Monday, June 12, 2023

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!

Friday, May 5, 2023

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

Wednesday, November 16, 2022

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 . 

Thursday, November 3, 2022

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 na├»ve.  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.

Wednesday, October 12, 2022

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.

Thursday, September 22, 2022

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.

Wednesday, September 14, 2022

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.