Eight days ago i celebrated 17 years of marriage to the beast.. three days later on the ninth, I celebrated 16 years of marriage to my sweetheart Mandy.
I promised Mandy 30 years together on our wedding day Why wouldn't I? A year previous, my PSA was over 3200. My lungs look like Swiss cheese and I had been peeing blood for weeks! The scans showed bone, lung and lymph node metastasis, and a really crappy prognosis. Flash forward a year to my wedding day and my scans and my PSA were both undetectable
The anniversary of my diagnosis used to be a big deal. This year I completely forgot about it. Maybe I'm just getting old and forgetting stuff. More likely, I just don't think about cancer anymore. I still wake up every morning and take my Zytiga and my prednisone. I still go to my tri annual oncology appointment to receive my Eligguard and I still wait for those PSA test results to pop up in my electronic chart but other than that I just don't think about it much at all.
. I see all of you new guys show up to forums, freaked out, scared, searching for any news that will tell you you were going to live a long life or at the very least let you know how much longer you have. I want you all to know right now, it very well can be a long, long time. When I was diagnosed with this stuff, I was only 42 years old, and my prognosis was a year or less. Dude, I was freaked out! I remember I used to try to make deals with God! Now I canI vaguely remember the side effects of treatment. I continued to work as a pipefitter. It kept my mind off things I would meditate during the sleepless nights. I would seek signs to my longevity everywhere. I think I went a little bit crazy to be honest. I probably would have went completely insane had it not been for the men and the caregivers on forums such as this who were there to help me through. They were God sends.
I used to get angry when people would say I was lucky. I got the good cancer. I would lose it on them. After 17 years of playing this game, I would not say that I got the good cancer but I watched my dad pass away horribly from Cancer of the esophagus and my brother is fighting stage four colon cancer. I have watched him get slammed with bag after bag of chemo and watched as he went through 30 something rounds of radiation. I have watched him go through his surgery where they removed cancer from his liver . In four weeks, I will watch him have another surgery to remove the tumors in his colon.
I know that prostate cancer is a horrible disease, especially when it is aggressive, and nothing seems to work, and my heart goes out to men and their loved ones who must go through this terrible tribulation.
I have been blessed. It really is the only way I can explain it. My life is amazing and wonderful, and because of the men that I met on these patient forums, I have lived my life to the fullest every day. Somebody told me once that it was an inevitable, I was going to die. of something! It might be a die of prostate cancer. It may be that I walk out the front door and keel over from a heart attack today. Maybe it's in a car crash maybe I fall into the river and drown! I don't know! I don't know what I'm going to die of or when and guess what neither do any of you
The biggest lessons I have learned in the 17 years of fighting stage four hormone resistant prostate cancer is that I have today and that is all that I am promised. There are insects whose entire lifespan egg pupa larva adult is 24 hours. That's it one day! It's their entire life! Y'all have today and maybe, God willing, you have tomorrow. Please please please find the joy in today. Be kind to others for you know full well how precious life is. It may be that you are closer to mortality than others are, but you can be a light through it.
OK I'm going to get off my soapbox now! But I want to leave all of you with this. I could've went down the rabbit hole I could've drowned in sorrow and despair the others reach out to me. They showed me a better way. They taught me to cling to victories, hold onto hope, and live for the moment. I'm so glad they did. I'm so glad I took their advice. 17 years would be a long time to be afraid.! Love Y'all. ☮️
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Todd1963
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Todd. Just the thing I needed to read today. Thanks. Ive been pretty positive so far in my very short journey so far. But yesterday, the pressure cooker blew and it all came out, couldn’t stop painfully sobbing for a couple hrs. Back on the horse today and onward we march. Stories like these are very helpful for me.
Great post, Todd - a lot of content that is a great primer for newbies and a great reminder for vets. Coming up on 7 years after a grim prognosis, I live day to day just like you. Just that. Keep on keeping on!
Oahu - left for CA in the mid 70s and been in CA longer than I was in HNL, but not calling myself a Californian Not Hawaiian (or a commie) either, tho sometimes pts say that I look it😂
We was just on Oahu visiting the grand daughters l. Our daughter too. We love the Big Island. It is our favorite but they are all beautiful in their own way!
Awww, that's wonderful. I have 2 mo'opuna (Grandkids) in Louisiana and the other in NYC. I finally got to the Big Island last Dec when I went home, that was a blast.
I grew up in Kaneohe, then ohana moved to Nu'uanu.
Thank you. We spend the entire summer aboard our boat. 2016 Searay 21 SPX. We brought her home after she called to us at the Seattle boat show. If we were wealthy monetarily we would upgrade to a Sundowner 26' and never leave the water in the summer. I would rather be rich in spirit and love than to have a fat wallet.
I love Sea Ray products, bought my first one in '88 now own a 2018 190 , darn things are bullet proof. Live in Lake Havasu so warm boating from May to October.
I love offshoring, now I spend a lot of time at resorts , on the water, here in California to get close. I’m inland but we have numerous large reservoirs that hold mountain runoff water for the farmers and I’ve had boats for the last 30 years. I had to sell my 18’ aluminum Fisher Fish and Ski sport boat when I got sick. ADT plus cancer caused bone joint damage has taken most of my mobility to the point that I could only board a boat in an electric scooter these days. Staying by the water is about the best I can manage now yayahahahaya yayahahahaya. I’m not complaining tho, waves splashing on your door , watching whales feed and excellent 2 star room service helps a lot yayahahahaya.
Well said, 7 years June 6th for me, wife and I celebrate every year in Costa Rica, we are here now. Like you I thought my days were numbered and blew through a ton of cash, but alas I am still here. Still think about cancer from time to time but don't dwell on it and have surrounded my self with truly beautiful people. Keep on keeping on.
Would that also be a good place for snorkelling? We’re a bit past our diving days but love to snorkel. If so we’d put it on our bucket list along with Costa Rica which we’ve long wanted to visit. Bit far from OZ but with family in Canada they would be good add-ons. Thanks for any info. Cheers 😊
In 2017, after my husband's diagnosis, I searched the internet (as we all do) looking up the terminology, researching treatments, and joining forums. I joined a forum that you were on (not this one) and started reading about your journey. In the Fall of 2017, Zytiga was approved for men more recently diagnosed. I encouraged my husband to start that treatment and then encouraged him to do Provenge. He is now 63, still working full time, & PSA is undetectable. Life has changed, but he's still doing what he loves - which is music. Thank you for your optimism and being such a inspiration to the community.
I play music as well so I am very excited that your husband is able to continue doing that. We moved to our forever home a couple years ago and it is the first time I've ever been able to have a room that is simply the music room, and I have a guitars and some ukuleles and a mandolin and keyboards keyboards amplifiers everything just hanging on the walls. it's kind of cool
Congrats on the music room! We just downsized so his office is also his music room. We don't have ukuleles or mandolins but we do have guitars, basses, and several keyboards. He continued to play in rock cover bands (he played lead guitar and I ran sound) through chemo and up until Covid. Not in a band now but he picked up keys since then. And, like guitars, it seems you can't have just one. LOL
My feelings exactly. When first diagnosed in 2021 I went into a deep depression for two months. I was trying to figure out the easiest way to end my life without making a mess. Then like you I decided to live everyday as if it were my last. Best decision I ever made. Like you I don't think about cancer I think about life and how good I feel. Maybe I'm fortunate because up until now I have few sides affects from my treatments. I feel strong and healthy a view everyday as a blessing. I will be turn 68 in July, not old but not a young man anymore I look forward to whatever more days God gives me and will continue to live my best life...Cheers to you and wishing you many more years of this great life...
What a beautiful message. I believe that like each and everyone of us, you will live as long as is God’s will. It is abundantly evident that He still has work for you to do on this earth. It takes courage, humility and a generous heart to share your life like an open book in order help others. Blessings to you and your strong and faithful wife.
Brilliant, Todd, your post has given me hope and inspiration. I am due for my first round of chemo for castration-resistant aggressive PC. I do feel a bit easier now after reading your post. - one day at a time!
Hi saw your comments and note on upcoming chemo. Here is my experience with chemo that may be of help/interest to you..................... Side effect from my 1st chemo session was pure hell. For 2 days after the session, things seemed bearable, then from 3rd day onwards the side effects were unbearable. Even my teeth seemed to ache. That lasted for another 2 agonising days.
After the 1st session, my wife did some research and came across article supporting the idea of undergoing a Fasting Mimicking Diet (FMD) just prior and after each chemo session. You definitely need to check this topic out on the internet. The theory is that by fasting (actually it seemed more like starving yourself), this would cause the good cells in your body to going into a hibernation type mode, whilst the cancer cells in the body would continue to stay in high-active mode (since this mode helps the cancer spread aggressively within your body). Then when you start the chemo infusion, the drug works primarily to destroy the high-active cells (i.e. the cancerous cells) whilst doing only minimal damage to the hibernating cells. That’s the danger of chemo; it can cause damage to good as well as bad cells.
Anyway, I drastically limited my food intake 2 days before my 2nd chemo session and continued it for the day after the session. Just like before, the 2 days after the chemo session, everything seemed perfectly normal. On the 3rd day, I felt a bit bad but nowhere in comparison to the effects from the 1st chemo session. Essentially, the chemo side effect where much milder and my recovery period was much faster. Also discover that taking Anti-histamine tablet the day before, the day on and the day after the chemo session as helped to sail through the session. Following the routine, each chemo session become noticeably easier and easier.
The FMD involved a fasting diet (target is about 700 calories/day) taken during the week of chemo (3 days prior + day of chemo + day after chemo). I hope you have the same success if you decide to try this routine. Please let me know the outcome of your session.
The chemo did work to reduce my PSA but don't get too hung up on only the PSA score. Keep monitoring overall health readings/scores.
Great idea about the the fasting mimicking diet. Chemo is not on the map for me as of now, but the science behind this diet is compelling. For those who are interested, details of the FMD are found in a book by Valter Longo called The Longevity Diet. Great read.
This is a great story of why Docs should not make predictions about a man's mortality based on a PCa diagnosis. At the most, perhaps give a man a 1, 5 and 10 yr(or longer, if available) probabilty of escaping PCa-specific death and/or death from any cause.
Thank you for your brilliant post. Your advice and philosophy on life are spot on.
While everyone’s PC journey is different it is posts like yours that give perspective and hope that all isn’t necessarily doom and gloom. It’s what people need to read. It was, in fact, posts similar to yours that gave us some peace and hope when my husband was first diagnosed. That was 5+ years ago (nowhere near your 17 years - how fabulous is that- but who knows).
Like you we try to live each day to the fullest. We’re active socially and physically and he’s president of an equestrian club where he, at 80, still rides when he’s not busy fixing things, plowing and fertilising pastures etc.
And we travel whenever we can. We’re currently on a two month holiday from OZ enjoying driving a motor home through Eastern Europe and Germany. Life is good.
We hope others on this forum take inspiration from your story and rest a little easier. Stay well and may you long continue on your fabulous journey. Gail & Jurgen
Todd - I know I have a strong mindset towards pc but your words have inspired me further. Mindset is so critical to our path forward, a path that allows us to enjoy life, family and friends, even when faced with this "beast".
Thank you for sharing your story, I know your words will inspire others as well to make the most of each day they have.
Lookin' good!! Congrats on your anniversary with Mandy! We just celebrated 41 years in May and we are still best friends! We too make sure to find joy in every day! Thanks for your encouraging post! I'm so happy you are doing well. Now go have FUN on that awesome boat!!! ❤️
Thank you for sharing, very encouraging for all who are fighting the good fight. I’m on my 7th year since diagnosis and feel blessed for every day that I have. 🙏
Great story I'm all on board with your attitude. I'm also 17 years out and live every day to the fullest. We just sold our sea ray 240 sundeck and now are tritoon boaters. Enjoy your boat and enjoy and embrace your family and friends. Thanks again for a great story!!!!
Thank you for your honest input. You are on quite the journey. I'm sorry you had to watch your dad pass away and that your brother is going through colon cancer. Live the best life possible and I hope you have many many more years ahead of you. Happy Anniversary to you and Mandy.
Thank you for that uplifting post! I am entering my 16th year since diagnosis. I started my treatment journey with radiation, that has had more serious long term side-effects than I had expected. Two years later, I had salvage surgery that showed clear margins and lymph nodes. Yet, my PSA began to rise again within months. For several years, scans did not detect cancer. I began Lupron when my PSA shot to 17. There were suddenly tumors visible next to my bladder. Apalutamide dropped PSA for 2 years and tumors shrunk to nothing. PSA started to rise again and tumors were growing as well. It was time for docetaxal and 9 months of those side effects. I just had my first Lu-177 treatment in London, as it was not available here. PSA dropped to 2 within 2 weeks. Looking at second treatment soon, hopefully nearby.
My message really is this. During all these years, I retired from a job I loved, lived on a sailboat, saw beautiful places, met an amazing woman, still together, and enjoy so many friends and family to the max! I just celebrated my 70th birthday and my journey continues!
Life doesn’t end because of cancer until, and maybe, it does. We live our best lives in spite of it. So! Love, live large, enjoy life for as many days, months, years, you are given. We really don’t know the future, just do our very best to live every day!
it would be a blessing to so many newly diagnosed men and their families for doctors to share your story with them. You give us so much hope and your attitude is wonderful! Praying for you to have many more years and lifting your brother up in prayer 🙏
I'm 20 years out. Tons of drugs and cycles but I have done it all intermittently so I could have recovery and fun times in between. Was advised against intermittent but told the docs it's my life. Kept my prostate, married a beautiful woman just before initial diagnosis, maintained strength between cycles and plenty of romance. I'm 72 now. Cancer is slowing advancing but I would make the same decision again. Great post.
You post is Very encouraging. I'm curious how 17 years on Eligard, Zytiga and prednisone hasn't destroyed your bones. I've only been 4 years on that same cocktail of treatments, and my bones are thinning, painful, and I have extreme muscle pain and fatigue. Other than these side effects though, I feel pretty great and pretty optimistic. Thanks for sharing your "anniversary" with us
Great post, the kind of thing we all love to read. I'm only a couple years in but your mention of the Zytiga, prednisone, Eligard routine is personally familiar. What I didn't see was: no sugar, broccoli, green tea, no red meat, work out routines, etc. and am wondering any of that is in your success story. You look great so whatever you do must be working. All the best to you and Mandy.
This is a great post - will help a lot of PCa patients who are getting through their initial diagnosis and treatments -- there are many people living a long time - as you point out the fear most have during the first few years start to fade as more and more time goes on without the recurrences... Hopefully there are many who are off all meds and still in remission.
good morning boys and girls. I just want to thank all you guys for the replies. I really appreciate it. And I guess I have grown somewhat complacent in my journey, but I even view complacency as something positive. I have lived long enough to grow complacent. I have lived long enough to reach the age where I can scream at people to get off my lawn, and nobody cares. Someday I hope I will slide through the gates of heaven at 100 miles an hour. all beat to rat crap, broken, but beaming with pride and exclaim. Wow that was a hell of a ride.
Todd, thank you so much for sharing your story. I was diagnosed 4 years ago with a PSA of 308. Bone and lymph node involvement. My PSA has been a steady 0.000 for the past 3 years. I am grateful for every morning I wake up but I will admit I have my dark days. I aspire to match your years of living with this beast. All the best!
Todd - Congratulations - I agree with your positive attitude 100%. I too am a 20 year survivor of the beast and stage 4 prostate cancer. If you don't treasure the day you wake up you won't treasure anything. Faith and love of your partner will save the day no matter when your time comes. Keep on battling brother.
Thanks for sharing the story Todd! I’m 50 diagnosis at 45years old. I’m 9 months into ADT and have super low PSA last tested 45 days ago. Still hormone sensitive and hopefully for a long while longer. I wish you the very best to continue your undetectable PSA. Stay healthy and strong. 😁💪🏼
Your journey serves as a reminder that every day is a gift, and with the right mindset, we can overcome any obstacle that comes our way.
A testament to the indomitable spirit of the human heart and the power of hope in the face of adversity.
Your positivity and fighting spirit despite the challenging treatments and setbacks are inspiring, such a beacon of hope, demonstrating the power of courage, resilience, and a positive mindset. Wishing you the best of health and happiness.
Great post Todd, an inspiration to us all. Glad to have a new member of the QOL brigade.
I read it to my girl Coco at breakfast this morning and she commented that Love has a lot to do with your success. She is a bit biased. I was diagnosed 1 year into our relationship and I do believe that my great response to ADT has been enhanced by Love.
Thanks, Todd1963 for reminding us that it can be done. I hope your success has the " Roger Bannister Effect" on all of us that needed to hear that. 👍👍👍
Todd 1963, I agree with everything you said. Trying to forget though, is sometimes hard due to the variability of the side effects that one may feel from the treatment. But, I have learned that my relationships are what truly matter.
I'm always uplifted by your posts. As I'm sure is true for many here (and around the world most likely) you and your story have been a powerful and hopeful light and helped me and my husband beyond measure on this journey. I'm so grateful.
Happy anniversary to you and your dear Mandy.
Thanks for continuing to share your life with us. It's a priceless gift you give us all. ❤️
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Not Hawaiian (or a commie) either, tho sometimes pts say that I look it😂
My Facebook post on the 4th anniversary of my diagnosis 
Another Vacation Question
Ruby Wedding Anniversary Today !
Three-Year Anniversary
HAPPY ANNIVERSARY TO CHUCK MAACK
