I'm happy to report that the negative reaction I was expecting from my last post never happened. I only received one comment that I'd consider negative. The rest was overwhelmingly positive. In fact, after three days, The Suggestion Box is now my all-time most viewed post. Apparently many people could relate to what I wrote. So I'm glad I followed my heart and wrote that post. You may not always like what I write here, but you'll always get the unvarnished truth from me, at least as I see it. I did lose about thirty Facebook friends, though. I have over 2,600, so it's not that big of a loss, but it still bothers me.
I got called out by a friend for "friending" (thanks, Facebook, for turning the word friend into a verb!) so many people just because they liked or commented on one of my posts. I was accused of craving attention. It's true that I do that, but that's not the reason why. To be very honest, in most cases, I do it simply so this blog will show up on their timeline. Not everyone is a member of a support group for prostate cancer. I want as many eyeballs on this blog as I can possibly get. Is that wrong? Is it wrong to try to expand my readership? I hope not, because I'm going to keep doing it. Call it self promotion if you want. I feel like what I'm doing here is important, that it's helping people. I hear that every time I post. So yes, I will keep sending friend requests to those who like or comment on my posts. Feel free to ignore or delete those requests if you so choose. But I hope you'll decide to join us here.
I understand that many who truly care about me may have felt that I was giving up after reading that post. One of my closest friends said as much to me just last night. If he felt that way, I know others must have too. So I feel like I should explain myself better than I did in The Suggestion Box. I thought I was done with the Explaining Myself series, but I guess not.
When I said that I may not be open to adding any new treatments, here's what I meant. In terms of conventional treatments, the ones that insurance covers, there are only two options for me at this point, at least to my knowledge at the present time; Additional hormone treatments and chemo. If you know me, or have read this blog with any regularity, you know that I won't do chemo. As I said in a previous post, I don't believe it will give me that much more time, (around ten months seems to be the number most guys in my situation get from their doctors) I think it will just ruin the remaining time I have. Nobody is saying it will cure me, or even send me into remission.
Additional hormone treatment would make me even weaker and feel smaller than I do now. I'd be even less able to do the things that matter to me. And based on past experience, I'd only get a few months out of that too.
There may be treatments my oncologist can offer, or ones that he can send me somewhere to try, that would be covered, and that I know nothing about. That will be a topic of our consultation in June, if my PSA rises again, as both of us expect it will. I'm open to anything that is both covered by my insurance and won't seriously reduce my quality of life. I'm just doubtful that those treatments really exist. I hope I'm wrong.
I've read a bit about Proton Therapy, and it is covered by my insurance, but my oncologist's office doesn't offer it. I will ask about it the next time I see him, though. Maybe he can refer me to a place locally that does it. But that place would have to take my insurance, which not all providers do. And I don't know if I'm even a candidate for that, being metastatic.
The same is true for Immunotherapy. I don't know if my insurance covers that, or if anyone who offers it in my area takes my insurance. Or, again, if I'm a candidate for it. I also don't know what either of these therapies would do to my quality of life. These are all questions yet to be answered. If I get the right answers to either of these, I'm not opposed to trying them.
The problem with every non-conventional treatment out there, the ones that aren't covered by insurance, is money. They're all very expensive, from Naturopathic treatment to essential oils to my beloved cannabis oil suppositories. I'll be very blunt and vulnerable here. Our income is next to nothing. We rely on friends just to stay afloat, financially. Our credit, while very good, is pretty much maxed out. So it isn't just that I refuse to go into debt for treatment, I can't do that. We can't qualify for a loan in our present circumstances. So unless someone steps forward and offers to pay for one or all of these, I have to make do the best I can.
This is also why I can't travel for treatment. It costs money that we don't have. Others may be able to borrow money to do this, but we can't. Simple as that. We've already done the crowdfunding thing. I don't feel like I can go back to that well again.
When I said that I'm "done looking for a way out of this mess," that may have been a bit melodramatic. But I am very tired. After 21 months of hormone treatment, sometimes I do want to just chuck it all. Every guy out there who is on Lupron, Xtandi, or any other hormone treatment knows exactly what I'm saying. It beats you down. It reduces you to a bowl of jelly. In the past week, two of my prostate cancer brothers, both of whom I've gotten to know over the past months, have both decided go off of treatment. Both are sick of living from one PSA test to the next. They want to forget about cancer and just live their lives. I'm not there yet, but I'm getting close. Unless you've been on this stuff for as long as I have, you'll never know how that feels. I hope you never do.
To those who are close to me, or not so close, who wish I would fight harder, I say that it's hard to fight when you feel like you can't even raise your boxing gloves.
To those who say I should fight to stay around for my wife as long as possible, I can only say a couple of things without giving away personal information. First, my wife and I are in lock step when it comes to my treatment. She agrees with me on all of it. She doesn't want to lose me any earlier than she has to, of course, but she supports all of my choices and agrees with my opinions. In fact, on the subject of chemo, she's even more hard line against it than I am. And on the financial side, my attitudes about fighting are all about her.
Maybe I'm old fashioned, but I still believe that a big part of a husband's job is to provide for his wife and family. We don't have kids, so she's the only one I feel I'm supposed to provide for. Frankly, I haven't done a very good job of that for several years. Our retirement accounts are meager at best. Our main asset is our house, which could be sold at a substantial profit, but once our debts were paid, we couldn't afford anything decent in the overpriced housing market here in Denver, Colorado. And I don't want to sell and move. I want to protect this asset for her, so that when I die, she can sell this house, and combined with the insurance money, her 401k, and her Social Security income, she'll be able to live the rest of her life without having to get a job. Hopefully sales of my ice cream and book will help her too. It's all about her, even though it may not look like that to you.
Jesus said, Greater love has no one than this: to lay down one’s life for one’s friends. Or one's wife. My own paraphrase of John 15:13. But there's an even better scripture reference for this exact situation; Ephesians 5:25. Husbands, love your wives, just as Christ loved the church and gave himself up for her.
In my mind and heart, I show my love for my wife not by depleting our resources to try to stay alive, but to provide for her the best way I can. If push comes to shove, I will bow out early in order to do just that. Unless I feel like our financial needs will be met, and we can live a comfortable, fun retired life together, free of the constant burden of fighting cancer, I don't see the point of putting both of us through hell for months or years with one treatment after another, hoping against hope that each new one will be The One. And meanwhile, drain all of our assets and leave her in worse shape when I finally do die. She will have to mourn my loss sooner or later. I want to leave her in the best financial condition I possibly can when that happens. It's the least I can do for her. And I'm willing to lay down my life for her in order to do it. I love her that much.
Of course, I know that she is not the only one who will mourn my loss, and consider it premature, no matter how hard I fight. I know that you want to push that date off as far in the future as possible too. Someone commented just this morning on my last post that I should be thankful that so many people care enough about me to want to give me advice about how to treat my cancer. Many don't have that. I agree 100%. I am thankful for all of you. I may well ask you for information or advice if I feel you're the right person to ask. I did that with a dear friend just this morning. It's the unsolicited kind that I object to. The friend I talked to this morning has wanted to share information with me for some time, but waited until I asked. I appreciated that very much, and I finally did ask.
I hope I've explained myself well enough in this post. Maybe you feel like I didn't need to do that, but I did. The last thing I want is to be misunderstood because I didn't explain things well enough the first time. I actually have another post almost completed, that I intended to publish today, but I felt I needed to write this one first. My next post will be much more cheerful. The title is Life In Our Days. I hope you found this post informational, but I hope you find that one inspirational. I do. #waroncancer #bearingwitness