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.

Top of the World.

  Last weekend Mandy and I rode the Sportster up into the Mt Rainier National Park. OMG!!! Stunning. This past summer we have started to explore our new home. It’s not like this home is all that far from our last home. I think we are only 40 miles from Toutle but we are in an entire new river valley with new hikes and new mountains. 

   I find it odd that I am 58 and have never explored Mt. Rainier. I wish I had done it years ago when I still had knees. Today is the third day since going up there and The pain is just now waning. I hope to recieve my first new knee this December before my insurance rolls over. Perhaps Iwill have the second one done next December. 

  Mt Rainier National park sits almost dead center of southwest Washington state. It is a massive dormant volcano surrounded by alpine meadows, high mountain lakes, and old growth forest. There are hundreds of miles of hiking trails through the park. The mountain is roughly 14,600’ high. Paradise lodge sits at 5400’ of elevation. There is a paved trail from the lodge that leads to an overlook that looks out over the Alpine Meadows. The fall colors were extraordinary. We saw a mountain goat, deer, and this guy. 

   

   The road leading to Paradise Lodge is a beautiful winding two-lane road with stunning vistas and overlooks. The speed limit is 35 mph so it is a great place to ride a motorcycle.

   

If you are disabled due to cancer you may be eligible for free access to all of the National Parks. This day trip was very very GFMPH.

Faith. We must live like we don’t know.

    In previous posts I have mentioned the hope study! What is the Hope study?  Well the skinny version way over paraphrased to suit my country dialect goes something like this. A lot of years ago probably before I was born a bunch of scientist decided to try and figure out if Faith played a role in life and death situation. The control arm of the study took a bunch of mice or rats or some rodent that they deemed unfit to live and put them in an aquarium and put a lid on the aquarium and filled the aquarium with water to a level where they had to continue to swim or drown! It didn’t take long and they all drowned. I know this is pretty morbid stuff but it is true!!! this happened!! Anyway, that was the control arm of their study. In the trial arm or perhaps I should call it the experimental arm of the study they did the exact same thing but when the mice or rats or rodents or whatever they were started to struggle  they pulled them out of the water they put them in a warm bed and they fed them.  Just one would say giving the mice faith that they would survive. The next day they did the same thing but it took like a ton longer for the mice to begin to struggle it was like 45 minutes later they were all still swimming because they had faith that they could survive. 

    This to me is a really cool story and I could post a link to the study but I am inherently lazy. I’m also not very computer savvy so if I can find it you can find it just type the HOPE study into your search engine and I won’t swear to it but I think this was at Jon Hopkins or a similar University.

   It is my profound belief that if we truly have faith that if nothing else we can fight this disease and we have better outcomes than people who don’t. Faith!!!! What does this mean? How do we get there? I don’t know! As stated prior I am inherently lazy and unfortunately my mother said I always had to learn lessons the hard way so here I am. I am working on 17 years of dealing with this disease. Has Faith played a role? I think it has but to be honest I don’t know. I don’t really feel like I have a lot of faith but I suppose it would be the definition of faith to the person reading this post.. I’m not sure that makes sense and sometimes I struggle to explain the things I’m trying to say  Which is why I write. Because I am not very well educated and grew up big time blue-collar I struggle to convey the message. There is also 15 years oh hormone therapy rotting my brain. I do it better by telling stories because really that’s all I’m good at. I’m good at telling my story and I pray daily that my story helps others. 

I hold to the standard that faith by definition is somehow arriving at a place where you just know that your disease has been cured. I’ve read stories of people that just simply quit going to the doctor because they believed they were healed by Jesus. Maybe they were I don’t know. I know that I don’t have the faith to stop going to the doctor so by definition I don’t have faith.  Maybe I have something better than faith. The truth is I don’t want to be able to move mountains because I could never be trusted with that kind of power and responsibility. Maybe just maybe I have the next best thing.

Many years ago shortly before my diagnosis I had come to a conclusion that I really did want to live. At that point I begin to put my life back together and I believed my life wasn’t over. Imagine my surprise when they months later they told me like my life was over. At that point in my life there was nothing I could do but surrender. I didn’t surrender to the disease. I surrender to God‘s will in my life. It became very clear to me that I was no longer in control. Now I have a definition of God but my definition  is not everyone’s definition in fact I’m probably in the minority but that’s OK because everybody has God. They don’t know it, or they know it and they don’t care, but to some people God is self to some people God is science to some people God doesn’t exist. To me he does. God exists.  He wants me to use my gifts. So I do what I do. As best as I can but God gave me the gift of life as well as other gifts and to waste a day of life worrying about a tomorrow I am not guaranteed has got to feel like a slap in the face to the person who gave the gift. 

To church goers reading this blog, I want a lot of you to know that I don’t fit into your definition of Christianity. Sometimes I drink and sometimes I get drunk. I curse daily. I ran the zero turn lawnmower over an underground nest of yellow jackets! I am here to tell you I am prolific in the art of cursing. Sometimes you just gotta send it. 

Oh I believe in God the father God the Son and  God the holy spirit and I believe Christ gave his life in my place. In my opinion everything else is just details.

Now to get to the meat and taters of what I’m trying to say. There’s a song that says live like you were dying by Tim McGraw I’ve quoted it before. I think that song is a step in the right direction but I believe you’ve got to get to the point where you live like dying doesn’t matter. We’re all gonna die. It’s going to happen to every single one of us. I believe I have a day and an hour And I accept that. Surrendering to it may be the best thing I ever did.  Surrender to the fact that we are not getting out of here alive and resolve to liveour life every day like cancer has no power over us I think it comes  down to surrendering honestly. It’s a mind set. It’s a matter of the heart. 

I am thankful for my life. Oh I will live every day like it is a gift to be treasured and that it may be my last one. Somehow I got to a place where the only time I believe I have cancer is when I have to go to the doctor.

16 years 3 months and counting.

I am still here and still undetectable. Life is pretty good. I was able to complete the lions share of the chores I had planned for this past summer and was even able to spend a lot of time on the water recreating. Life seems to be slowing down and I feel as though I have entered a time of peace and contentment. I wish my sweetheart could retire with me but at this time in our lives it just doesn’t seem to be in the cards for a while. Maybe if I had a rich uncle that kicked the bucket I would be able to make that happen but I think I have a better shot at winning Powerball and truth be told I don’t play the lottery. Personally I feel like I won the lottery the day I met Amanda. Living in the country certainly has been a blessing. Right now I’m sitting in the hot tub looking out at the woods that surround our home writing this post. The leaves are starting to turn and there is a chill in the night air. As wet as the last winter and spring were I can’t believe I’m saying this but I really wish the rain would arrive. We need it. Ever since Covid started in 2020 my patient advocacy work has pretty much went down the toilet. I often think of starting it up again but truth be told I lack motivation. Maybe that’s what this post is but probably not. I live in the middle of nowhere so playing an active role in a support group is off the table. I haven’t been playing any music however we did recently start rehearsing again. It is comforting to know that even though I am now 58 years old and have been living with advanced prostate cancer these past 16 years three months and one week I can still tear it  up on a slalom ski behind our boat.

On a positive note my oncologist signed off on knee replacement for me and I have an appointment next Friday to discuss it with a surgeon. If I am able to have a knee replacement I’m hoping it will come after mid November. Elk hunting season always starts the first weekend in November in our neck of the woods and I don’t want to miss it. I would rather hobble around like an old crippled guy then miss spending 10 days in the woods with my buddies chasing elk. 

I lost another friend to this shitty disease yesterday! We knew it was coming. He had been going downhill for a long time and yet nothing could change his attitude and zest for life. He choked the life out of every single day until the very end. He will be missed. Sonny was a true beacon of inspiration. I never met him personally but I shared treasured phone conversations with him. His attitude was infectious. I believe he is in a better place and out of pain but those of us who remain have lost a beautiful human being. God speed Sonny.

Sometimes I think that is the reason I have moved away from advocacy. Losing friends sucks. I guess however, it is in evitable. We must all say goodbye for a while whether we have cancer or not and I am getting older. It feels good to say that. I am getting older. I have been blessed in so many ways. I am so thankful for my life and for the many friends this disease has brought into it.

 

So many changes

   Man what a year it’s been. Looking back I see that it has actually been almost a year since I last posted. There have been so many changes I don’t even know where to start.

   First of all we moved. Mandy was offered a job that she just couldn’t refuse and our thought process at the time was I will only be working at most six more years .Moving closer to her employment seemed to make the most sense. Moving was a wild ride. I didn’t believe our house was going to sell especially for the exorbitant price we were asking for it. Within 22 hours we had three full price offers. The offer we excepted was a cash offer.  The people buying our house closed on October 15 and we closed on the new home October 16. We had 24 hours to be out of the house. Thank God for really good friends or we would not have finished on time. It is amazing how much actual crap a family collects over a 15 years span living in one place.  We hauled off at least 10 loads to the dump and recycling center, had a garage sale,  and gave a truckload of stuff to goodwill. We still had a carport full of stuff that we gave away to whoever would take it. 

   We love our new home. It was only five years old when we purchased it and it is everything we always dreamed of but never thought we could afford. We have six beautiful acres with a year-round creek running through the back of the property. We can see our closest neighbor but we have to walk out into the driveway to do it. Deer and elk graze through our property regularly and we have seen bear and Cougar scat on occasion.. We really are in B.F.E. though. I mean we are only 1/2 a mile from a Highway but once you are on the highway it is a half hour to the grocery store.

   In January 2021 I began having a lot of pain in my knees again. My orthopedic surgeon said there was nothing he could do but replace the joints. My oncologist said no way due to bone metastasis. Long story short, I am now retired. Sonically security approved my disability claim in 6 weeks and I will be signing paperwork at the end of the year to make it official. Adjusting too early retirement has been challenging. This really came as a surprise to me. I couldn’t wait for retirement and eight months into this process I am only just now starting to get comfortable with it. I have lots of stuff to keep me busy. I spent the last five weeks fishing for salmon and deer hunting. I did pretty good at both. Elk hunting season begins on Saturday. Although washington State elk hunting success rates average one elk every 10 years I have managed to do significantly better than that filling the freezer on average every other year. Hopefully in two weeks we will have a freezer full of venison elk steak summer sausage and salmon. ever since my diagnosis in 2006, I have refrained from eating much pork or beef unless it was organically farmed locally. Basically all we eat is wild game wild fish and organic poultry. I am not a trophy Hunter. I hunt for food.

  Once hunting season is over then fishing season for winter steelhead arrives. After that the holidays and then snowmobiling season. All of these things are used to do while working full-time. I have no idea how I accomplish this. It seems I never have enough time to get anything done.

   Yesterday was Oncology day. All  my blood work came back normal so at 15 years 4 months and 26 days from diagnosis cancer still remains undetectable. I hope to enjoy 15 or 16 years of retirement. I don’t wanna be one of those guys who works his entire life retires and passes away a few years later. I guess that’s really out of my hands so I will just give it over to God‘s will.

   

An actual Prostate cancer post.

   Earlier today I did a rant. I just needed to vent my frustrations in a safe environment. Thank you for tolerating me. As long as it has been since I wrote anything you deserve more. 

   I had an oncology visit in late September and all was well. PSA was still undetectable and my lungs were clear. It seems weird to talk about lung metastasis when dealing with prostate cancer. 

   I have been having dreams lately. Strange dreams. Rising PSA dreams. I have also notice a weaker stream  when urinating. Put the two things together and it brings a certain amount of anxiety. I am okay. Although difficulty urinating is a symptom of prostate cancer it is also a symptom of BPH. It seems I have survived long enough to develope symptoms of growing old. It is a bitter sweet emotion. I am happy about my continued success at beating the crap out of cancer (Thank you God) but I am getting arthritis in my knees and shoulders. It’s harder to do the things I love. I just know I have to keep myself as fit as possible. I turn 57 in a couple weeks. I want to continue to water ski and wake board and ride snowmobiles. 

   I started taking flow max a few days ago and my symptoms are beginning to subside. I feel a little mrw at ease. 

  We moved. I went into it a little in my previous rant but it was in the context of frustration and anger. We are in our forever home now. We bought a beautiful home on 6 acres with a creek and it is a quiet forested location. It is near our summer and winter recreation area and we honestly couldn’t be happier. Mandy even let me buy a tractor. Someday she will actually let me drive it. I think she likes it more than I do.

   I have been stage 4 for 14-1/2 years. It’s really hard to believe. I am being allowed to see my dreams come true. I feel so blessed. Life is really a wonderful ride. Her are a few pics. 

It’s been a while! Sorry!

I’m really sorry to all those who follow this blog for the length of time between posts. As I’ve said before it is difficult to write when there is nothing new to write about. As for my health, I’m doing fine. It has been eight months since I restarted treatment and the cancer has once again been put to sleep. My latest PSA was undetectable a month ago. Once again I have no libido but that is to be expected and Mandy and I are able to work through it.

   Today I participated in a market research study. Although the name of the treatment was not revealed I am making an assumption that it is Relugolix. Relugolix is an LHRH inhibitor much like injectables such as Lupron but in pill form. It is one small pill taken daily. At present I do not know if they have completed the phase 3 trial but I know the FDA has released it under the right to try act.

  If the promises hold true, this is a wonderful advancement for men with advanced prostate cancer. The medication acts quickly reducing testosterone to castration levels in as few as 15 days with no testosterone flare. The medication was well tolerated with side effects similar to injectable LHRH inhibitor’s including fatigue, joint pain, 54%,  diarrhea 12%, constipation 12%,  and hypertension 8%. Best of all with this medication there was a 54% reduction in cardiovascular incidents. Most men who went off this medication experienced a testosterone rebound within three months. I will not go so far as to say this is a game changer yet but it is definitely a step in the right direction.

   On a personal note. When Mandy and I got together one of her most cherished possessions was a1978 V.W. Camper van. We were poor and hard up for cash. I talked her into selling it. Last week I repented for my sin.   

Meet Sunshine. She is a 1972 V.W. Transporter and she is as close to mint condition as I have come across. I cannot believe how much these things have gone up in price but I promise you it was worth every penny to see my wife’s face light up.

First PSA Since restarting treatment

I have been putting off having a PSA and other blood work for a month now. I think maybe my psyche was consumed with what if. What if treatment didn’t work? It has been a long time disincentive I felt that way. Two days ago I sucked it up and drove to the cancer center. I shouldn’t have worried. In 3 months since restarting treatment my PSA fell once again to undetectable levels. So did my Testosterone. I miss it. Man do I ever miss it!! Oh well. I haven’t had any side effects from treatment except for loss of Libido. I guess I’m doing okay. 

   A lot has happened disincentivized I last wrote in my blog. Hunting season came and went. I have a freezer full of venison and elk. It is also full of halibut and salmon. I guess we will be eating good this year. 

   I had shoulder surgery a couple weeks ago to clean up a rotator tear and some bone spurs. Currently I am a house husband until late January. I am kind of bored but I am making myself enjoy this. I don’t get much time off work.

   My daughters and granddaughters are here for Christmas. It will be good to spend time with them. I hope you all have the Merriest of Christmas and the happiest New Year. 

Two weeks since starting treatment

     Today it has been two weeks since I restarted cancer treatment for my stage IV prostate cancer. There’s really not much to say. I feel really good but I attribute all of that to the prednisone. My oncologist believes that for the last 10 months I had been  suffering from adrenal insufficiency. Zytiga shuts down the adrenal gland. Patients taking Zytiga supplement with prednisone. Often, patients who stop taking Zytiga find that their adrenal system never fully restarts. This was true in my case.  Once I resumed the prednisone my body was getting the steroid it needed to repair itself. 

     Prior to re-starting treatment I had received a referral to the local orthopedic clinic for the chronic pain I have been suffering in my shoulder. I had already received two Cortizone shots to try and relieve the pain. The first shot worked pretty good. It seemed  to relieve the pain for several months. The second shot lasted only a few weeks before pain returned. Two years ago  I was leaving work and slipped on a patch of wet moss. I fell hard and absorbed weight of a full body impact onto my left forearm driving my shoulder straight up. It has been problematic ever since. Friday last my shoulder was X-rayed. Next Monday I will have an MRI. I am no longer certain the MRI is necessary. Since restarting prednisone much of the pain has dissipated. There is still mild discomfort however I am not so sure the MRI will detect anything that can be repaired by arthroscopic surgery. Time will tell.

   I am finding it somewhat easier to urinate this week. I take that as a sign that treatment is once again putting cancer to sleep. Chronic diarrhea has returned since starting Lupron. Huge bummer. My libido is waning. Worse bummer! Oh well, Mandy and I have worked through this before and know how to keep intimacy alive.

   On a positive note, we broke down and purchased a hot tub last month. It arrived a week ago and we have been using it every day since. That may also have something to do with the absence of shoulder pain. 

   That is about all I have for this update. Life is good. If you have been diagnosed with late stage cancer and have not heard it from anyone else, I want you to know there is hope. A diagnosis of this disease does not mean you have been given a death sentence. Thee is hope. There is hope! THERE IS HOPE!!!!

Day 1 update

    Yesterday I felt fantastic. I felt better yesterday than I have in months. None of this made sense to me. Androgen deprivation therapy is not exactly quick acting. Once you receive your injection it takes a while for it to get into your system. PSA has a half-life of two weeks therefore there’s no way there was a reduction in PSA. I was trying to figure out why I felt so good. It hit me this morning. It was the prednisone. To me this is the only logical explanation. I am speculating that my adrenal gland may have started up somewhat but still has not been working the way that it should prior to Zytiga. With this in mind, it stands to reason that my body has not been producing enough of its own steroid for the last several months. This would cause my joints to ache and my muscles to ache and nothing to really work the way it supposed to. Once I started taking prednisone again my body stopped hurting and I had more energy. There is a negative side of this. I haven’t slept very well the last couple of nights. Maybe my body doesn’t need as much sleep now that it’s getting the steroid it needs to function correctly or maybe the prednisone is keeping me awake until I adjust to it again. Either way I feel better and I’m not falling asleep at work which is a bonus. Not only that I felt so good yesterday that I dug a ditch approximately a foot deep and 10 foot long, install the drain pipe off my downspout and refilled the ditch in an hour. I could not have done that two days ago.

   Last night my mind would not shut down. I spent a good portion of the hours I should’ve been sleeping thinking about prostate cancer. Imagine that! In my mind I was doing mathematics regarding PSA doubling time. I realized that with a doubling time of 4 weeks it would only take another 10 months for my PSA to reach my prediagnosis level of 3200. Try sleeping with that on your mind. As terrible as I had been feeling with a PSA of just over 3, I couldn’t stop thinking how bad I would feel with a PSA of 3200. The thought then occurred to me that if treatment ever stopped working I would probably only have a couple years left to live. It was a long night. I guess I must have nodded off around 1:00 a.m. My usual bedtime is 9:00 p.m.

   When I woke up at 5 it hit me that my discomfort was not cancer symptoms but rather a lack of steroid. I call that a gift. 

   I am not looking forward to treatment side effects. I will be sending my doctor an e-mail today suggesting that the next time I am on treatment holiday ( if there is a next time ) that prior to restarting we base that decision on imaging and not just PSA. Todd

My ADT vacation is over

Yesterday was a full day of Oncology. It started with a blood draw at nine in the morning and then Mandy and I spent the next five hours playing disc golf and going out to lunch. We had a really good day until my appointment at 2:30 with the oncologist. At the appointment I found out that over the last 20 weeks my PSA had increased from .06 to 3.03. Essentially it had been doubling approximately every four weeks. My testosterone level had went from less than 10 to 245 since going off of Zytiga last November.

    To be perfectly honest I completely expected it. There were a few tell tale signs. It had become more difficult to urinate and I would find myself straining a little to void my bladder. Overall my body seemed to be fatigued and achy all over. After my appointment yesterday I received my first Lupron injection in 14 months. This morning I restarted Zytiga.

   Mandy is doing as well as can be expected with the news we got yesterday. She and I both want to believe that by some grace of God or miracle, the cancer would not come back. This morning she was a little off. It breaks my heart what this disease does to her. Sure, we are able to retain a degree of intimacy but it’s not the same. She wants to be wanted and simply being able to make love is just not the same thing.

   For me, yesterday‘s news brings with it a lot of questions. Well maybe not a lot of questions. I just wonder, if my testosterone level had not of jumped right back up into normal range, would the cancer have stayed at bay much longer? I suppose that it’s a question that will have to go unanswered.

    For Mandy and I, it was a pretty incredible year. Having testosterone again, we both appreciated the renewed interest in intimacy. I suppose my only regret is that we didn’t utilize the interest as often as we could have. Unfortunately we both work long days and when we get home we are tired. During my ADT holiday we ventured to the big Island of Hawaii spent time in the mountains, And at various lakes. I will include some photos of our adventures in this post.

    I have no doubt that the combination of ADT and Zytiga will once again put the beast to sleep. Zytiga is a powerful weapon against advanced prostate cancer. I wish I could receive Provenge again. I firmly believe that in my case it is the reason that the Zytiga has worked so well.

    So where do we go from here? My oncologist seems to be on board with intermittent therapy. If that is the case perhaps after the beast goes to sleep I will be able to experience another vacation from treatment. I certainly hope so.

   

13 year anniversary of my DX

  Today is Thursday June 20th. 2 weeks ago today was my 13 year anniversary of my Prostate Cancer diagnosis. I cannot believe how quietly the day slipped by. It is easier now not to think about cancer. It is always in the back of my mind somewhere but it receives very little attention. 

   13 years ago I was a scared younger man facing his mortality. I spent weeks under the big machines and getting poked and prodded by everyone I came into contact with it or so it seemed. 13 years ago every new piece of information painted a picture more dire than the last. So much has changed since that time.

   Today I am off treatment, basically healthy, and optimistic for the future. Today I am blessed with the incredible love of family who are also optimistic for the future. I have a multitude of friends whom I would never have met were it not for this disease.  My life is fuller. I have more confidence and less fear. I have incredibly joy. 

   I have often said that this disease is the single best life altering event I have ever experienced. I stand by that statement. Cancer changed my life for the better. It was a turning point, a doorway if you will, from the man I was to the man I always wanted to be. I don’t think I am completely there yet! I still have a long way to go and so much to learn about who I am. The good news is that somewhere inside of me I still have cancer. It keeps me from becoming selfish and arrogant. It keeps me appreciating all my yesterdays all my today’s and hopeful for all the tomorrow’s yet to come. 

Relax!! It’s not the Cancer.

   My knees hurt. My shoulders hurt. I’m really really tired. All of that is bad enough but a week ago I really started to worry. It was getting harder and harder to to urinate. I was having all thy symptoms of a cancerous prostate. Weak stream, slow starts, and incomplete emptying of my bladder. I was really bummed out. I want this treatment holiday to last and it has only been 7 months.

    I called my Oncologist but he was on vacation. Apparently he had to go see his daughter graduate. I called my primary doctor and got a prescription for flowmax. Mandy played a vital role expediting the process and I had the prescription in my hand a couple hours later. She also played a vital roll as to why the unused prescription is still on my night stand.

   As I was about to take my first pill she said “what a bummer, you will be stuck taking another prescription”

It stopped me in my tracks. There was no reason I needed to start the prescription that day. It could wait. Maybe I needed to do a little research before starting a new medication. I am very glad I took my own advice.

   My shoulders have been hurting so bad that it has been difficult to sleep. I went to the on staff nurse where I work and she gave me an over the counter muscle relaxer and a huge bottle of aleve and instructed me to take 2 before bedtime and 2 in the morning. I had been doing this for about 3 weeks. That is a lot of aleve. I had also been having urinary problems for about 3 weeks. I didn’t put two and two together however until my wife made her comment.

    The next day I started researching over the counter meds and bladder issues. As it turns out, taking Aleve over the recommended dosage can cause urine retention. Doh!!!

   Once I stopped taking the medicine l, my issue subsided. I don’t pee like a third grader anymore like when I was on treatment but I am not a third grader and I still have a Prostate. I am however, able to empty my bladder completely and sleep through the night again without bathroom interruptions of my sleep.

   It’s not always the cancer that causes cancer like symptoms. We should always do a little research before taking another pill. Sometimes we just need to relax. Our thoughts can be our own worst enemy. I may one day have to take flowmax. The cancer may one day come back. There are endless possibilities as to what the future hold but none of those things effect the here and now. If you think about it, today is all we really have. All of those things may one day happen but they will not happen today. Today, I am cancer free.

Return to Masculinity!

  Boy and how. 

Last night I had a sex dream. The night before I had a sex dream. I swear to little baby Jesus it feels like going through puberty again. I tend to have spontaneous arousal at the most inconvenient times. “ Just like in high school”  ( “Mr. Seals, will you come to the front and work this problem out on the blackboard “) “ No thanks, I will take the zero”

   I have hoped for this day for a long time and now that it is here it’s just weird. I forgot what having libido is like. .

   I never received my testosterone results from my last appointment. I can only speculate that they have recovered somewhat. It’s either that, or in my case, a little goes a long way.

   I have been sleeping better but have been requiring less of it. Yesterday I worked 8 hours and then worked 4 hours on my truck.

   Sadly, body hair has not returned. As long as the hair on my head sticks around, I am fine with that. 

   There is hope that a man diagnosed with advanced PCa  can live a fairly normal life. Don’t give up hope. Stay Positive.