain. You start to lose pieces of your jawbone. But this side effect is supposed to be confined to those who need a tooth extraction or root canal. So you're supposed to go to the dentist and get an x-ray first to make sure you're a good candidate for Xgeva.

If you've been reading this blog, you know I did that last October. I have a lot of fillings, and a few caps, and I hadn't been to the dentist in years. So I was nervous about the quality of my teeth, and how susceptible I'd be to getting ONJ. But my x-ray showed no need for extractions or root canals, praise the Lord, although I did have some cavities that needed to be filled. My bite still isn't right from that, which makes me nervous. I still have discomfort chewing on my left side, which I've only had since I went to the dentist.

So I hesitate. On paper, I should be fine to go on Xgeva. I asked about it in a support group today, and haven't heard from anyone who was cleared by a dentist, and still ended up with ONJ. But I keep hearing it's a very common side effect.

I don't know how common paralysis is in those with mets to spine who don't go on a bone-strengthening drug like Xgeva. I should research that. But frankly, I'm tired. Tired of the life-or-death choices I have to make. Tired of weighing which horrible side effect would be worse.

Which do you think is worse? Having your jawbone fall apart, or paralysis? Having to drink all your food through a straw, or not being able to get out of bed? I suppose paralysis would be worse, but I wouldn't want to live with either. Quality of life over quantity. That's my motto.

So one of my biggest questions for my oncologist when I see him on Friday is, what are the risks of both? If I go ahead with Xgeva, what are the percentages? Likewise if I don't. What an awful choice to have to make.

I know that for many, any treatment that the doctor says will help is a no brainer. But not for me. I want to know the odds. I want to know what is the worst that could happen. A low percentage is not necessarily comforting to me. And while I still have no symptoms, it's easier for me to believe I'll experience problems from treatment than from my cancer itself. That's all I've experienced so far.

I don't have a spiritual point to drive home in this post. I'm just letting you all in on my dilemna. Do I go ahead and take my chances, or hold off and take my chances? It's a gamble either way.

That's the life of a cancer patient, especially one with an aggressive, Stage 4, incurable cancer. So many life-or-death decisions, and many times, there are no good choices. Please pray for me over the next few days that I'll make the right choice. #waroncancer