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