After meeting with two oncologists in the last two days, we've learned a lot, and come to some conclusions. You may not like our conclusions, but this is where we are.
Yesterday, I met with an oncologist - not my usual one, but one at the local university hospital - to inquire about clinical trials I might be a candidate for. There was a wealth of information, but the short answer is that there aren't any trials at that facility that are right for me at this time. That could change in six months, but right now, all the trials they have for prostate cancer either exclude prior use of Xtandi, which I just finished taking a month ago, or they involve chemo, which I won't do.
One interesting thing this oncologist said was that she thought I've probably had cancer for about ten years. I just wasn't diagnosed until 2015. My PSA rose incrementally, but steadily, every year since 2001, when it was 4.0 and I was 46. They didn't test men in their 40's for prostate cancer in those days. Some doctors still don't. It wasn't until that two year period between 2013 and 2015 that the new, more aggressive version made its appearance, my PSA spiked, and my cancer became unstoppable. If I'd been diagnosed prior to 2013, and had surgery then, I'd probably be fine now, with expectation of a normal life span. But I had no insurance and no doctor then. Woulda, coulda, shoulda.
She reminded me of all the factors I've had stacked against me; late diagnosis of an already advanced and very aggressive cancer, my cancer becoming resistant to hormone treatment so early, metastasis advancing so rapidly, and so on. Considering all of these factors, I've done incredibly well. It's been two years since my diagnosis, and I still have no symptoms. But I will, and soon. I have no illusions about that.
Her recommendations were that I start taking Zytiga, which is another hormone treatment like Lupron and Xtandi, and possibly combine it with Radium 223 treatment, also known as Zofigo. Sounds like a cheesy magic act. "Ladies and gentlemen, the Amazing Zofigo!" That's the one that gives you radioactive urine. Lovely. But she thinks I should do chemo too.
This morning, I met my oncologist to discuss all of this. He really, really wants me to do chemo. Taxotere. Nasty stuff. But unlike yesterday's oncologist, who said she thought I'd get about four months from chemo, my oncologist thinks I'd get more time than that. What quality of time I'd get, he wouldn't say. He also admitted that my cancer seems especially tough and resilient. Nothing much seems to phase it for very long. So it is possible, even likely, that I'd go through that and only get good results for a short time. But he still thinks it's the best treatment for me.
He's less enthusiastic about Zytiga. He's pessimistic about how long that would be effective for me. But it's the only treatment he has available that wouldn't have side effects that would keep me from doing what I love.
At the same time, he's looking into the Radium 223 treatment for me as well. It's a radioactive isotope that they give you in an IV. It's supposed to specifically attack cancer in bones. Other than the fact that it gives you radioactive pee so you have to use a different toilet than everyone else in the world, the main problem with that treatment is it doesn't lower PSA. So there's no way to tell if it's working. I'm still trying to keep an open mind about that one, but I don't like the sound of it.
I know you have to take Zytiga on an empty stomach, and that was a concern for me because of my issues with losing weight. I need to try to avoid having an empty stomach. But my beloved nurse Melanie assured me that if I take it first thing in the morning, and don't eat breakfast for an hour after, it should be no problem. She thinks I should do this. That's good enough for me.
Toward the end of our conversation today, I asked my doctor a couple of questions. First, I wanted a number from him. Not a life expectancy number, but an onset of symptoms number. How much longer can I expect to feel good? He said six months after treatment stops working, he'd expect me to start showing symptoms. Treatment has already stopped working. He doesn't expect what we're starting now to add much time to that number.
Lupron alone worked for ten months. Lupron plus Xtandi worked for six. There's always a law of diminishing returns with these things, so let's say Lupron plus Zytiga works for four months. That would give me four additional months, so ten months before symptoms start to set in. But as fast-moving as this disease is, it could be less time than that.
What would the first symptoms be? Most likely, uncontrollable weight loss, hair loss, and weakness. Gaunt Cancer Guy will be in the house. Then pain.
I'm not the first guy to resist chemo when I have no symptoms. Many react that way. Why would I make myself feel bad when I feel good? Especially when feeling bad won't cure me or significantly extend my life? Often, guys who have this attitude change their minds and start with chemo once symptoms start. But I don't believe I'll do that. I told my oncologist that when symptoms start in earnest, I will stop treating my cancer and go with pain management alone.
Many guys, when they decide to stop treating their cancer, do so because they want to put cancer out of their minds and just live life as long as they can. I congratulate my brothers who are able to do this, but that's not my calling. My calling is to bear witness to what it's like to die of this disease. It's to bear witness to God's goodness to me during this time. To bear witness to what love can do.
I also asked him if he will still be my oncologist when I decide to stop treatment. He said yes, but his role will be secondary at that point. I'll be in Hospice care.
While this news was in the works, God was working behind the scenes. For weeks, he nudged a man I've never met to bless us in the best way possible, at the exact right time.
I've talked in this blog many times about my favorite musician, Neal Morse. His music has been an indescribable blessing to me since my diagnosis. Neal and his band hold an annual festival called Morsefest at his church in the Nashville, Tennessee area. It's a whole weekend of concerts and events, all of it Neal Morse music. It's my ultimate bucket list item.
Last week, a young woman asked a group of Neal Morse fans if she should go to Morsefest this year or save her money. I commented that she should go if she can, and that I'd give anything to be able to go. I said I felt like this year is probably my last chance. Was that an offhand comment or a cry for help? I'll never tell. But I made that comment days before I got the news that I should expect symptoms in a matter of months. It really does seem like this year is my last chance.
So God impressed on a friend that my wife and I should be at Morsefest this year. We've never met personally, only in the Neal Morse Forum on Facebook. He reads this blog. He messaged me recently about this, and he and the moderators of that forum set up a GoFundMe campaign to raise money for us to go. To pay for our tickets, airfare, car and hotel. Today, the first day of the campaign, we exceeded our goal. We are going to Morsefest.
So instead of crying about the news we got from the doctor today, we've been crying tears of joy over the kindness of friends and the goodness of God. God orchestrated this so we'd get this amazing news the same day we got such bad news. It was Providence. And if God wants us there so much, it's because he's going to do something amazing. Mark my words.
I may not have that many more days in my life, but I have life in my days. I still have things I feel called to do, and things I'm passionate about. I'll do all of them for as long as I can, and keep telling my story for as long as God grants me breath. He's keeping me upright for a reason. He won't let me fall until he's ready to catch me. #waroncancer #bearingwitness