Hi Fellas, Happy Holidays. Many of you are aware of my journey, but to recap:
I am approximately 16 months out since surgery. I had 40 treatments of RT and just finished a year of ADT. Since my diagnosis, I have tried to remain positive, and stay healthy by remaining very active, going to counseling, and meditating. My PC level has been undetectable during the adt treatments, and I am hoping it remains that way now that I have discontinued treatment with the consultation and advice of my doctor. I really would have gone longer with the ADT, but the side effects of swollen hands, trigger finger, nerve pain, 15lb weight gain and diminished endurance really became unbearable. So it has been 3 months since my last (3-month) injection and I am trying hard to stay away from the negative predictions in my head, that says I will never have a natural erection again. Oh I forgot to mention I have been on penile rehabilitation with Dr. Mulhall's team at MSK. While I have had a few weeks without injecting at times, I have tried to remain consistent and remind myself to have faith, even though my libido is at a zero. Under these circumstances my partner has been great and often insists on being sexually intimate. Talk about "fake it until you make it',...LOL, I have faked so many orgasms at this point that I am on the border of resenting the times we are being sexually intimate. Not sure if anyone can relate, but this has been my experience thus far. So moving forward I really want to believe that I will regain some sexual normalcy with regards to erections, and increased endurance when I exercise. But I don't read many stories similar to my experiences on here. I don't mean to seem ungrateful, as I know many guys have had it much worse than me. However, I really miss being able to feel sexually turned on and have an orgasm. I know sex isn't everything in life and I have wonderful relationships and a meaningful career. However, I would be remiss not to state that sex was a big part of my life force energy, and at 53, I am not ready to say goodbye forever. Perhaps my attitude and outlook will change once I start to get some T-Cells back. Lastly, I want to thank everyone on here, who bravely continue to navigate their experiences with PC, and to those who have successfully regained their desired quality of life. So grateful for all of you.
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Dreamweaverman
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Hey Dreamweaverman, tried to send you a rely a while ago, and thought I did, but something must've gotten screwed up. I don't think you should worry about being ungrateful. We all struggle with whatever level we're on, wanting a better level, that's human nature, and what we learn by doing it may help the next person struggling with similar things. And sex IS a big deal and you've got every right to miss it, worry about missing it, worry about faking it, and wanting it back. Glad you're in touch with your positives, too. You sound completely human to me. Here's hoping things look up!
Wishing you the best, Dreamweaverman. Keep up your positive attitude. Seems like the strong support of those around you are serving you well.
Uncertainty is maybe the worst side effect of prostate cancer treatment. Will the next blood test show a spike in my PSA? Is that dull ache in my arm a pulled muscle or a bone metastasis? Is that leak a one-off or a sign of a more serious plumbing problem? Will the fatigue ever leave and will my penis ever get really hard again? The answers to these questions hang like swords over our head.
Maybe that sword analogy is too scary. I prefer to think of this prostate cancer journey as a “chair in the air.” Let me explain.
My cousin’s recent wedding took place next to a cornfield in the Shenandoah Valley of Virginia. The fields were golden. The blue sky was joyous. Friends and family showered the bride and groom with remembrances and speeches so intimate and sweet that I cried.
For just a second, the groom seemed anxious when friends lifted him high into the air and spun him round on his chair. His panic, however, seemed to change quickly. He became relaxed. He grinned. I assumed that he accepted the scary heights because he had confidence that his friends would take good care of him. He trusted.
Always in search of metaphors that relate to my cancer experience, I hoped that I could follow my cousin’s example. I hoped then, and I hope now that I can learn to trust, too. To trust in the future. To trust in my health-care team. To trust in my own strength.
What a strange contradiction is cancer and its treatments. They fog the mind, while they sharply focus attention on the now. They dull what we hear and see, and they sharpen what we hear and see. Cancer and its treatments fill us with doubt about the future, and take us to scary heights (or depths) that are empty of trust and optimism, but at the same time they free us to fly.
They free us to take chances. Cancer pushes us to take a chance by reaching out to a support group, a clinical trial, or a new chemotherapy regimen. Cancer makes us savor the moment and reminds us that it’s time to take time “to start livin’.”
After 44 radiation treatments and 18 months of Lupron injections for my Gleason Score 10 prostate cancer, my PSA continues to be undetectable. Side effects have been minimal, so I’m thankful. I put away my "extra surge protection" Depends into the closet. A five pound weight gain, fatigue, and stiff finger joints aren’t so awful. Despite the fatigue, I’ve managed to go to the gym almost every morning by 7:30, lift weights, stretch, walk three to five miles. I’ve been off Lupron for five months, and was finally able after almost two years to get an erection and masturbate.
A bit unsteady. High on a chair in the air. I’m doin’ my best. I’m enjoying the love of my partner, family and friends. I’m trusting that I will not fall.
Here’s hoping that you and I and all the guys on this message board regain that sweet quality of life that we hope for and our health stays steady in 2020.
Hey Ex54, Wow what an amazing story! Thank you so much for your reply. Your metaphors are beautiful and inspiring. It seems we have both had some similar experiences. Most of the time I am able to keep the anxious thoughts at bay, but sometimes this whole experience feels like a dream that I am going to wake up from. However I am grateful to have people like you willing to share their experince, strength and hope with me. If you are willing I would love to keep in touch with updates on this journey. Have a very Happy & Healthy New Year!
Happy New Year. Keep up the good work. I’ve been posting my thoughts on a cancer blog for a couple years. If you want, you can read more about my journey and my chair in the air feeling at donsreluctantcanceradventur....
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Facing a diagnosis of PC and dealing with a therapy
No erection after 7 months
