The Suggestion Box

I need to warn you. This is a hard post. You may not like it at all. You may be offended by it. But I have to say it. I hope you understand, and I hope I don’t lose too many of you with this post. But this is how I feel.

First of all, I need to say that I’m not directing this post at anyone in particular. If you think I’m talking about you, I’m not. Except for one or two specific examples I give, I’m speaking generally.

When you have cancer, you get a lot of suggestions from well-meaning people. They tell you what treatments you should consider. They tell you how you should eat. They send you articles to read, and links to websites for cancer clinics in exotic locations. They tell you to keep fighting, and to never give up.

When I was first diagnosed, I was like a sponge, absorbing all of this information. But now, after 21 months in treatment, I feel like I’ve seen them all. I can’t tell you how many people have sent me that “Truth About Cancer” video. Now, all of this advice has become rather tiresome. Especially since I’m not asking for any of it.

Even now, in the comments of almost every post, someone adds a comment about what they think I should or shouldn’t do, regardless of what the topic of the post is. Most the time, those comments are on Facebook. But some comment on the blog post itself. In the comments of my last post, someone suggested a treatment I should look into. This comment had nothing whatsoever to do with the content of my post. But I have this blog set up so I have to approve comments. I didn’t approve that one. I deleted it.

But it isn’t just comments on my posts. People message me with links they want me to look into, and videos they want me to watch. Most of the time, I’ve seen what they sent me before. Many times, in some cases. I even received a message this week from someone saying I should travel to India for treatment! As if!

It seems that people think I have a suggestion box on my desk, and they’re free to stuff that box full of all kinds of good ideas. But I’m here to say that I’m no longer open to suggestions. The suggestion box is closed.

I understand that those who do this are only trying to help. If we are friends, your suggestions come from a desire to keep me around as long as possible. I appreciate that. But I have to do this my own way.

Of course, there have been times when I’ve talked about a problem I had, and friends pointed me in the right direction. My friend Deanna, in particular, really saved me from some terrible emotional times by suggesting I try the supplement 5-HTP. It worked wonders for me when I really needed it. I think it was my friend Sandi who suggested taking Magnesium for my leg spasms. That worked for me too. I appreciate both of these helpful suggestions very much, and the friends who gave them.

The difference is, both of them were responding to a need I expressed, and tried to meet that need. It wasn’t just, “Oh, you have cancer? You should try this! I saw it on the internet!”

At the risk of offending so many who want me to try to find some way, any way to stay alive, the only people whose advice I’m willing to entertain regarding my cancer treatment at this point are my oncologist, my nurse, and my nutritionist. The medical professionals who treat me. And even they don’t have the final say. I do. They work for me.

I’m not interested in getting a second opinion. I’m not interested in traveling for treatment. I have confidence in my team, and it’s necessary for me to stay within the confines of what my insurance covers. I can’t pay for expensive new treatments that insurance doesn’t cover yet. I can’t pay for naturopathic treatment. I will not go into debt to try to stay alive a little longer. So when my oncologist runs out of options for me that I can go along with, and that my insurance covers, well, we won’t go there quite yet. But I think we’re pretty close to the end of that list now.

Please understand that my attitude about this is not a reflection on you. Especially if we have a real relationship, and aren’t just Facebook friends. Not to say I don’t have real friendships on Facebook. I most certainly do. I love you, but I’m done looking for a way out of this mess. Barring a miracle, there is only one way out.

And if the extent of our relationship is that we belong to the same support group on Facebook, or we’re Facebook friends but don’t really know each other, well, I want to say this as kindly as I can. Do you really think it’s your place to tell someone you barely know how they should make life or death decisions?

I think one of the problems here is that most people are fighters when it come to an illness like this, and I’m not. They’re willing to try anything and everything just to keep breathing as long as possible. If you’re that type of person, it’s hard for you to imagine why everyone wouldn’t feel the same way. But I don’t feel that way. There’s a limit to how hard I’m willing to fight.

Part of this is because I’m a man of faith. I don’t believe that survival is the greatest good, and death is the thing most to be avoided. I never have. I believe I have an eternal home waiting for me. In the light of eternity, does how much time we get here make all that much difference? Does anyone in Heaven think, “Boy, I sure wish I’d gotten a couple more years down there”? I doubt it. In all of the “near death experience” stories I’ve heard, I have yet to hear one where the person who crossed over wanted to go back. They’re always told, “It’s not your time. You have to go back.”

News flash: We all die. Nobody gets out of here alive. It’s just a matter of time for all of us.

It’s not that I’m stopping all treatment. Of course not. But I may not be open to any new ones. I’ll have to see what my oncologist has to offer. As far as I know, we’ll continue with Lupron and Xtandi, along with Xgeva to strengthen my bones. Hopefully that will at least slow the growth of my cancer, and keep me from having a catastrophic bone break or spinal issue.

I understand that you want to keep me around if you love me. And I have to say again that I’m astonished and humbled by how many of you there are. And I love you too. But urging me to fight for every minute and spend my remaining time searching for a cure that doesn’t exist is making it about you. It’s not about what I want, it’s about what you want. And worse, telling me to believe in miracles is questioning my faith in God. I have faith in God. So much that I’m willing to let him do whatever he wants with me.

I don’t know what my oncologist will say if and when my PSA rises next month. I don’t know what remaining treatments he’ll have available that will both be effective for a while and not compromise my quality of life, such as it is. I will listen to him, and my nurse too. I’ll talk it over with my wife. Together, we’ll decide what to do and what not to do.

What I need, and what every other cancer patient needs, is support. Encouragement. Love. Prayers. If we say we’re looking for information, please send it to us. If modern medicine has failed us, and we’re looking for an alternative, we’ll read every article you can throw at us. But as for me, I’ve reached a point in my journey where I feel like I have a pretty clear picture of what I’m supposed to do. And that’s what I will do.

Thank you for your love and concern for me. Let me say one more time that I know you’re only trying to help. I do need your supportive comments, your messages, texts and calls. I most definitely need your prayers and your love. But I don’t need any more suggestions about treatments I should pursue. The suggestion box is closed. #waroncancer #bearingwitness

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