As most of you know HDguy61 was my guy. He passed away peacefully in December after being transfusion dependent for 6 months. Dealing with a chronic illness of my own (stage 4 cirrhosis), I relate very much to the need to find joy even in the midst of uncertainty. We were very good at that together.
We spent a lot of time on this board searching for answers and options and enjoyed all the QOL posts. So, this is my stab at one. Enjoy me on this journey if you like. Stay tuned… It’s going to be a nice little ride.
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Zengal79
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This made me smile so big! I’d never seen Easy Rider much to the dismay of my guy. He corrected that and I’m officially schooled.
Fun fact about my guy. He bought a brand new 1975 Harley Davidson motorcycle at the age of 15 with his paper route money. He saved up for that motorcycle from 8 years old. We found the receipts and pictures of his first ride a few weeks before he left this rock. Nice memory.
I'm so sorry to hear you lost him. But I'm glad you are getting what you can from life while you have it. Appreciating what we have in the present moment is important for everyone.
My guy traveled to Tennessee to ride the Tail of the Dragon. On his way down, he stopped to meet me in Brown County, Indiana for a ride through the beautiful Brown County State Park. My first time on the motorcycle.
That all for 2020. My health declined quite a lot during this time so I had to skip his Arizona ride. He had a grand time and met up with a fellow warrior out there to make some memories. That’s all for today. Tomorrow I’ll start 2021 in HAWAII!!
Best to you on your journey. I found out 5+ years ago I had prostate cancer. 4+ it moved to advanced with metastasis. Since I was diagnosed, my son and daughter-in-law buy me a new car when I want. I just got a brand new 2023 -301 horsepower Mini. All of them have been my order, the way I want them with everything that I want them to have. This is my 4th one. It's a gift to me from them so I have something to smile at when I go in for treatment. Or if I want to go anywhere I smile when I go. The thing is so dang fast its unreal. I do it on fantastically heated seats! And I do smile a lot. But through everything QOL is what matters to me most. It's behind all my decisions about my cancer.
I wonder if this would be a good dirt road car. It could just fly over the washboards. Seriously we are probably going to have to rethink our vehicle and probably housings. We are too old (with chemo and covid added) to take care of ourselves in the most severe weather. We are having some pretty bad weather in California and not much of anything is working right now. Now I understand why all of my friends were having babies. Some of them turned out well and bought them cars. Our Poodles do not have the funds to buy me a car.
GM... I'm new to this group!! Sorry to read about your guy!!! He appeared to have lived life to the fullest with lots of memories for you both. You mentioned he lived transfusion dependent for six months. Would you mind sharing more with me. My husband was diagnosed with prostate cancer in 2012. He says he's always been anemic. He started Pluvicto October 28, 2022 has had to have two transfusions since then. We were told it would take two to three Pluvicto infusions before the bone marrow cleared up. We get our second infusion January 16, 2022. Since that time his PSA has DOUBLED!
Hello! Sorry you’re at such a scary place in this journey. Did your husband have both a FDG AND PSMA SCAN?
I am no expert, but here is what I do know. My guys PSA went up significantly after first treatment and was told the same thing as your guy. We took it at face value. Later we learned that an FDG pet scan may have shown that he was not the best candidate for pluvicto. Other countries who have been doing this longer use both scans to determine who is a good candidate . He wishes he had stopped pluvicto and searched clinical trial options before his blood counts got so low that he was excluded from anything. Something about diffuseness is shown on the other scan 🤷♀️ All I know is Brian wishes he had demanded both a PSMA scan and a FDG scan. I’m not saying it would’ve made any difference. I encourage to make a post and ask the guys about it here and do some research on your own. Specifically about the FDG SCAN along with PSMA scan. Best wishes to you! Such a scary time.
He was. The comparison of the two scans is what is important. And you want someone reading them that understands. Please make a post with as much details as possible. These guys will help guide you. You may be in the best of hands already, but they may suggest second opinion as well. Beat wishes to you guys.
So why would a guy with those kind of assets be so threatened by a minor player like the Scout? It is feeling more like envy my man. Not at all becoming on a master of the universe
Our story, like any good one is riddled with light and dark. It’s peak Covid when Brian and I started talking early 2020. He’s just gotten a divorce. He had a fire in his belly, and they just didn’t enjoy the same things. He’s on to bachelorhood.
Bam! Covid time. Not the friendliest of dating environments. To top it all off, a woman that he really wanted to spend more time with passed away unexpectedly. He was devastated.
The Universe opened a door for us. I was a miserable floundering alcoholic at the end of a very bad 20 year marriage. My health was failing although we were only just finding out how bad it was.
This was Brian’s smooth sailing time. We’d only been seeing each other a few months. He should’ve bailed. He didn’t.
I joined him in Hawaii 3 days after being discharged from a 2 week hospital stay. I was in liver failure. I have not drank since. Much discussion was had whether it was safe for me to travel to Hawaii. Not the best place to be in liver failure. He sent me this. Hepatic encephalopathy be damned, I’m going to Hawaii!
Screw Covid, cancer, liver failure and whatever anyone else thinks of the risk.
My first trip to Kaui I landed in a massive storm. I slept in the back of a Colt station wagon (way before your time) and woke up to massive palm branches across the front windshield
We also spent 5 nights here. Disneys Aulani. I’m a bit of a Disney Resort nerd, and this was a dream for me. Beautiful resort. If you have kids in tow… this is where it’s at! As two adults, still very enjoyable but better accommodation can be had for the price tag of this place.
Some of my guys snorkeling adventures. I was not well enough for snorkeling. In fact, I was barley well enough to walk. He had to push me in a wheelchair through the airports. It was actually quite rough for me. This is what we did though. We pushed through.
Goofy tourist fun. Luau in Oahu (I think) Terrible food but a good time was had by all.
I had put on 70lbs of fluid in a month. None of my clothes fit. You’ll see the changes over time. A sick gal I was, but my guy sure looks healthy and handsome. How swiftly we switched roles, but the ride was worth the tough stuff. This is what life is made of.
Cool! So glad to have you here. That sounds right. There were air quality concerns (?) for me or something… I don’t remember exactly but I couldn’t join him. It’s really a shame that I was so sick and he was so well. But… that’s just part of the journey, man. All just part of the journey.
Travel halted for months. I spent 6 weeks in a Nursing Home Rehabilitation to learn to walk again. My guy gets a new set of wheels. We fell in love with Jeep life in Hawaii.
Concerts resume! REO Speedwagon’s first show post-covid. Last time in the wheelchair for me. Physical therapy is helping and my liver is holding its own. We get a nice summer and fall of smooth health sailing coming up for us both. Hope you’re enjoying the ride.
hi Zengal79, I’m sorry to hear about your “ guy “ Brian passing , a soul brother …double brother at that. We have a lot in common. I’m also a hard core biker motorcycle enthusiast yayahahahaya
both of us love hogs and have aPCa in common too . That plus “ the hammer “ my old lady kinda likes her “ beverages “ as much as it sounds like you do - did . She can get a wee bit “ testy “ sometimes but we’ve had 44 years together, never the less.
That bagger is a thing of beauty , just love it. Had to finally sell my Dyna Super Glide Custom because my bones are so brittle , just holding it up , at a light , might snap one of my leg bones. Naturally I had it loaded with screan’in eagle goodies , crank to top end. Broke my heart.
I love 4X4 too ( doesn’t everybody ) , it’s a pick ‘em up truck tho . Silverado 4X4 Z71 it does a good job out in the boondocks too.
Now I ride on a three wheeled etrike I call my Hardly-A-Davidson … my mobility scooter .. can’t walk much these days.
I love your great QOL input here …. And foodie porn too. It’s a great spirit to see you getting deep into. You obviously “ get it “ , especially with both you and Brian’s experience. It’s good to see you getting out and grabbing that gusto as much as you can, while you can . You’ll never regret it.
Keep that great QOL coming, we love it … we love you too sister.
Sweet! It’s a bummer giving up things we love. But, joy can be found in the depths of it all. We always talked about making QOL posts but we really never got to it. Too busy livin’ man, too busy livin’!
Now, that caregiver mode is gone, I’ve got the time and it’s helping me get through this loss to look back at what all we did. We lived more in those last two years than some people do in a lifetime. All about the quality. And… it saved my life.
hop right in, dealing with grief works better with brothers and sisters that know what you are experiencing. also there is a special group for ladies just like you too. You might find some special common ground there as well. Maybe Darryl will hop in here and give you the link … otherwise, pm Darryl and he’ll be glad to help. It used to be on the right side list but I didn’t see it.
check out the HU “ prostrate cancer caregiver’s group “ hosted by cleodwoman.
You can see this at the top of this page on the right side. It’s under “ pinned posts “ … press the “ see more pinned posts “ arrow and go down the list to the cleodwoman post. It’s a special group for caregivers , many that have lost their loved one.
That's a Beautiful attitude, Make Joy outta your BS situation. Make the most of the time you have left, that's my sentiments too with the QoL things that I undertake.
My guy valued his time. It was important to him to not only have great experiences, but also to give back. We volunteered on Tuesdays (when not traveling) for animal transport. A huge van full of 100 + animals were picked up from kill shelters and brought to a meeting point where volunteers would take them to animal rescues. We transported around 10 crates of animals every Tuesday to give them a chance at adoption. We even fostered 3 sets of kittens while we were together, all successfully vaccinated, fixed, and chipped then placed with their new families.
Spreading joy and love. ❤️ Can’t have a bad day rescuing cute critters! Here’s some highlights.
We only knew each other 842 days, not married. It was a whirlwind. I have a good support system and am doing well thankfully. I’m using this thread to tell our story which is helping me grieve with a grateful heart. At the end, I shall say goodbye finally to prostate cancer and focus on the next task at hand… Living well with my end stage liver disease. I plan to live it in his honor each and every day.
I’m in Indiana. I’m basically a pescatarian now. My diet is mostly plant based plus eggs, fish and seafood. I cannot handle animal proteins at all. My health in now quite improved, especially from where I started. Daily yoga practice, and never ever touch alcohol.
A real sweet spot for us! Health wise, I was much improved and Brian was still doing decent as well. This was the “healthiest” trip we had and we enjoyed the heck out of it!
Savannah is one of the prettiest cities I have ever seen and is well preserved not having as much damage during the Civil War as most Southern cities.
Halloween night in Savannah. Literally best date night ever! We dressed up like rock stars and went out on the Savannah river walk scene. Sober as can be, we even sang bad karaoke.
Fuck cancer and liver failure … this was our time!
Thanks! We really made the best of it. We were a good team. His children are being amazing and selling me his Jeep for quite a bargain. The tradition will continue.
I can’t even imagine! We went into dinner at GW fins and Bourbon Street was pretty quiet. When we finished dinner, it was mayhem! I would’ve had a good time back in the drinking days. Lol.
I'm so so sorry for your loss zengal. Not everyone gets to find that person who completes them. It looks like you did and you embraced every second of it. I've enjoyed your posts and your spirit and outlook. Your love story is beautiful and an inspiration to us all. Sending you big hugs.
Some fun from our cruise. We received some pretty bad news regarding his disease progress. We laid down and cried… and the man we got back up determined to make this the best vacation yet… and it was. It SO was.
In May, things weren’t going great. LU177 was failing. We had a few days of no appointments. Decided to take a last minute trip to Galena. After much trepidation, we decided to take the bike. It was a 4 hour ride or so. His words were, “I’ll regret it if I don’t.” We didn’t tell a soul. We just went for it! Scheduled massages for the evening we arrived. Spent a few days eating good food. It was hard, but what a beautiful time we had.
It was a neat experience for sure. They are so stinking cute! Glad we did it but I left a bit with mixed feelings. The animals seemed healthy and well cared for. It provides jobs for the locals but the idea of an “animal sanctuary” means something a little different in Honduras.
In August we traveled to SoCa to see if Tanya Dorff could possibly help us. She was wonderful but the news was the same. Like always, we made the best of it and enjoyed the beauty around us.
We stayed near where the Top Gun house is. They saved it somehow. They have a pie shop in there now and a replica of the motorcycle in the movie. I found a great daily yoga on the beach and this was Brian’s last time at the ocean. We had a beautiful time.
We’ve come to the end of the road, quite literally. We continued to find as much joy possible but closer to home over the last 6 months.
We got outside every chance we could. We turned down the lights and watched concerts on the big screen tv. We loved each other through the worst of times. Thankful for the magic of my memories. We really did something!
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