Wednesday, September 25, 2019

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!!!!

Friday, September 13, 2019

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

Thursday, September 12, 2019

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.















   

Thursday, June 20, 2019

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.

Wednesday, May 22, 2019

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. 

Thursday, May 9, 2019

Month 155

   Month 155 began yesterday. I also had an Oncology appointment yesterday. My PSA came back at 0.06 up from >0.01 six months ago. I still have a Prostate so neither I nor my Oncologist are too concerned about it. I feel pretty good. It is really awesome to have a break from the hormones. Parts of my body are coming back to life. My Libido is still marginal but that too is showing signs of resurrection. All in all, life is pretty good.
    My Doctor is thrilled that I am doing so well. I am thrilled as well. I am still waiting to find out what my Testosterone is up to. I am fairly certain it has come up. 
   It is really hard to believe that almost 13 years have passed since my DX. It has been a crazy wonderful messed up ride. I would not have missed it for anything. 
   Last week I was honored to take part in a Measure Incubater for Advanced Prostate Cancer in our Nations Capital. National Quality Forums invited me to share my story and patient perspective. There are so many people who work tirelessly trying to make life better for cancer patients. It is very inspiring. I was in D.C. less than 24 hours. There was very little time for sight seeing or socializing. I still managed to make new friends. I never have so many friends that I can’t use another.
   The rest of the Month of May will be tough. I will be working long hours, trying to get our truck ready for traveling, and trying to get our house prepped for the water damage to be repaired. I can’t wait for summer to arrive. I need a vacation. Todd