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!!!!