D-Day

   I never connected the dots until just now. In Jest, I said my diagnosis date was 666 but never thought of it as being on the day that thousand and thousands of Americans, British,  and a few french 😂 soldiers, kids no doubt scared shitless waiting for the gates of hell to open as they approached the beach amidst a hail of enemy fire. They paid the ultimate price to save the world from Nazi’s. I am humbled and grateful to the greatest generation for answering the call. Thank you and may our Nation forever be worthy of your sacrifice. 

Dang! That teared me up. I hope it touches you to  read this as much as it touched me when I wrote it. What am I talking about?Nobody reads this. Nobody replies. Thats okay. If it helps one person. 

  Today is my DX-Day anniversary. Today marks 18 years. 

To those of you who know my story, you can skip this, but for those who do not, 18 years ago, I was diagnosed with stage IV Prostate cancer. My PSA was over 3200 and the cancer had metastasized to my bones, my lymph nodes and my lungs. Although I was never officially given a prognosis my oncologist at the time. ( he has retired as has my original urologist, as have I ) told me on my 1 year anniversary he did not expect me to make it a year. My 2nd oncologist, gave me a  prognosis of 3 and a half years. That was 15 years ago. To put it lightly, I have done well.I have defied statistics. I have defied logic and I have exceeded every expectation. Some say I am atypical. Statistics would agree. I believe God gave me second chance. 

   A couple years prior to my diagnosis at age 42 I was a mess. I had destroyed my life. Most nights I wanted to die. I wished for it. In a lot of ways I was just done. Nothing had meaning. I was numb. Have you ever wondered if you made yourself sick. I wonder that a lot in hindsight. Some people would say there is science to back it up. There are cases where people actually died of a broken heart. Mine wasn't broken. It was on life support. 

   I was starting to get my shit together when I was diagnosed with this disease. I had family supporting me and someone special in my life. She helped open my eyes to the good in the world and in myself. We married a year later. . God showed me that he was real and breathed life into a heart of stone. Suddenly i was thankful for my life. I was really happy. I wanted to live my life no matter how much longer I had left and I did. I am a better person than I was back then. I am so thankful every day of this journey. It has been a wonderful crazy beautiful ride. 

  Sunday I will celebrate 17 years of marriage to my wife. On our wedding day I i promised her 30 years. Only 13 to go. I may need to renegotiate. 

  

We lost our boy!!

It’s still hard to talk about. It’s hard to think about. I been on hormone blockers for so long now it doesn’t take much to turn on the waterworks. I am okay with that.  Grief should be experienced. It should be felt. It starts the same every time. Sadness. Gut wrenching loss! Tears! Memories, laughter because of the memories. These symptoms may come in no particular order but they always end the same! It ends with Healing!! It ends by letting go and knowing those we lose are part of everything we see and everything we can’t. Sometime In the future, I will be able to Remember, and hang out in the joy of the time we shared, and be happy for where he is and I believe with all that I am that I will see him again. 
Sir Broderick Charles the First.

Brody was an impulse purchase. Mandy worked for an OB GYN, and was having serious issues with wanting a baby. Brody was the answer. The day we brought him home he could fit in the palm of our hand and he was a constant companion for 15 years. Truthfully, when we brought him home, I assumed he would live longer than I would. The average life of a Pekingese is 12 years  I have stage 4 prostate cancer. Brody made it 15 years. He lost his eyesight three years ago, trying to take away a ham bone from a dog that was four times his size , it didn’t phase him. Up until the last few months, he would just decide to leave the yard and head into the hills. He was fearless he was brave. He was absolutely beautiful. He always found his way back home but there was times I would be out there looking for him  til midnight and then I’d walk around the corner and he’d be sitting on the porch. 

One morning not too long ago. I woke up and something was wrong. Pekingese breeds are prone to seizures so occasionally Brody would have one, but they didn’t last long so we just held him for a couple minutes until it was over and then he was fine again. He’d had a seizure in the middle of the night and it caused him to have a mild stroke. He wasn’t in pain and as the day progressed, he got better and better and before long he was back to being Brody. Later the following day he had another stroke. It was time. We knew he wasn’t going to come back from it. 

We were ready. I mean seriously he was old and we talked about it constantly knowing we were going to have to take him in, but we had both decided that as long as he was happy, we would wait because he wasn’t in any kind of pain. 

    It was a hard day but it was also wonderful.  Our veterinary office was closed so we had to call around and although we had to drive an hour, the urgent care facility was amazing. They took us to a carpeted room with a couch and a chair and some toys and a fire burning. They took him to another room and started an IV and then they brought him back to us. They had given him a mild sedative because he was in a little distress. He relaxed and even played a little with us and gave us lots of kisses. We were able to say goodbye, and we held him while they administered , the medication’s. 

    It’s been a few weeks and I am healing. Right now I’m in tears but I’m smiling and I am remembering. . Nasty ass little dog!😂😂😂 

Day after trying to take on  Bulldog!

Mommas boy!

Road trip!

Camping life! Damn straight I’m good lookin’

Letter to a loved one!

Todd1963

Posts : 3624

Posted 4/9/2024 6:53 AM (GMT -8)

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The following is a direct reply to an email. I omitted anything that might be identifying. After I reread it before I sent it it occurred to me that perhaps others might benefit from it.

I apologize for taking so long to reply.. April is turning out to be a very busy month and we are only nine days in. I’m sorry about your cousins diagnosis. It’s difficult to get that kind of news. I was diagnosed at 42 and I just celebrated my 60th birthday a few months back. I understand that the initial phase of diagnosis and treatment can be a difficult time. It was for me. Seemed like every bit of news was worse than the previous bit of news. It’s hard to believe I’ve been playing this game for almost 18 years now.. The good news is Science has gotten pretty good at fighting this disease. There are so many new treatments, and even more in various phases of clinical trial.. Your cousin was diagnosed with prostate cancer at a very good moment in time.. There’s not much I can say regarding my treatment, and how it correlates to your cousin. When someone says they have Prostate cancer it’s like looking at one piece of a puzzle and trying to figure out what the completed puzzle is supposed to look like. You have to have more pieces before you can begin to understand.. Is the cancer a super aggressive cancer or is it more of the middle of the road type. What is the genetic makeup of the cancer. How far did it spread. Etc.
  
    For example, my PSA was over 3200 my Gleason score was seven. The cancer had spread to my lungs, bones and lymph nodes, and maybe even my brain, and there was no genetic test back in 2006.. Each new piece of the puzzle correlates to a different form of treatment.. Depending if the cancer has genetic markers, there will be targeted therapies that do a better job against a particular type of cancer..
 
   There is a standard of care. It is in a state of constant evolution, so none of the  pieces are set in place. That is why it is extremely important that your cousins medical team is the best he can find and specializes in the treatment of PCa.. Where he calls home makes a  difference. In my locations I would be looking at Fred Hutch or OHSU. The point is these places adhere to the most recent science and are constantly  on the cutting edge of science. They are all affiliated with a huge research network.. Search SWOG and see what you can find in your area. They are an enormous  research group. Oncology understands that this medicine plus this medicine plus this medicine used in conjunction with other therapies will prolong time to progression and time to death by such and such amount of months and years, but honestly, it’s still kind of a crapshoot. Every person and every case is different. The “Humane spirit” really tends to mess up medical prognosis.. Just remember, currently at stage four, there is no cure. Every treatment your cousin receives will be considered palliative in nature. Palliative simply means that it will provide the best standard of living possible. Palliative care is very effective. I know men who are well advanced with aggressive cancer that have done extremely well for seven or eight years now. Your cousin could very well  live a  long time. Of course, I suppose he could die tomorrow which truthfully makes your cousin no different than anybody else in the world. Although he may or may not have a better understanding of how his life ends he could be hit by a bus tomorrow and all of that speculation goes out the window. Live for today, Carpe diem, are no longer words on a inspirational poster. I guess you could say what’s most important is to “find
out what’s most important”. I know cancer is scary but everybody dies of something , and there is not one person on the planet who knows how long they’re going to live. Your cousin will go through current standard of care protocols. He should follow the course of treatment and he should really try to quit worrying aboutcancer because it’s a waste of spirit. He should ask his provider to look into clinical trials that fit his profile. He is new to treatment so there may not be many. His biopsy slides should be genetically tested. They probably have been already if he is seeing anyone who knows what they are doing.
 
    This is something that is easy for me to say . I have done very well against this disease for a very long time. In someways, I have grown complacent when it comes to dealing with cancer but that is because I spend most of my time choking the life out of every single day. Sometimes I think the reason I’ve done so well against this disease is because , I was having so much fun living my life that cancer just became one of the details I was forced to deal with. The rest of the time I tried not to think about it. It wasn’t always easy and it still creeps through  a crack in my armor to haunt my conscious thoughts , but I really do my best to brush it aside and let it go. Faith in God plays a huge role in my life. I have come to believe that if you seek out the little miracles, you will find them. Sometimes you even find a big one. It really is a miracle that I’m still here because the life I was living was incredibly toxic. Cancer changed that. I live better, eat better, laugh out loud often, enjoy the often overlooked moments with friends and family but most importantly with myself. Those moments of solitude where I am alone with God as I understand him to be .  This disease has been one of the best things that ever happened to me and even with all of the trial and sometimes tribulation of a stage four prostate cancer diagnosis I am thankful for my diagnosis. It changed my life. Todd

Attitude adjustment!

    It was brought to my attention  that my blog hasn't been as upbeat lately as it has in the past. It's true. It hasn't. There have been reasons but I am starting to get back to my old self again.

   Thanks to a new way of bonding the prosthetic joint to the bone, on December 30, I had a total joint replacement on my right knee. . The surgery was successful and the doctor wants to do my left knee but I don't think that's going to happen. One thing that was not taken into consideration when I chose to try knee replacement was the muscle atrophy that would take place while I was healing and the difficulty I would have rebuilding muscle mass. My testosterone is undetectable and will be for the rest of my life. It is extremely difficult to rebuild muscle mass without testosterone. I suffer from chronic muscle fatigue and it has really been frustrating as I have been active my entire life.  My knee no longer hurts so I am not complaining but it has had a negative affect on my overall well being and mind set. I cannot do a lot of the things I use to do prior to surgery. I get tired. Simply walking around our property is exhausting. To stay in shape I use to ride my bike a few times a week. Now it sits in the garage. It was also a very long cold winter and I was largely housebound for the duration.The sun has been out for about a month and it has helped a little but it also brought a new problem. My knees are now the largest part of my leg. Wearing shorts looks stupid. At least I have not lost my sense of humor.

   For many years, I haven't been affected much by Prostate Cancer symptoms or treatment side effects. They were mild or I simply got use to them. Side effects were largely ignored. This is harder but I will get through it.  

   We went to Hawaii to see the grand daughters. It was a good week. I miss them. I miss their parents too but honestly it really is about the grand daughters. It seems every time I have major surgery I get to spend a week in Hawaii during recovery. I am such a lucky man. No... lucky is the wrong word. I am blessed beyond what I ever deserved. I am so grateful for my life and my family. 

   I am finding new things to do. I can't really ride my wakeboard any more but we fill the boat with friends and family and sneak out to a secluded cove and spend the day swimming and I tow everyone and teach the kids how to ride the board. It's good but I do miss catching big air.

   We bought an old Harley soft tail  and have been enjoying exploring our home in a new way. Life is still an amazing wonderful ride. I think maybe I am just slowing down a little. As my mom use to say... "act your age not your shoe size." I think it is happening!   

              Enjoy the Ride!

What would we do without caregivers?

It  will be 17 years in June since my diagnosis. It is so surreal! Statistics gave me five years or less. My doctors gave me less than a year!  17 years. The cancer is still undetectable. There is a trade-off. There is a sacrifice. Men with advanced disease lose a lot of who they think they are along the way. We do, however, find out who we really are!  Testosterone in men  Strengthens/builds bone, strengthens/builds muscle mass, maintains mental sharpness, and accounts for all of what we consider sexual libido/function.  Low T is associated with osteoporosis , depression, fatigue, heart conditions, hot flashesloss of libido, etc  

  Responding extremely well to 2nd gen ADT has extended my life. but I have paid a price. 

      It's getting harder.

I was 42 years old when I was diagnosed, so I was still in that age group where I was really active. The first side effects, of ADT  was fatigue. That could have been the death nail  for me if not for my caregiver, true love, my Wife.  Mandy was dogmatic at keeping me active. She saved my life. Staying active, reduced the fatigue and the hot flashes and helped me to maintain mental sharpness. It combatted depression. I didn't enjoy it and I didn't want to do it but after a while when my body had adjusted to its new chemical make up , and while i had been working through it  by being active, I was able to fight back most of the side effects. I stayed active  while adjusting to a new normal. There was no way I was ever going to recover libido, but we work through that as well. 17 years down the road, we are  still in love and working through that as well.

The newer second gen drugs work better at blocking/stopping Testosterone production. in my case, the drug that I am taking works by blocking residual testosterone production in the adrenals. That would be fine if it was only blocking the testosterones, but what abiraterone acetate does is shut down the adrenal system. This is why patients on Abiraterone acetate have to supplement the steroids their body no longer produces. Like I said, it's a trade-off. The side effects just got worse. It would be fine if I was still in my 40s or even in my early 50s. I am not. When first I started this medication. I was younger.  It was easier. Now I am aging and I'm still trying to maintain physical activity but it's getting harder. Mandy rides her bicycle alone probably half the time. If I ride my bike now it's hard to ride it again for a few  days. The last hike we went on together was on a paved trail on Mount Rainier. I no longer go to work every day. It's probably a good thing because I need naps. I can't work in the yard like I used to. The only way I am able to get anything done  is because when we bought our home, we bought one of those miniature Kabota tractors. It  has been a lifesaver. I can mow the lawn with it and it has a loader bucket, so I'm able to do the necessary jobs that go along with homeownership. It's getting harder . 

The sun came out last week. I was able to go outside. I felt better. It's hardest in the winter time. I used to go to work and although when I was there, I slept in my chair, a lot, at least in the winter time I was able to be a little  active. Now I am just home. I have nowhere to go. I have nothing to do it's cold and it's wet or it's cold and it's snowy or the sky is blue but it's still bitter cold outside. I think staying active is what helps most with the other side effect of androgen deprivation therapy,   depression!.  We are vitamin D, deficient here in Southwest Washington.. The winter blues are very real here. It's worse on androgen deprivation therapy. Winters are hardest, even when I supplement vitamin D.

It's hard, but I have people. I have people who raise my spirits. They cheer me up simply by a phone call or stopping by for a cuppa coffee with a little whiskey, mixed in for flavor. I have my wife who has been there since day one and has never ever stopped being my cheerleader, and a well of encouragement. Sometimes even a swift kick in the ass. Where would I be without her? Where would I be without them my brothers, my friends my family my wife continue to be there for me. They continue to give me a reason to live. They continue to encourage me to live my life every day . Where would I be if they were not in my life? I don't think I would be here.  Kindest regards, Todd

Elk Hunting

   Elk hunting season has come and gone. I guess I should add it was unsuccessful. How could it be successful when I can’t even walk in the woods without falling down and every time I fall down I worry I’m not going to be able to get back up. I am just starting to realize there are things I can no longer do and honestly I probably shouldn’t try. I wonder if you can get one of those help I’ve fallen and can’t get up buttons that will work in the wilderness.? Yes that was a joke!  I had Oncology dentistry smack dab in the middle of the elk hunting season. What a drag having to come out of the woods to go to Portland! That place has become such a shit hole. There is literally homeless tents and garbage and human feces everywhere. I quit hunting Friday basically. Saturday morning I just packed up and went home. Day before yesterday Monday the 14th  I did have to go to my regular oncology appointment. Oh yeah, back to Portland. Having to go back to Portland was definitely the bad news but the good news is my PSA still remains undetectable and stable so I guess I’m doing great. Right now I’m sitting in the hot tub debating whether or not I’m going to get dressed  And drive back to Portland again. I don’t really want to go to Portland but at least this time there is a good reason for it. After much consideration and soul-searching and wondering if I was going to have buyers remorse, we bought another used Harley Davidson motorcycle. It is ready to be picked up. They are actually going to deliver it to my doorstep on the day before Thanksgiving next week but looking at the forecast it’s not supposed to start raining until Monday and although it is unseasonably cold here it’s supposed to be sunny for the next Three or four days. It will suck to have the bike sitting in the garage and only be able to look at it. If I went and got it today I could probably take it for a ride tomorrow and Friday. Anyway that’s it for now I hope you guys are all staying positive . 
Todd

I’m not Superman

   I always thought that I could do anything. My philosophy has always been nothing was going to slow me down. Push through the pain and get it done. I was incredibly naïve.  I never wanted to be on disability. I like working but Time catches up with all of us at some point. It’s a fine line that I walk. These last few months have been really hard. I feel myself slowing down. I guess I’m not really superman after all. 

   My oncology appointment is coming up next week. I fully expect changes. I don’t know what that means at the moment but I just don’t feel good anymore. I have been having hot flashes again. I have not had noticeable hot flashes in years but here we are. I have terrible night sweats. My bowels are messed up. I often wake up in the middle of the night having to use the bathroom. Sometimes more than once. It would be fine if it was just to urinate but that is not the case.. My mind has been slipping lately. I can’t remember anything. I drop things constantly. It’s like I don’t have any feeling in my fingertips. My brother asked me to help him put a roof on his deck. I used to be a pretty good Carpenter. I could work all day and get stuff done but now everything is changed. I was helping him and I broke out in a cold sweat and felt like I was going to throw up . I lost my balance and fell. I lose my balance all the time now. I try to shield Amanda from what I’m going through. She worries too much. I think she knows though. I am losing interest in things I use to love doing. It’s not worth the pain anymore.  My knees hurt so bad walking has become increasingly difficult. I still walk to the mailbox with her and sometimes I will go up to the lake with her and walk through the county park but I am in constant pain when I do. I go through a large bottle of Advil every month. I worry I am killing my kidneys. Lately she has been going by herself half the time. I have been having problems with my vision. Amanda calls them ocular migraines I don’t know if that’s what they are. All I know is that my field of view flutters in my peripheral vision. The fluttering gets gradually worse until I only have a narrow field of view that I can see clearly through.If you have ever watched heat waves on asphalt during a really hot day that is kind of what my vision is doing. They usually last half an hour. I don’t know if it is cancer related. All I know is I used to have them early in my diagnosis but they went away when the cancer became undetectable. They came back again 5  years later while I was awaiting an insurance decision for Provenge and went away shortly after receiving the treatment. Now they are back. I have a nodule in my groin. I think it is an enlarged lymph node but I will let my oncologist know about it at my visit next week. I thank  God that I don’t have to go to work anymore. There’s no way I could do that. When we moved into this new home there was a lot of stuff that needed to be done. I was working full time at a labor intensive job and couldn’t do both. After I was approved for disability I worked my ass off to do what I could do by myself but I don’t think I could do that again honestly. I ended up hiring a contractor to complete the job. We didn’t have the money to do it so I took a large chunk of money out of my 401(k) to have it done. I worry about the future. Not so much for me but for Amanda. What if I die. What will she do. I had hoped to live long enough that when my time did come there would be enough money in my 401(k) to at least pay off the house but with the stock market going to hell that is not likely to happen. 

   We have had this amazing wonderful life together. For so many years we have enjoyed boating, wakeboarding, waterskiing, hiking, bicycle riding and traveling. I just don’t care to do those things anymore. Sure I can probably get on my board and let her tow me around the lake but it’s not fun anymore. It hurts too much. I still get a lot of joy however watching my granddaughters learning how to do the things I have loved my entire life. We took both of them up to the lake this past summer and they both learned how to wakeboard. They absolutely fell in love with it. I enjoy being on the boat. I enjoy parking in a secluded Cove throwing the anchor and spending the day swimming and relaxing. I enjoy going fishing with my brother and my mom. I guess things change. I have gotten to the point where if a drive more than an hour I can barely walk when I get out of the truck. God forbid I have to ride in Mandy’s  little Honda car. Getting in and out of it is difficult.

   I don’t want this post to be all gloom and doom. I have been finding new things to love that don’t take a toll on my body. Spending time with Amanda riding the motorcycle on country roads is wonderful. We fell in love all over again riding through the national park this past summer. Best of all it doesn’t hurt to do it. We upgraded to a larger and more comfortable motorcycle. Zero down payment and a reasonable monthly payment. The bike is 20 years old but in really good condition and it’s something Mandy and I can do without causing more pain so anyway that’s where I’m at right now. I’m supposed to have knee surgery on my right knee and then later next year maybe getting my left knee done.  We shall see how the right knee goes. The orthopedic surgeon says my left knee is worse than the right knee but the right knee is the one that keeps me awake at night. I do know it’s going to put me out of commission for a while. It’s a good thing we have a comfortable couch.