Went to the oncologist a few days ago. This was my two month checkup on my PSA. Recall that I had a big, surprisingly good drop in my PSA the time before.
This time my PSA was about 18.5. Still well below what it was months before, but, importantly, more than it was 2 months ago. So I’m still in the “Lupron has failed” category. That’s called castration resistant – horrible name.
Since Lupron (and Casodex) are used in prostrate cancer to stop or inhibit the use of testosterone, they’re the chemical equivalent of castration. Hence, once they stop working, one becomes castration resistant.
The bottom line is being in this category I have, on average, less than two years to live. My PSA levels are already high relative to when most men get classified into this category, so that’s not good. But I’m relatively young and in relatively good health, which works in my favor. Who knows which side my death will fall on.
I do know this transition to castration resistance has had a huge impact on my life. I find it hard to go to sleep. It’s as if I allow myself to go to sleep, I’ll lose a day, and then I’ll be one day closer to death. So now my schedule is totally hosed. I collapse around 5-7 in the morning and sleep until the afternoon, often late afternoon.
I am finding living on this schedule is very difficult indeed. I’ve tried anti-anxiety drugs to get control of this, but that’s been a bust. I’m going to work with my doctor and wife to try to find a way out of this hell.
Dying isn’t as easy as I thought it would be.
Yet Another Prostate Cancer Blog 
A long and winding road. Hoping it smooths out for you so that you can make the most of what you get. 💚
Thank you for the kind thoughts.
Such an emotional roller coaster. I’m glad the news was at least marginally good. xxoo
Yea, at this point I’ll take what I can get.
It’s a difficult road you have to travel. Hang in there and enjoy the good days.
Thanks. I try to enjoy the good times as much as I can.
I know you do. Hang in there.
What a powerful and moving post. Just remember that each of us–whether we’re battling cancer or not–is one day closer to the end every night we go to bed. And none of us knows how many nights we have left in the bank, so that just leaves the present. My wish for you is that you can return to a normal sleep pattern and enjoy every moment in the here and now. All the best to you.
What you say is true. It’s just the though that the next holiday season may be my last. For some reason that has enormous power over me.
You are one tough mama jamma and I love you to the moon and back!
I hope the benefits of modern pharmacology can help you get some proper rest. Being exhausted is a bitch!
You got that right! Xanax is a help. Ambien appears to do nothing. Who would have thought.
If it were me (and it will be, some day), I would focus on the second-line therapies.
You are a technical guy, study them up.
My nurse practitioner recently gave me a print-out of the latest NCCN guidelines (nccn.org, leading cancer centers pooling their knowledge), with a comprehensive list of second-line stuff. I can retrieve it, if you want – not sure if you can reach me?
Thanks for such a considerate offer. I think my next lines of treatment will be zytiga and provenge. I’d be interested in any info you have. Email me at photockie@tx.rr.com.
Keeping you in my thoughts. I know it sounds cliché, but maybe you can find a balance so that instead of focusing on the dying, you can focus more on living. God that sounds high & mighty, and I don’t mean it to. Like you said…you are relatively young and healthy…and for now, that is what is important. Hope you find your balance. *hugs*
I do find balance a lot of the time. I wanted to capture some of the down times in this post. I know others feel this way and I want them to know they’re not alone.
I know. I said my comment had come out badly. 🙂
It didn’t come out badly at all. I appreciate the support.
I’m so sorry to read this.
I’m reading from my bed in palliative care ward of a hospital here in Jerusalem. Dying isn’t easy or pleasant. Or fast enough.
It’s the fast enough part that worries me. Left with nothing to do but lie back and think.
Excuse my manners. I’m too caught up in myself. I’m sorry to hear you’re at the palliative care stage. I hope they’re giving you good drugs. You’re in my prayers.
I will offer no advice. I will only say that my thoughts and prayers are with you. I will spend some time looking for comforting scriptures if you would find solace in them. Sending hugs!
Thank you. I really appreciate it!
Hi YAPCaB, sorry to hear about the down times. You are in my thoughts often. Sending mountains of positive vibes for a better road ahead. I am dealing with my issues by moving to the country. We bought a small acreage and are planning our home, trying to avoid the time pressures and “what if” scenarios if things go wrong before it is done. Probably a crazy project but it is taking my mind off the negative health stuff. Really looking forward to a peaceful existence in our new home. Take care. Cheers, Phil
Lol sounds as if we’re doing the same. Bought a house near my wife’s family and are now in the process of renovating it. I try to avoid thinking about the bad scenarios, try is the operative word. I don’t think we can ever really get away from it, just minimize.
I think of you often as well. You are one helluva man. Trying and doing the best you can to deal with a rotten situation.
I was avoiding my own blog, I am sorry that I did not see this post when it was first written. You have been in my thoughts often, but I should have taken the time to visit over here and see how you are doing. I am so sorry to read this latest news, I cannot imagine how many ways this must affect both you and your wife. It must seem impossible to get out of cycles of thinking. I wish I had more to offer than words, I will keep you in my thoughts and prayers.
It’s funny, in a way this is good now the uncertainty of when the lupron will fail is finally past. Part of me is glad I’m done having to worry about my PSA.
I hope you get reinvigorated with your own blog. Would love to know how you’re doing.
Just saw your post. So sorry to hear you feel the need to mostly abandon the blog. Maybe you could start another anonymous blog…
I am strongly thinking about it….. And DEFINITELY keeping my big mouth shut next time 😉
If I do, I will let you know
Thank you so much. I really value your support and feel my support of you was helpful for both of us. Regardless, of which path you choose, you always have my best wishes.
Thank you so much, I feel the same way. Regardless of whether or not I blog I will still be following you here.
You are living through the nightmare I dread. I wish you courage and some good sleep. I offer you one thought: it’s not about where you are travelling or when you will get there but how you travel your road.
Thank you for your kind thoughts. You are right, the focus needs to be on how I travel. Thinking about it that way is comforting.
I’m here for you whenever you feel the need.
Thinking of you and hoping Spring is bringing some positive energy your way! Please know you are not alone.
I’m a little late getting back to you. One of my least desirable characteristics. Thank you for your support. I haven’t seen you on the blogs lately. How are you doing?