What Gives Me Hope

After I posted Life Expectancy, where I revealed the prognosis my doctor had given me, someone asked in a comment if my doctor had given me no hope. It wasn’t the first or last time that someone equated hope with beating my cancer, or significantly extending my life. The comment bothered me, but I struggled to explain why. At that time, I think I chalked it up to my faith, though I didn’t say so in a reply.

After I began taking Xtandi, I happened to run into a guy I’ve known for years. He asked how I was doing, and I told him I had just begun taking this new medication. He said that he wanted to give me hope. He attempted to do so by saying that he had been taking Xtandi for ten years, and it had kept his cancer under control for all of that time. The difference, for me, between his comment and the previous one is that this man is a pastor with very similar beliefs to mine. He used to be my Sunday School teacher. I’ve sung at a church he used to pastor. But though he believes very much as I do, he also equated hope with longer life.

If you’ve been reading this blog, you can probably guess that I don’t place my hope in the possibility of living longer. Beating cancer is not what I hope for. I’ll certainly take all the time that Xtandi and other treatments give me, but treatment doesn’t give me hope. In yet another installment of what I’m calling my “Explaining Myself” series, I’ll try to put into words why that is, and tell you what does give me hope. Because I haven’t lost hope. Not at all. Hope has simply been redefined for me.

The trouble with placing my hope in Xtandi, or any other treatment, is this: If I hang my hopes on the low PSA number that I got after two weeks of taking it, what happens to my hope when my PSA inevitably starts to rise again? If that’s where my hope is, I’m vulnerable to despair when the medication stops working. So I can’t place my hope in that.

Dear friends tell me, from time to time, that they believe a cure will come in the near future. Call me cynical, but I don’t believe for one minute that the for-profit health care system in the U.S. has any interest in finding a cure for cancer. Cancer treatment is too profitable. A cure would put a huge multi-billion dollar industry out of business.

Placing my hope in an industry that has a profit motive to keep me in treatment for the rest of my life would be foolish indeed. The guy who told me that Xtandi should give me hope also told me that it costs $9,000 per month. Why would such a profitable system give up a cash cow like that by coming out with a cure? No hope there for me.

I’ll be starting an alternative treatment soon that I’ll be telling you all about. I’ve heard and read amazing reports of people cured of their cancer with this treatment. So I’ll be committing to it 100%, though it will be a major inconvenience. But I don’t place my hope in that either. I’m just trying something to see if, by some chance, it will work for me. Or at least put off the day when I begin to have bone pain.

So what do I hope for, and what gives me hope? I’ll try to answer those two questions one at a time.

Here’s what I hope for. I hope to accomplish the things that are important to me. I’ve talked about my list of priorities in posts like A Sense Of Urgency. I’m hard at work on the next item on that list now; a big public performance that’s coming up November 20th. I had my first rehearsal for it last Saturday, and I have another one this Thursday night. Saturday’s rehearsal went very well, but it went six hours. Today is the first day since then that I’ve felt well rested and relatively normal. Future rehearsals shouldn’t take that long, but each one takes all the energy I have to give, and it takes me a while to refill the fuel tank.

It may seem like I’m complaining, but I wouldn’t give up this performance for anything. Neither would I give up another one that’s coming up this Sunday with the kids I’ve been helping to coach. Because I’m more interested in living than merely surviving. This weekend will be an endurance test, but I’m going through with every event on my schedule because each one is very important to me. Giving up the things I love would hurt more than any fatigue I have to power through. In my mind, giving up those things would constitute defeat. I’m not ready to wave the white flag on those things yet.

It’s not just checking things off of my list that I hope for. I also hope to spend as much time with the people I love as I possibly can. That’s why I’m gonna do whatever it takes to be at my best for all of it; Thursday night’s rehearsal, out late with friends Friday night, another rehearsal Saturday morning, dinner here with friends Saturday night, and the show with the kids on Sunday afternoon. None of it is out of a sense of obligation. All of these are labors of love. And that’s the key word. Love.

Love is what gives me hope. The love that I feel for the people in my life is dwarfed by the love that I receive from them and so many more. Here are a couple of recent examples.

Facebook’s recent practice of reminding users of anniversaries has not touched me very much until now. I was never a very active Facebook user before I went public with my cancer, so I haven’t been getting many of these anniversary reminders until this week. As you may know from my last post, I went public with the news of my cancer, and launched a GoFundMe campaign to help us get by a year ago last Saturday, October 22nd. So since Saturday, I’ve been getting reminders from Facebook every day of the goodness and generosity of people who stepped up to help us in our time of need. That gives me a lot of hope.

Close friends have expressed to me recently how hard my cancer is on them. One told me that listening to a song we’re playing together in my “bucket list set” made him cry. Another told me last week that she and her husband have never had a friend with a terminal illness before. It’s hard on both of them. I’m sure that’s true of everyone I love, and everyone who loves me. It makes my heart ache to put you through all of this. But the love we share makes this journey much easier, at least for me.

The sharp edges of my Christian beliefs have been softened over the course of the last year. One central tenet of Christianity that I have trouble accepting now is the one that says that we are all born with an evil, selfish nature. I was a poster boy for that belief for most of my life, but the last year has shown me that many people are basically generous, kind-hearted, and giving, no matter what their spiritual beliefs are. People care. Even when I did not care about them for so many years, they cared about me when the chips were down. Not all of them are Christians. Many of them are not. We are all born with the capacity to love, and with the capacity for self sacrifice, no matter what your church doctrine may say. That gives me hope.

Even so, my main source of hope is the God I worship. It’s in his son Jesus Christ, and the Holy Spirit that I feel stirring withing me every waking moment. I may question points of doctrine, but the reality of my spiritual experience is made more plain to me with each passing day.

I do not question the faith of my pastor friend who wanted to give me hope that a drug would keep me alive for years. I know that his ultimate hope is in the same God that I love. I know his attempt to give me hope was meant well. But I can’t place my hope in a pharmaceutical drug, or an alternative treatment, or in the slim possibility of a cure. All of those things will eventually fail me.

Here’s what never fails: God never fails. Love never fails. And God has never been more real to me. Neither has the reality of love. That’s what gives me hope. #waroncancer

Yes, my soul, find rest in God; my hope comes from him. Psalm 62:5

Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:12

Let us hold unswervingly to the hope we profess, for he who promised is faithful. Hebrews 10:23

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Going Public

One year ago today, October 22nd, 2015, I went public with the news of my cancer. I had been diagnosed since the previous August, but I had kept the news private until then, only sharing it with family and close friends. I had never been the guy that everyone felt sorry for before, and I didn’t want to be that guy. I was talking with one of my sisters about this early on, and expressed that sentiment to her. She pointed out to me that what I was feeling was pride. I realized that she was right.

To a Christian, pride is the root of all sin. According to our beliefs, every sin stems from pride; from the belief that we are self-sufficient, therefore we don’t need God or anyone else. My sister’s comment stung. The truth hurts. So I decided that I needed to be more public about my cancer.

Even so, I will admit that the main reason I put my cancer out on Facebook last October is that we had a financial need, and I didn’t want to rely on a few friends to support us. So we launched a GoFundMe campaign, and shared that on Facebook, along with my announcement. The GoFundMe campaign was a great success, and the outpouring of support, love, and encouragement sustained us for many months.

But there was an even more important part of going public that I started at the same time. A couple of friends suggested that I start a CaringBridge journal to keep people updated on my progress. Writing my journal became my new passion, and that journal turned into this blog.

Do I need to tell you what a blessing this blog has been to me? Maybe not, but I’ll try anyway. At first, with about a hundred faithful readers on CaringBridge, mostly comprised of family and friends, it was my main source of comfort and encouragement. I learned that I wasn’t alone. I learned that I was loved. Back then, I would post something almost every day, and would receive encouraging comments and “hearts,” CaringBridge’s version of Likes. It became my lifeline. But soon, it wasn’t enough.

That’s when I copied my journal posts to this blog, and launched God’s 2 By 4 last March. I began sharing my posts on my Facebook timeline, and in a prostate cancer support group in which I’m still active. That’s when the floodgates really began to open for me.

Until then, I was merely telling my own story in an effort to receive encouragement and support. Nothing wrong with that, but it seems that God had more in mind for this blog. The more I wrote, and the more I shared, the more it seemed like I was helping my brothers and their loved ones by showing them that they weren’t alone. This blog became less about encouraging me than it was about encouraging them. It remains that way today. That’s the purpose of this post, and every post. I hope that, by being open about every aspect of this disease and my treatment, that what I write will encourage other families who are going through this.

With nearly every post, I get feedback that says that purpose is being fulfilled. Men with this disease, and the women in their lives tell me so, almost every time I post. I’ve been in ministry for much of my adult life, mostly music ministry. Now, I’ve been blessed to have this ministry. It’s my calling, and it’s a calling that I will not ignore or forsake. As a good friend who I met as a result of writing this blog told me, this is my ministry now. I’m so glad that I found it. I never would have if I hadn’t taken the advice of a couple of friends to start journaling online about my cancer.

One of the greatest blessings of being as public about my cancer as I’ve been is that I’ve made new, dear friends. If I had remained private about it, I wouldn’t know any of these people. I wouldn’t receive any of the encouragement and love that I get from them. A few months ago, I charged one in particular – the same one who told me that this is my ministry now – with holding me accountable in what I write. More than once, she has gotten me back on track when I was veering off. That friend is Miki Friend Chambers. Thank you, Miki! I’m so happy to be your friend, and that you are my friend. This blog would not be what it is without you.

There are others that I consider friends now who I would not know at all if not for going public. I’m not going to name and tag all of you. You know who you are. I wouldn’t know any of you if you or I had remained private about our cancer, and I can’t imagine my life without you. You can testify as well as I can about the benefits of going public.

But it’s not just about blogging. I realize that most don’t have the passion for writing that I have. If we are Facebook friends, you know that I “check in” on Facebook when I’m at the oncologist’s office, or getting some procedure done related to my cancer. The comments I receive when I do that get me through the day. It’s an incredible thing. I’m so glad I got past my reticence about it, because it shows me that people really do care.

One couple that I’ve become very good friends with online during this process is Christopher and Lori Caminiti. If you’re part of one of the prostate cancer support groups on Facebook, you know them very well. They are the best example I know of the benefits of going public. No one is more transparent about their ordeal than they are, and no one is more positive and uplifting in their posts, despite the difficult road that they travel. I asked them to contribute something to this post to tell what going public has meant to them.

When Christopher was diagnosed with Stage 4 Prostate Cancer on May 2, 2016, amidst all of the fear and confusion, he made a decision to be completely transparent about his journey involving this disease.  It was an innate reaction for him to go public, in the hope that he could at least make a difference in even one family’s life.  Here he was at age 46, facing his own mortality. The doctors said that it had likely been growing for 7-10 years. We had been to various physicians with ALL of the symptoms of prostate cancer over the past 7, so how did they miss it? Even our urologist at the time didn’t test his PSA!  It was absurd that simply due to his age none of them put the pieces together.

Christopher became 100% dedicated to ensuring that everyone he knew was aware of the symptoms, and to start testing at a younger age (even with no family history). He knew in order to make an impact he would have to be as transparent as possible about every hurdle and triumph that he faced. 

In doing so, the strangest thing happened.  The more we shared each detail of our journey, the more love, support, and prayers we received. It’s what has carried us through thus far; well, that and the Man upstairs. Countless men have called or written to let Christopher know that because of him, they went in and had their exams and tests. He knows in his heart that being transparent was the right thing to do. It brings him peace knowing that by doing so, he accomplished what he set out to do. He’ll continue to spread awareness, and hopes to save everyone he can from having to endure the same fate.

-Lori Caminiti

That’s what I’m talking about. That’s what this post is about. It’s not about marking an anniversary. It’s about using this occasion to encourage my brothers to do the same. I know you may not want to talk about it. It seems like about half of the people in the groups I frequent are not the men with the disease, but their wives and daughters. But I am here to tell you that if you will be open about this on social media, you won’t believe the support you’ll get and the friends you’ll make. We are brothers here.

Your response to my last post was a great example. I hadn’t realized what a long stretch of bad news there had been for the last month until I finally posted some really good news. The reaction was nothing short of amazing. When hundreds of people show how happy they are about some good news in your life, you realize that this is what Facebook was invented for. Not cat videos or politics or pictures of food, but this. The ability to connect with people in ways that were never possible before. For all of its flaws, none of what I’m talking about would have happened without it. Use it. That’s all I’m saying.

I didn’t want to be the guy that everyone felt sorry for, so I kept my cancer private for a while. But once I went public, I learned I wasn’t that guy at all. I was the guy who was loved, supported, prayed for, and befriended. Going public is one of the best decisions I’ve ever made. #waroncancer #prayforchris