Saturday, October 14, 2017

Just Some Guy


Day 18 of hospice care. Still no symptoms. But the results of my last PSA test came in. It's 13.2, up from 5.45 a month ago. The clock is ticking. When I see my doctor on the 31st, I'll ask for an updated prognosis based on that number.

People were very kind in their comments on my last post. Too kind, really. Now, far be it from me to shy away from compliments, but I have to disagree with some of the things that were said, as nice and complimentary as they were meant to be.

One dear lady called me an angel. My response was that I'm no angel, I'm just some guy who God decided to show himself to. Whatever good you think you see in me has nothing to do with me. It's nothing that I achieved, it's something that happened to me with little or no effort on my part. Kinda like cancer. And it wouldn't have happened without cancer, either.

One quality that seems to be coming to the forefront now, however, is one that has always been part of my nature. It's not something I learned in my journey, or that God granted me since he drew me so close to him. It's something I've always had, like curly hair and brown eyes, therefore I can't take any credit for it. I've never been afraid of dying. I can't remember one time in my life when I thought about death and was afraid.

I've been in a few auto accidents, and once or twice I thought my number might be up. In that moment right before the crash when I realized there was nothing I could do, I've never felt fear, only peace. That tendency seems to have carried over to now, when facing a short prognosis. I feel no fear at all. Not just about death, but about anything.

In the comments of my last post, many called me brave. I appreciate your kindness, but I am not brave. Bravery, or courage, is not the absence of fear. It's the ability to overcome fear. I'm no hero, I'm just some guy who's run out of things to be afraid of.

Who is brave, the one who dives from a tall platform because they're not afraid, or the one who dives in spite of their fear? I have no fear of the platform or the water. For me, this dive is like falling into bed. It doesn't take much courage to fall into bed.

I was talking with my friend Miki Chambers about this recently. She had a hard time understanding how I could be so calm about all of this. I told her I didn't become a saint on purpose. It just happened. One day, God decided to show me the reality of who he is, and all I could do was say, "...Oh!"

I wrote a post a while back called What I'm Afraid Of, which Miki inspired. Even then, more than a year ago, I had no fear of cancer or death. There were a few things I feared, but none of the things I was afraid of then apply to me now. I was afraid of long term side effects from treatment. Now there is no long term. I was afraid of spending my remaining years in misery from harsh conventional treatments, and having cancer come back and get me anyway. Hence my attitude toward chemo and radiation. Now, all of that's a moot point.

But mostly, I was afraid of depleting our limited financial resources and leaving my wife with little to live on. Now, that doesn't seem possible. God has taken away all my sources of fear. There's nothing left for me to be afraid of. When you have no fear of death, the closer you get to it, the less anything else can make you afraid.

The results of my last PSA test are bad, but nothing to be afraid of. Symptoms are coming soon, but while I'm not looking forward to them, I'm not afraid of them. I know they will only last a short time. God keeps coming closer, and soon I'll be able to make out his facial features. Just like when I was a little boy, and I felt safe walking next to my dad, I feel safe now, because I have my Heavenly Father walking with me. He's bigger than any bully, any disease, and even death. Nothing can hurt me because he protects me.

He doesn't do this because there's anything special about me. He does it because it's who he is. I'm only this way because he revealed himself to me. I'm no angel, hero or saint. I'm just some guy. #waroncancer #bearingwitness

Wednesday, October 11, 2017

Last Times


Day 15 of hospice care. Still no symptoms.

I had my last flu shot and PSA test today. It's my last PSA test because that is not normally covered by Hospice. They're approving it one time for prognostic purposes. I just want the information so I can report on it. I want to monitor my disease and bear witness. But if I want to do that in the future, I'll have to pay out of pocket for it. So this was probably the last one.

And of course, it's my last flu shot because, well, I won't be here for the next flu season. Normally, flu shots aren't recommended for hospice patients - at least by Denver Hospice - because hospice patients usually don't leave home much. But I still go out and about, and intend to do so for as long as I can. I also work with kids. 'Nuff said. I get the flu shot. But it's my last one.

I find this phenomenon happening with increasing frequency these days. I'll be performing some mundane task, like driving somewhere or buying something, and I'll think, "that's probably the last time I'll do that." It's very weird.

I know you don't want me to talk like this. Just let me remind you that symptoms are expected by Christmas at the latest. I may look fine now, but I'm not. I did take the stairs today, though.

This happened last Saturday, on our way to the home of friends who live about a fifty minute drive from our house. We get together about once a month, and alternate being at each other's homes. We've done this for decades. On the way there last Saturday, I realized I was probably making that drive for the last time. According to our plans at the time, we wouldn't be driving back there until January. Will I be up for a fifty minute drive in January? Hard to say. I suspect not.

Two weekends from now, I will visit close friends for the last time. My wife is going with me, and I doubt it will be her last time. I imagine there will be some girls' weekends around Jan's pool for Sharon and Nikki in the future, but for me, it's the last time. I'm going to say my goodbyes. If possible, however difficult, goodbyes should be said in person. The more you love someone, the more true that is. And we love our friends very much. They are chosen family, and have been since the 1980's. We will hang out and have lots of fun, but when the time comes, we will say our goodbyes. Because it's the last time.

Wik, the band I'm in, is rehearsing for Prog Fest every week until the show on October 29th. I've performed at this annual event many times since 2006, but this is my last one. No way I'll be here next October or November. I'm happy to be onstage for this event one more time, and even more glad I'm not in charge of any of it. Normally, I'd already be thinking about what I want to do next year. But these aren't normal times. I know this is my last Prog Fest.

I'm as grateful as I can be that I expect to still be at full strength with no symptoms by then. But I don't necessarily expect that for the next performance on my schedule.

The winter show with The Littleton Conservatory Of Rock, where I am vocal and performance coach, is in January. Roughly the same time I'm unsure if I'll be able to drive for fifty minutes. The energy required for driving is minimal compared to getting ready for and putting on a show. But this show is very important to me, because it's my last one.

The object for me is not to perform. I'm a coach, and my job is to get the kids onstage, not myself. But I must admit that I do put myself onstage more than I should for one selfish reason; I want to sing with my singers. I want very much to do that one more time, but I have to approach this show differently than I have others. Because it's not certain I'll be able to take the stage at all by then. I might be in too much pain, or look so bad I don't want to get onstage. Or I might not be able to get out of bed.

So while I prepare to be onstage at times, if I can, I have to make sure someone else knows and can cover my parts if I can't. But believe me, if I can leave the house, I will be at this show, whether I can perform or not. Because it's the last time.

But it's not always bad to be doing things for the last time. Here is a list of other things I've done for the last time:

1. Go to the dentist
2. Go to the DMV
3. Buy tires
4. Pay income taxes
5. Endure another national election

And the list goes on. See, there is an upside!

While I walked into the doctor's office today to get my blood drawn for my last PSA test, there had been a fire drill, and the strobe lights were still on. I walked up to reception and saw my friends Anne and LaShay. It was my first time seeing them since our tearful goodbye about a month ago, which I recount in The Hardest Part. After we said hello, I joked that I'm so hot the fire alarm goes off when I walk in the door! Nikki, my doctor's MA, drew my blood for the last time. It was awesome seeing her too.

On my way out, I made an appointment to consult with my doctor. He was my oncologist, and now he's my hospice doctor. You may remember that I found out in our first visit with my hospice nurse that if my oncologist agreed, he could be my hospice doctor, enabling me to continue seeing my team for a while. I didn't lose them after all. They were right where I left them.

Apparently, it's unusual for a former cancer patient in hospice care to want to come in once a month to consult with him, but I'm an unusual guy. You may have noticed. I'm very happy and blessed to be able to say that, though this was my last PSA test, it's not my last visit to see my team. I'll keep seeing them for as long as I can get over there.

When the time comes, if we are close, let's make sure we say our goodbyes face to face. Even if we think it's not our last time seeing each other, we don't know that for sure. We never have. Treasure the moments you have in life. You never know when it's the last time. #waroncancer #bearingwitness

Wednesday, October 4, 2017

The Mysterious Box


Day 8 of hospice care. Still no symptoms.

We had appointments with two members of our Hospice team yesterday; my new nurse and our social worker. Both appointments were very informative and enjoyable. I'm starting to like my new team.

I should have said up front in Welcome To Hospice that too many people think hospice means you're on your death bed. That's the image we have in our heads, but it's not the reality most of the time. Most people do hospice at home. All hospice means is you're no longer treating your disease. Instead, you're focusing on quality of life.

Both ladies started by telling a bit about themselves, which I appreciated. I don't think I've ever had a medical professional begin that way with me before. The whole idea is build relationships and make sure everyone is comfortable with one another. That's one thing that sets Hospice apart, in my limited experience so far. I'm looking forward to building relationships with these people.

My nurse's name is Carolyn. We covered a lot during her visit, most of which I won't bore you with here. She did everything you would expect from a first visit with a nurse, including examine me, take my pulse and blood pressure, and all that good stuff. She asked about how I feel, and if I had any medical needs. Right now, I have everything I need. But what I was waiting for was to open that box in the fridge.

After our meeting last week with the admitting nurse, a couple of additions had been made to our house. First, according to instructions, we placed a magnet on our refrigerator. It has the Hospice phone number on it. This is the first time anything has been affixed to the outside of our refrigerator in the 40 year history of our marriage. My wife is adamant about not sticking things on the refrigerator. But things have changed.


I asked her which was worse, her husband being in hospice care, or having a magnet on the fridge, and she had to think about it. Underneath the magnet is the Do Not Resuscitate form, right where EMT's are trained to look for it. So that's a new addition to our decor.

Then there was the mysterious box in the fridge, with the warning sticker on the outside, pictured at the top. That sticker was the only thing that kept me from tearing it open as soon as it came last week, but I patiently waited for my nurse to arrive, like a good boy. Here's what was inside:


Right there in front is our main attraction, Morphine Sulfate. The party's at our house. Just kidding. It's at your house. But seriously, folks, I hope I don't ever have to open that bottle. It's for what they call "breakthrough pain." I'll stick with the spiritual breakthroughs, thank you very much. The rest of the meds were for various things that hospice patients tend to need at some point. She set up a bi-weekly visit on Tuesday mornings.

My nurse, my wife and I talked for at least an hour about various things. When we went to my office for the examination, she saw the VIP lanyards from concerts I have hanging there, and my collection of Neal Morse posters. She asked about him, and I found out my hospice nurse is a progressive rock fan! So when she comes back in two weeks, we will listen to some Neal Morse!

 

Shortly after Carolyn left, our social worker arrived. Her name is Desiree. Her area of concern is our mental, emotional, and spiritual well being. She talked to my wife at least as much as she talked to me. I assured her that I have a therapist and a pastor, so I don't think I'll need their chaplain or their mental health services. But they have many ways to help my wife, and I'm very grateful for that.

I stressed in both visits that my priority is not comfort, but lucidity, so I can interact with visitors, and continue to write for as long as possible. I don't know if there's anything in that mysterious box that will do that, but she said there are lots of options. Both ladies reiterated how good Denver Hospice is at pain management. I'm counting on it.

At one point, Desiree asked me if I was sad, or depressed, or afraid or something, and I said I'm in a really good place because I have no symptoms, and I have a sense of purpose. I talked about this blog, and how I'm working on turning it into a book. That's my main purpose. To bear witness.

But I also have another purpose. To pass something on to some young musicians I've become attached to, and to help launch one career.

When you have a prognosis like mine, it helps to have goal dates. Dates that you look forward to, and don't want to miss. The next date like that for me is in January, though I'm not sure of the exact day yet. It's the winter show for The Littleton Conservatory Of Rock, where I am the vocal and performance coach. My intention is to be a full participant in that show. But January may be pushing it for me, with symptoms expected by Christmas. So I have to teach all of my parts to someone else, so they can cover them if I can't. But just having that date to shoot for helps my sense of purpose. It's a box I'm looking forward to opening.

One my greatest joys in working with this group is two of the singers I get to coach. Ally and Payton. I should probably call Ally Alexis, since that's her real name, and nobody can agree on how to spell Ally. Ally has a heart of gold, and voice to match. She and I are similar types of singers. We both have a good ear, are good at singing harmony, blend well with other singers, and have great musical instincts. And we're both in awe of Payton.

You may have seen me refer to a young singer I call my protege. That's Payton. I haven't used her name until now because she's been underage. But she turns eighteen tomorrow. Then I'll be able to use her full name, and I'll have trouble shutting up about her. Not that I'll try. Payton is one of those once-in-a-generation type singers. Watch out for her in the next few years.

I had coffee with these two delightful girls yesterday to celebrate Payton's birthday. Payton's mom Marni was there, and took this picture of us.


Ally's on the left, and Payton's on the right. Our time today was about celebrating Payton's birthday, and about passing something on. I had a mysterious box for someone else to open. I was able to bless her in a way that will hopefully help her get started long after I can't help her in person anymore. Because it's her career I'm supposed to help launch. Helping Payton as much as I can for as long as I can is one of the things I'm supposed to do with the rest of my time here.


I received another blessing yesterday as well. A mysterious box arrived in the mail. I opened it to find a piece of original artwork by Padi Faraji, a friend I've made online through my blog. I think we connected through Fabian Bolin of WarOnCancer.com. Padi was one of my first Twitter followers. She followed me on Twitter before we became Facebook friends. Her comments on my blog have always been very sweet. She is an amazing artist, as you can see. Follow her on Instagram to see more of her beautiful artwork. She sent me this piece all the way from Japan. We have it in the perfect spot in our home. It's indescribable to have friends in all parts of the world who I will never meet face to face, but who still care this much. I'm deeply grateful to you for this, Padi. It means a lot to me.

For me, this was a day of blessing. A day of mysterious boxes, both to give and receive. Yes, I'm meeting with my Hospice team and discussing end-of-life issues. But both meetings were a blessing because of the people. Because of the relationships that were begun. I received a blessing from a friend who lives far away. And my meeting yesterday afternoon was a blessing because of the relationships. But this time, I got to bestow the blessing instead of receiving one. And that's much more fun. When Jesus said it's more blessed to give than to receive, he wasn't making up some new law. He was stating a simple fact. The giver gets the greater blessing than the receiver. I have been blessed, so I must be a blessing. Otherwise, the blessings I receive go to waste.

There are more hospice team members I have yet to meet. I won't need a Nurse's assistant to help me bathe or anything anytime soon, but there is a therapy I expect to start that I'll tell you about when we begin. It's something my friend Amber would call "hippie crap." Only she wouldn't say crap. I am an aging hippie, so I'm looking forward to trying it. Another mysterious box to open.

The rest of my life will be a series of mysterious boxes. I just hope I can give as many as I receive. #waroncancer #bearingwitness