I hear many people talking about what a bad year 2016 was. Their measuring stick seems to be the sheer number of celebrity deaths, or the worst presidential election ever, or both. If I were in a different place in life, I might agree. But I tend to personalize years much more now than I used to, now that my remaining years can probably be counted on the fingers of one hand. There’s been a lot of bad this year for my wife and me, to be sure, but also a lot of good. And I wouldn’t change the bad if it meant losing the good.
2016 was my first full calendar year with cancer. The changes that have taken place this year have not been as stark as they were in 2015, a year that began with my being a worship leader in a church and having lots of studio work and ended with my being diagnosed with aggressive, inoperable prostate cancer, and well on my way to retirement. I had begun this journal in October of 2015, and wrote a retrospective post about that year that you can read here.
But it’s been a very eventful year nonetheless. In this post, I want to look back, take stock, and count my blessings. I’ll try to just hit the highlights, but you know me. I may have a few things to say.
In my first post of 2016, I said this: Remember my post on thankfulness? If we thank God for the mountains, we also have to thank him for the valleys. Without the valleys, the mountains don’t exist. Without mountains and valleys, all you have is Kansas. How true that has been this year. This year has been a series of mountains and valleys.
In January of 2016, I was battling weight loss. I’ve always been naturally thin, and had a high metabolism. It’s great when you’re in good health, but not so great when you have metastatic cancer. Much of this journal (which I had not yet turned into a blog – I was still only posting to a smallish group of friends and family on CaringBridge) was dedicated to my effort to keep my weight up.
At the beginning of this year, I was posting almost every day. About every little thing. I don’t do that anymore. You’re welcome. If you’re one of the blessed souls who have read through this entire blog, you know that’s true. Now I wait until I really have something to say.
On January 27th of 2016, I had my first appointment with my oncologist. I liked him immediately, which was a welcome change to how I felt about the urologist I had previously. My oncologist is a no-nonsense, just-give-me-the-facts kind of guy. I appreciate that. That’s what I want in a doctor. He also respects my treatment choices, which not all doctors do.
At that visit, he clarified my diagnosis for me, and gave me my options, from his perspective. He works “for the man” (his term) and doesn’t make any more or less money based on the treatments I choose. I like that. It helps me to trust him.
At the time, there was controversy about a suspicious spot that looked like metastasis on my left upper arm bone. He recommended an MRI of that specific area. He used an image from that MRI to consult with several experts about it. I’ve posted this image before, but in case you haven’t seen it, here it is again.
It looked scary, but it turned out to be nothing. But because of my high Gleason score, we suspected that I had microscopic metastasis, and we turned out to be right. More on that later. But at the time, the news that this spot was not cancer was very good news indeed.
When it was decided that the spot in the MRI wasn’t cancer, I started getting pressure to have radiation treatment to my prostate area done. I was told it could be confined to the prostate only, and it could be a cure. But I hesitated. I met with a radiation oncologist who tried to persuade me with very low risk percentages, but I wasn’t convinced. I thought I would either have unbearable permanent side effects and reduced quality of life, or I would end up being metastatic a little while later anyway, so why go through it?
Nobody was happy with my hesitation. Not my doctor, my wife, or my friends. But I just couldn’t go through with it. It turned out I made the right call, but nobody knew it at the time. Certainly not me.
The events I’ve been talking about happened in January and February of 2016. A few other significant things happened in February. Sometime in mid-February, I reconnected with my dear friend Nicki, who I had lost touch with after the death of her dad five years earlier. I’ve known Nicki since she was two years old. After her dad, who was one of my closest friends, passed away, I made Nicki a promise that I would do my best to be a surrogate dad to her, as much as I could. But I didn’t keep my promise. It was only when I knew I had cancer that it became urgent to me to reach out to her. Now Nicki and I have reconnected in a powerful way. I now call her the daughter I never had. This year wasn’t just about cancer. It was about relationships, more than anything.
|Top: Nicki and me when we were both much younger. Bottom: From her visit here last summer.|
On February 20th, I received my first cross pendant as a gift from my friend Paul. This cross pendant was made by his cousin Tom, who makes them to give away, as a ministry to cancer patients. This image of it has been displayed in many of my posts.
Recently, my wife started making them, and now I’m able to bless people with them when I feel led to do so. It’s such a blessing to send these out to my brothers. And it’s cool having one in every color!
So other than finding out I wasn’t Stage 4 (as far as they knew at the time, anyway) receiving a gift that would turn into a ministry for my wife and me, wrestling with whether to undergo radiation treatment, and reconnecting with my surrogate daughter, I didn’t have much going on in February. Except for a reunion concert with a band I used to be in, and my second Lupron shot, which was actually on March 1st.
My first six months on Lupron had not been fun at all. Oh sure, I got all squishy with emotion and practically walked around glowing, like I was pregnant or something, but behind closed doors, it was a rocky road. And Lupron provided the rocks. My first shot itself was horrific. It was very painful and made me stiff for days. I suddenly got very sensitive to cold, and felt numb. And that was just the beginning. Hot flashes, mood swings, loss of libido, all the joys of menopause forced on a man. If this is how hormonal women feel, it explains a lot.
So I really didn’t want that next shot. But the first shot had been at my old urologist’s office, and apparently, the tech there who gave me the shot wasn’t very good at it. I expressed my fears at my oncologist’s office when my next shot was coming up at the end of February, and they assured me that I’d get their best shot giver. Her name is Melanie, and she’s given me my last two shots. I’ll make sure to schedule my next shot on a day that she’s in the office. I could hardly feel the two Lupron shots she’s given me. Ask for Melanie by name.
It also seemed that my body had adjusted to Lupron when I got my next shot. Its effects have gotten milder for me. The way it lays emotions bare continued to be a problem, however. The emotional roller coaster continued at our house.
March was the low point of my battle with weight loss last year. My normal weight is 130 pounds, but as I’d gotten older it had gotten up around 136 to 138. After I was diagnosed and started treatment, my weight crashed. At its low point, my weight was down to 120 pounds for a few days in a row.
So I decided to see a nutritionist. She helped me learn how to eat to gain weight. It took a while, but my weight has been stable in the 128 to 132 pound range for the past few months. Holiday treats are pushing it a little higher right now, but that will end soon.
But the most significant thing that happened in March of 2016 is that’s when I took the step of converting my CaringBridge journal into this blog. That’s why, if you look at the list of posts in the sidebar, there are so many in February. I didn’t really write all of those posts in February. February is when I copied and pasted them into this blog. The first post that I wrote here and shared on Facebook was The Ministry Of Silly Walks, on March 1st, the day of my second Lupron shot. I don’t know why the date on the post says March 2nd. It was definitely the day of the shot. I remember that.
Sharing this blog on a wider platform, and in prostate cancer support groups has made an immense difference in my life. On CaringBridge, it was just about keeping friends and family in the loop. With this blog, it’s much more about being an encouragement to my brothers and their loved ones. Since I began sharing this blog on Facebook, I’ve made some wonderful friends. I’ve connected with people that I never would have otherwise. And the readership keeps growing. I’m humbled and grateful for all of it.
When 2016 began, my wife and I were without a home church. We are both lifetime churchgoers, so we were a bit disoriented during this time. We had always had a home church. But when the church where I led worship closed in May of 2015, we drifted for quite a while. It wasn’t until late March and April of 2016 that we felt God had brought us to the right church, one that met our needs at this time in our lives. We’re still part of that church today, and love it there. It’s called The Table Community Church. If you live in the Denver area and are looking for a church, come join us.
There’s an old saying. Church people go to church. We are church people, and for us, it’s much better to end the year with a church than without one.
In April, my disability claim, which I had been pursuing for months, was denied. My wife and I were crushed, and I was advised by everyone to appeal the ruling. But I felt the Holy Spirit clearly indicate to me that I should not appeal, but just trust God. We did that, and some amazing friends stepped up and began supporting us financially, and we’ve never looked back.
That turn of events was a major emotional wave for both of us, and I saw no end to the ups and downs I seemed to be locked into by Lupron. But also in April, one crucial component to my emotional recovery began; Therapy. I highly recommend it, especially if it’s covered. It’s made a huge difference for me. Therapy helped me get back into a mindset where I could get work done. It helped tremendously with some anger issues I was having. We’re well past my original reasons for going now, but I don’t think I’ll ever stop if I can help it. I can look not too far down the road, and I can see what’s coming. I know I’m going to need counseling for the rest of my life. A huge thanks to my friend Sandi for helping me find the right therapist.
Another component in my gaining some emotional equilibrium back also happened in April. I began taking the supplement 5-HTP, on the advice of my close friend Deanna. 5-HTP worked wonders with my hormonal mood swings. It helped me let go of what was bothering me, and there was a lot bothering me then. After months of counseling, and my body growing acclimated to the effects of Lupron, I no longer feel like I need to take 5-HTP every day like I used to. I only take it now when I feel upset, or I feel like I may get upset about something. But for a few months, it was a Godsend. My wife said it gave her husband back to her.
In May, we lost our health coverage and had to find a new provider. But that situation only lasted for a few months, and our old coverage was reinstated as of August 1st. That was a real answer to prayer.
We had two pet losses during April and May. My wife’s cat Midi died on April 8th, and our dog Ziggy (he was also her dog) died on May 9th, just over a month apart. We still have one dog and one cat, but they’re both “mine.” The house is much quieter now. They are both missed.
|Ziggy in the prime of life, Midi on Sharon’s lap.|
June is when I began my work as vocal coach for the rock band school for kids that I’ve talked so much about. I had no idea when I started with that how much fulfillment I’d get from it. I love every minute of it. It means a great deal to me to be able to pass some of the knowledge I’ve gained on to young musicians in their formative years, and to get to spend so much time with my friend Todd and his family. Sometimes I have to leave a rehearsal early because I’ve “hit a wall,” but I want to keep doing it as much as I can, for as long as I can. Our next show is coming up soon, and I’m looking forward to rehearsals starting up.
On July 1st, my wife retired from her job of 25 years to stay home with me during this time in our lives. I’ll admit, I had a bit of trepidation about this, seeing as how I’ve had the house to myself all day, five days a week for so many years. But retirement has been great. It’s been awesome having her here, and having the freedom in our schedule that retirement brings. It’s also nice that she can go the the doctor with me when it’s called for. We’re still figuring this whole retirement thing out, but I can tell you one thing for sure. There’s nobody I’d rather spend my days and nights with.
39th Anniversary Brunch at Red Rocks
I had a blood draw on July 8th and an appointment with my oncologist on July 12th. That was when the trouble started. That’s when my PSA began to rise, from 1.42 to 1.97, indicating that Lupron was losing effectiveness. But my oncologist wanted to wait and make sure, so we scheduled another blood draw and PSA test for August.
The next two months were tough. On August 20th, we helped our dear friends Derek and Amber move to their new place in the mountains of Colorado. It’s hard for me to explain the place that they hold in my heart. They only live 90 minutes away now, but that’s enough to make it hard for us to see them, especially in the winter. I’m very proud of them for seizing the opportunity to live their dream, but when we pulled away from their old house here in Denver after helping them load up the U-Haul trailer, I was inconsolable for about two days. That was just the start of a stretch of bad news for us.
|Taken at Derek and Amber’s moving away party last August|
On August 31st, I got the news that my PSA had risen to 2.7, up seven tenths of a point in six weeks. This result prompted my oncologist to order a CT scan and bone scan to see if any new mets could be found. Those scans took place on September 7th. The results came in two days later. On September 9th, 2016, I was diagnosed Stage 4, with metastasis to spine and ribs. The white spots you see in this scan are cancer.
The next week, on September 15th, I had another consultation with my oncologist, and for the first time, I asked him for a prognosis. He said if I continue to respond to treatment the way I have so far, I can expect to live another year or two. If we happen to find a treatment that I respond to better, I could maybe live another three to five years. That was exactly what I was expecting him to say, but it shook me anyway.
He also said he was glad we hadn’t gone ahead with radiation treatment. He thought I would have ended up being Stage 4 anyway. So I was right to follow my instincts, and I’m glad I did.
Two weeks later, after another PSA test, I found out my PSA had risen more than two full points in four weeks, to 4.77. My cancer was definitely on the move. So I started on Xtandi, which are pills I take every morning now in addition to my Lupron shots every four months.
But September wasn’t all bad. I got to officiate the wedding of some chosen family in September. That’s something I’ll always cherish. If you remember little Gloria and her sister Maxine from my recent post, The Things You Think Of, this was their mom’s wedding. Gloria was the ring bearer, and Maxine was the flower girl.
And by far, the most incredible blessing of 2016 happened in September. Our closest friend Nikki moved back here from California. I can’t begin to quantify what her being back here means to my wife and me. It makes all the difference in the world. All the bad news that got thrown at us in August and September doesn’t seem quite as bad because Nikki’s back home.
|Nikki with us last Christmas|
Like magic, with Nikki’s arrival, the bad news ended, and the good news began. I began taking Xtandi in early October. Two weeks after starting it, I had another PSA test done. My PSA was down to 1.3, the lowest it’s been since I was diagnosed. This news was met with widespread celebration, and for good reason. I hadn’t realized what a stretch of bad news it had been until I finally had some good news. As far as I know, that’s where the number still stands. My next PSA test is in January.
In October and November, I spent much of my time and energy preparing for my last big public performance, which took place November 20th. If you’ve been reading this blog, you know all about it. You may have seen the YouTube videos of it. It was a very special night for me.
On December 1st, I began the Rick Simpson Oil suppository treatment program that I talk about in my post, Tiny Popsicles. It’s going very well so far. No results yet, but I’m tolerating it very well. I’ve moved up from taking the 350 milligram suppositories twice a day to the 500 milligram ones twice a day, which puts me at 1,000 milligrams per day, which is considered the therapeutic dose level to kill cancer.
I actually love the way it makes me feel. Not high or stoned, just good. Sometimes within the first hour of taking one, I feel a slight buzz, but it’s not enough to keep me from doing anything, including work or drive. And boy, does it help me sleep. I haven’t had a bad night’s sleep since I started taking them. They don’t make me sleepy, but when I lay down to sleep, I fall asleep right away, which is not like me. More importantly, when I get up during the night, I fall right back asleep when I go back to bed. I’m getting a good ten hours of sleep every night now. That can only be helping.
I’m sorry if this post went on too long, or if it ended up reading like your aunt Agnes’s Christmas letter, but I’ve hit as many of the important events as I feel I can justify in this long post. There were many others, but if I included them all, the internet would run out of space.
Before I close, I have to mention the names of the new friends I’ve made this year, both online and in person. You have helped make this year a real blessing. I’m not doing last names or tags anymore, but you will know who you are. Very early on when I started sharing these posts in support groups, Miki and I became friends. Right around the same time, there was Robert, and Pete, and Peter, and Christopher and Lori. I can’t imagine the last year without you guys. It’s hard for me to believe that we’ve never met face to face! But one day, we will.
The list of new in-person friends is not as long, but just as meaningful. Garrison. Laura. Sandie. We love each of you, and can’t wait to see what the new year brings in our friendship.
2016 was a bad year in many ways, but when I count up all of the blessings, for me, it more than balances out. My cancer got worse, but my circle of love grew exponentially. I am closer to God than I was at the start of the year, and life at home is better now than it was then. So many friendships which began in 2015 deepened in 2016. Janice. Todd and Sandi. Derek and Amber. Thanks for being there, all of you.
I hope and expect to be sitting here writing another retrospective post titled 2017 next year. But whatever happens, thank you for sitting in the mud with me in the meantime. #waroncancer