Tuesday, October 31, 2017

The First Symptom

Day 35 of hospice care. I now have symptoms.

It seems a bit incongruous to have a picture like this at the top of a post as serious as this one. But I won't let this disease keep me from having fun. But before I get to my visit with my team, I have to tell you about my appointment this morning with the main member of my new team, my hospice nurse, Carolyn.

She arrived at our house at 10:30 this morning. For the first time, I had news for her. I told her about the trouble I've had sleeping. She didn't think that was a symptom of my cancer. I told her that I think it might be the last batch of cannabis oil I got from my caregiver. I'll talk to my caregiver and try a different batch before I ask for sleeping pills. That oil has never kept me awake before. Just the opposite.

I'm actually glad for the mostly sleepless night I had last night. It gave me a chance to write The Last Encore. I'm glad I was able to report on that important event in my journey. But now we're back to hard news. Very hard.

After I told Carolyn about the insomnia, I told her about nausea and weight loss I've been experiencing for a few days. She considers this a symptom of my cancer. If true, this is very disappointing. Remember, I wasn't expecting symptoms until closer to Christmas. If they started before Halloween, that's really bad news.

She told me about a drug for nausea in my Comfort Kit, the Mysterious Box in my refrigerator. Ondansetron. Isn't that a Transformer? After she left, I was feeling pretty nauseous, and took one of the pills. I hated opening that first bottle of pills from that box. It seemed like a concession. It makes it more real, somehow. I'm now using something from that box I never wanted to open again. And only five weeks after starting hospice care.

The bottle said nothing about taking it with food, so I took the pill on an empty stomach. It made my nausea worse. I had to lie down until it passed. That wasn't encouraging. For a while I wondered if I'd be able to make it to my doctor's office for my consultation. But I managed to eat something, which settled my stomach a bit, and I went. But before I did, I put on my red suit.

Today is Halloween. When I set this appointment, my friend LaShay told me they were dressing in 1980's garb for the holiday. So I decided to join in the fun. I still have all of my skinny New Wave ties from that decade. I thought I'd wear one of those ties. But then I remembered that Sharon had made me a bright red suit in the 80's, modeled after the one Huey Lewis wears in a music video. As you can see, she did an amazing job.

When she made that suit in the mid 80's, I had a 28 inch waist. The last time I tried these pants on, I couldn't fit into them. I probably weighed in the upper 130's at the time. Now I'm losing weight because of the nausea, so those pants fit again! I knew that's what I should wear to the office. I wasn't just wearing 80's clothes, I was going as someone!

When I walked in, they all loved my outfit, and we took the picture at the top. It was really fun. I almost blinded my doctor when he walked into the room, though. I offered him my sunglasses. It was great to see him. I told him about my nausea, and he wasn't ready to say for sure it's a symptom, but he agreed that's the most likely explanation. He recommended I try taking Ondansetron sublingually, so it doesn't hit my stomach so hard. I'll try that next time.

But I also told him that I had discovered that what they say about medical marijuana is true. It really does help with nausea and appetite. Being a medical marijuana patient, I do have some, though I prefer the oil. But the suppositories never helped with appetite. Apparently, it's best to smoke or vape it for that. So yesterday morning, after I woke up feeling very nauseous, I decided to try it. Thirty minutes later, I was hungry. So that's a solution I can use when I don't have anywhere to go. I'll also try CBD, which is non-impairing. Better that than a pill, in my opinion.

But one way or another, we have to get a handle on this. Gaunt Cancer Guy is knocking on the door. Sooner or later, I'll have to let him in.

My doctor and I talked for a while, and I finally pressed him for a new prognosis. I had told the office I wanted one based on the new PSA number, 13.2. He said my cancer is growing at a steep rate. He knows that my cancer moves very fast, and keeps growing faster. But he wouldn't give me a number. All he would say is "months."

At the same time, he acknowledged that the appearance of my first symptom this early is disappointing. It's not likely to get any better from here. It will only get worse. Everything has happened sooner than predicted with this disease. And the pace keeps increasing.

While my doctor wouldn't give me a due date, here's what I know. They don't put you in hospice care unless you have six months or less to live. I've been in hospice care for 35 days. You do the math. And that's the maximum. If past is prologue, it's likely to be less. Maybe much less.

But I didn't let my discomfort or disappointment keep me from having fun today, nor will I in the future. And I still believe that, despite the odds, if God wants me here, I will be here. I still have things to do, goals to meet, and people to love. I'll keep doing that for as long as I can.

I've never written two blog posts on the same day before. But I've never had two such important events happen so close together, either. The last encore and the first symptom are connected. It's all one story. A love story. A story about a dying man who plays in a rock band with teenagers and wears red suits to the doctor's office. A story that's funny and sad at the same time. A story of meaning and purpose. A story with a beginning and an end. And all good things must come to an end. #waroncancer #bearingwitness

The Last Encore

Wik performing The Great Gig In The Sky

Day 35 of hospice care. Symptoms may have begun. I hope to find that out today. Stay tuned.

Prog Fest was everything I hoped it would be, and came with unexpected blessings. It was exactly what I needed. One more chance to perform with friends, and another chance to reconnect. A chance to say goodbye.

I've been having some trouble sleeping lately. I'm writing this at 1:45 AM right now because I can't sleep. But Friday night, I had a great night's sleep. I was rested and energetic for Wik's rehearsal on Saturday, the day before the show. But I always have had trouble sleeping after an evening rehearsal. This one started in the late afternoon, but that was enough to keep me from sleeping well. So come Sunday, the day of the show, I was running on fumes. As a result, my energy and balance were not what I hoped they'd be. But adrenaline is a wonderful thing. Adrenaline and love carried me through.

Sharon and I arrived early. I was needed for sound check, so we showed up around 3:00 PM. The show started at 4:00 PM, and lasted until 10:00 PM, an hour later than scheduled. Typical Prog show. Our friends Dave and Stacey showed up at about the same time so we'd have a chance to talk. But our conversation kept getting interrupted by more friends arriving who wanted to talk to me.

Two friends from my wedding singer days, Jerry and Kathy, showed up out of the blue. I had no idea they were coming. It was a touching reunion. Jerry's wife Becky had died of cancer several years ago, and a drummer we had all worked with for years had died the year before, also of cancer. I told them that after Becky's memorial, I had taken to telling my friends from those days that I hoped the next time I saw them, it wasn't at a funeral. I also found myself wondering, after two deaths in that circle of friends in a year, who would be next. I never thought it would be me, I told Jerry and Kathy. Cancer again. Stupid cancer.

More friends came, and as usual, our party consisted of two tables put together. But there was one reunion that stood out.

I found out a day or two before the show that my high school girlfriend and her husband were coming. Joy and Mickey. I hadn't seen Joy since 1973, my senior year of high school. You might think this had the potential to be weird or awkward. I wondered if it would be. It wasn't. It was awesome. She and Sharon got along well. Joy and I talked about old times. We remembered what had connected us.

I enjoyed talking with her husband too. A great guy. At one point, the fact that I had broken up with Joy back in the day came up. She didn't remember why, but I did. I told her it was because I had felt it was God's will. I've often looked back on that decision as a bonehead move by a dumb teenage boy, but shortly after that, her family moved away, and I went off to college, where I met Sharon. Joy went to college elsewhere, and met Mickey. Mickey pointed out to me that I had probably been right. It wasn't God's will for us to stay together. We were both supposed to marry someone else. Sharon and I have been married for 40 years, and Joy and Mickey have been married for 36. God does all things well.

Wherever I went that night, friends wanted to talk and embrace. Love and sorrow were in the air. But reunions with old friends and love exchanged between so many more were only half of the blessing. I also was there to perform in public for the last time.

At last year's Prog Fest, (an annual progressive rock festival put on by The Colorado Art Rock Society) I put together a huge ninety minute set of "bucket list" songs. I had a veritable cast of thousands, and it was a mammoth undertaking. This year, I was only involved in two easy sets for me, and I was a sideman rather than the leader in both. Perfect for this stage of my life. I was asked to sing the last song of the night, an old Genesis classic that I've known for decades. I only had to show up for one rehearsal for that. Easy peasy. The other set was the public debut of the band I'm in with my friend Todd and some talented teenagers. Wik.

Let me put this in perspective. I'm a 62 year old Stage 4 cancer patient in hospice care, and I'm in a band with teenagers. Who does that? I guess we know who does that. We had been rehearsing for this performance for at least six weeks, maybe longer. Prog Fest performances are often done by ad hoc bands, and tend to be a little under-rehearsed and sloppy. That's part of the fun. But we wanted to get this performance on video for the launch of Wik's Facebook page. So it had to be polished.

The band played the first two songs without me. We've written one original song as a band so far, and they performed it in front of an audience for the first time. It rocked. When I took the stage, I made a joke about how last year was my big finale, but I never could resist an encore. This was my encore. The last encore.

It was very emotional for me. I was only onstage for three out of the five songs Wik played, but I was loving every minute of it, whether I was up there or not. Everyone nailed their parts. The whole band could feel the energy of the moment. And Colorado progressive rock fans found out about a very special singer. My protege, Payton Roybal.

Payton hadn't performed since our 40th anniversary party in July, yet somehow, she was easily better onstage than I've ever seen her. Intensity poured from her the entire set. And she saved her best for last.

Our last two songs were from Pink Floyd's Dark Side Of the Moon; Time and The Great Gig In The Sky. The Great Gig In The Sky is one of the greatest vocal solos in the history of rock. We chose it specifically to show Payton off. She nailed it, beyond even what I was expecting. And my expectations were high. Every time I think I've set the bar high for her, she exceeds my expectations. I had heard her sing it in rehearsal several times, but she sang it last night like I'd never heard her sing it before. A video of it is on the Wik Facebook page now.

I did the speaking part that I refer to in To Know Or Not To Know. The one that starts with I'm not frightened of dying. Tears were shed at our table and elsewhere. It was a special moment. Afterwards, Jerry and Kathy came up to me to say their goodbyes. Kathy was in tears. My little speaking part had hit her hard. Kathy has always loved me, and the feeling has been mutual. Hearing me say those words was hard for her, as it was for many there. But it was the exact right song for that moment. And I was the exact right person to deliver those lines.

I'm bursting with pride today because of how the band performed. And I'm humbled by the protege who will surpass her mentor. Who already has, in many ways.

I'll meet with my doctor and nurse tomorrow. Actually, it's today, since it's 2:47 AM as I write these words. We’ll discuss the possible appearance of my first symptom, and get a new prognosis from my last PSA result. It’s a big day. Your prayers are appreciated. I'll write about all of that after I come home and share the news with those closest to me. But I couldn't let this important event in my life go unreported. I have to bear witness. My next post may bring bad news, but this one is about love and completion.

My performing career is now complete. I've performed my last encore. And I felt the love all the way through it. #waroncancer

Monday, October 23, 2017

Saying My Goodbyes

From left to right: Sharon, me, Callie, Nicki, Jan

Day 27 of hospice care. Still no symptoms.

It’s been a long weekend of goodbyes, extending into Monday. I went into it with the intention of saying my goodbyes to some special people, but I didn’t end up saying the G word all that much. The past three days were really about the L word.

I met with my nutritionist Katie today. I’ve talked about her before, especially in two posts; My Manna From Heaven and The Road To Zero. For those who remember her real name, she asked me to use this alias for my blog and book. I am happy to protect her privacy. Not everyone is a showoff like me.

Katie saved me from unintentional weight loss twice during my journey. What I learned from her was priceless. I learned how to eat to keep weight on. This is why both of those chapters will be in my book, Bearing Witness. I know I’m not the only skinny guy with cancer who battles that problem. If you are and you do, read those posts.

When I said goodbye to my oncology team a few weeks ago, I found out Katie had left. So I’d missed my chance to say goodbye to one of the most valuable members of my team. Well, I couldn’t allow that to happen. I had to track her down. I found out she was now working at University Hospital, the same one where I had my consultation for clinical trials. In fact, Katie now works for the oncologist who interviewed me. University Hospital is a huge complex with several campuses, so it was pure luck that I called the right place and found her fairly easily. Or maybe it wasn’t luck.

I left Katie a message last week, and she was kind enough to call me back. She remembered me, and though I’m no longer her patient, being in hospice care, she agreed to meet with me so I could say my goodbyes.

I'll admit I got a little emotional when we met today. I owe this young woman a lot. I asked her if she gets that kind of thing much, patients tracking her down to thank her and say their goodbyes. Not very often, she said. Many patients have difficult memories of their time in treatment, and don't want to go back there. But I've made plain how much I love my team. I still get to see the rest of my oncology team when I go in for consultations once a month, but Katie won't be there. That's why I had to find her.

I gave her printouts of the chapters in my book about my consultations with her. That's when I learned she didn't want me to use her real name. I told her that she had the misfortune of having a patient who is a born performer, and can't do anything without an audience. Including die. My natural tendency, as you know, is to blow up everyone I love on social media. But not everyone wants that. So before my book comes out, I'm methodically asking people's permission to use their name in it. If I've talked about you in this blog, you may get that question.

I also gave Katie a cross pendant. I figured she needs one, since she helps cancer patients every day. Katie and I didn't have a real friendship. We only met a few times. But I couldn't just let her slip out of my life unnoticed. I had to say my goodbyes and thank her for all she's done for me. It's who I am now.

Last weekend, however, was about doing this with real friends. As real as real gets.

Last Friday, Sharon and I flew to the Dallas/Fort Worth, Texas area to visit our close friends Jan Koch, Tony Koch, and Nicki Morgan and their families. Tony and Nicki are Jan’s son and daughter. Sharon and I watched them grow up when we were in our 30’s and 40’s. Our families have been close friends since the 1980’s. Now, Tony and Nicki have families of their own. I wrote about this family in Introducing The Kochs. Their father Galen passed away almost seven years ago. I’m ashamed to say that this was our first visit there since his funeral.

My first reason for wanting to visit them at this time was to say my goodbyes to these three people. I thought it would be my last chance to do so face to face. But in most cases, it was impossible to say goodbye. We know we will see each other again, either here or there. But I’m hopeful that I’ll see at least one of them here again. On this side of the curtain.

Jan is the kind of friend that’s like family, and we always pick right up where we left off when we see each other, no matter how long it’s been. Jan and Sharon have been friends for decades, and Jan made Sharon a promise this weekend that meant the world to me. They will have something in common soon that none of their other friends will understand. The fact that Sharon will have Jan in the coming years is an immense source of comfort to me.

My time with Tony was very heartfelt. He reminds me so much of his dad, it's spooky. Right down to his laugh. When Tony laughs, I hear Galen. But I also see Galen in Tony's calm, thoughtful manner. Many of our conversations reminded me at once of serious conversations Tony and I had when he was growing up, and philosophical conversations I had with his dad. Tony is a great man that I feel blessed to call family. We said our goodbyes on Saturday night at Tony's house. It was a very meaningful time.

Nicki, her husband Josh and their three kids live with Jan right now while their new house is being built. So we got to spend much more time with them than we would have otherwise, which was perfect for me. I know Nicki’s very frustrated with the amount of time it’s taking for their house to be ready, but I was glad, because it meant she was with us.

I gave Nicki this montage, printed and framed. It's shows how our relationship has pretty much stayed the same since she was very young.

Nicki and I have had a special relationship and a powerful bond since she was an infant. She’s in her early thirties now, and not having had children of my own, she’s the only person in my life that I’ve had that kind of bond with at every stage of her life, from infancy to adulthood. She’s the closest thing I have to a daughter.

When the time came for me to say goodbye to both Jan and Nicki, I couldn’t do it. All I could do was tell them how much they mean to me. All I could do was make sure nothing was left unsaid. That’s what I mean by saying my goodbyes. I might not actually say goodbye. I might just make you sit still while I tell you how much I love you.

But in the midst of goodbyes, there was one big hello. One of my goals for this trip was to bond with Nicki’s daughter Callie. From everything I’d heard, she’s just like her mom was at that age. Which meant I had to meet this girl, come hell or high water. I wondered as we planned this trip and as we traveled whether meeting Callie would meet my expectations. Callie is five, and measuring up to five year old Nicki is a tall order. But I also wasn’t sure Callie would warm up to me. You never know with kids. So I tried not to get my hopes up.

The rumors were true, beyond my wildest dreams. It took maybe twenty minutes for Callie to climb up in my lap. As the weekend went on, we drew pictures, played games, and I pushed her on the swing. Each time we went out to eat, she wanted to sit next to me. We bonded almost instantly, just like her mom and I did almost thirty years ago. It was amazing. Nicki’s three year old son Kellan also seemed drawn to me, and I’m told he’s normally shy. The first night, Nicki said it was like “suffer the little children and let them come to Mark.” I loved it.

I doubt Kellan will remember me, but I’m sure Callie will. Sharon and I made an impression on her, and she definitely made one on me. What I wouldn’t give to be in her life all the way to adulthood like I was with her mom. Like Sharon will be. But being remembered will have to be enough. That's true for so many young people I've gotten to know since I was diagnosed. I wish so much I could see you reach your potential, but being remembered will have to be enough for me.

The G word for this weekend wasn’t Goodbye, it was Gratitude. I am grateful for a nutritionist like Katie, and friends like Jan. I am grateful for beautiful children who become admirable adults, and who are like what I hope my children would have been. I am grateful for the time I got to bond with one little girl. I am grateful for love.

Saying my goodbyes doesn’t necessarily mean saying goodbye. It means making sure nothing is left unsaid. One of the few good things about dying this way is it gives me time to say my goodbyes. It gives us time to say whatever needs to be said. That’s what I did these past three days, and it’s a big part of what I’ll continue to do until my time comes. When it’s your turn, we might not even say the G word. We might just talk about love. #waroncancer #bearingwitness

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 to 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