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. 

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

My five months update

    I have been off treatment for almost 5 months now. Things seem to be going fairly well but I have noticed a few issues that may or may not be related to stopping treatment.

   I’ve been struggling with mild nausea a couple times a week. I’m not really sick to the point of throwing up but I do tend to get a little bit queasy. I have started taking potassium again and that seems to help so maybe my potassium level is still just a little bit low. I don’t know how true it is but a nutritionalist told me that low potassium is usually a sign that there is something else wrong with your body. Well I took potassium almost the entire time I was on Zytiga because it can affect your potassium levels.

    Another issue I have been having has to do with a really annoying pain in my left arm. It is a subtle throbbing pain that seems to radiate from the vicinity of my elbow and perhaps a few inches both north and south of it. I have been working with a guy that practices A.R.T. And he tells me it has to do with nerve inpingement. I have to be honest, it feels remarkably similar to the bone  pain I felt prior to my initial diagnosis in 2006.

    I have not had a PSA test since January therefore I have no idea what is happening biochemically within my body. I see my oncologist May 6 and I have to have blood work done prior to that. It wouldn’t surprise me if all of these things I have been feeling end up being ghost symptoms that go away as soon as I get my PSA back. I am not nervous about the bloodwork. I usually am but not this time. Perhaps I have reached a place where it no longer matters. It will be interesting to find out how I am doing. I suppose I am more curious than anything else. 

    Before I sign off, I have a question. Have you been satisfied with the quality of care you have received since your journey began? If not, what changes could be made to better serve you as a patient?

That’s all for today, Todd

The Hard Choice

     Today, I am not writing about my journey. I’m not writing about myself in any way. A recent message from the son of a cancer patient opened a hole in my heart. 

   I wrote about my dad‘s death a few years back. What I did not write about was the mistakes that I made in assuming that my outcome with cancer would be his as well. I am ashamed of my arrogance and my ignorance. 

   My dad had been sick for a long time. In hindsight it was easy to see but the changes came about so slow that we didn’t really notice it as it was happening. His prognosis was poor at diagnosis. His doctors recommended palliative care. We pushed him into radiation and chemo none of which was tolerated by him very well. His last months were miserable. We wanted him to live as long as possible. In our selfish shortsightedness we could not see that quality of life trumps quantity every time. 

   As cancer patients, barring miraculous cure, we may one day reach the point in our journey where the benefit of days or weeks of life is not worth the price we are forced to pay. We may arrive at the crossroad where quality meets quantity and we are forced to choose a direction of travel. That decision should be ours and ours alone to make. Although I occasionally have days where I feel like crap, I am personally not there yet. 

   Recently, we were forced to euthanize our Labrador Retriever. He was 16+ years old. We probably should have done it a year ago. He was deaf as a post. He was almost blind. He had a fatty tumor growing on his side.   (Our vet said it didn’t bother him) He hadn’t been a dog for a long time. In the wild he would died years ago. The problem was I couldn’t bring myself to take him in. I didn’t want to say goodbye. It would hurt. It didn’t matter how the dog felt. It mattered how I felt. When he started falling down and losing control of his bladder and bowels I finally mustered the courage to say goodbye. 

   I don’t want to go like that! I don’t want to cling to days or weeks enduring side effects and feeling like crap. When it is time it is time. I hope that day doesn’t come for a long long time but when it does, make me comfortable. Spend time with me, talk to me, let me eat what I want if I am hungry, let me smoke a Marlboro Red if I choose to, let me partake of a little edible Mary Jane, but mostly, just let me be me and say goodbye in my own way. Let me laugh, smile, and cry if I feel the need. I know it is hard for you. Death is always hardest on those who are left behind. I know you will miss me. I will miss y’all too but I believe I will see you again. It will be okay to let me go. Believe me, when that day comes, it will be what I want.

    I guess this post was about my journey afterall.

             Todd

   

    

    

Zometa update

I have been off of Zometa for a year and a half. After meeting with an oral specialist I have learned that I will never be able to have dental work involving bone exposure for the rest of my life. I am a high risk for Osteonecrosisis of the jaw bone. I am sharing what I learned at my appointment hoping that this may help others in the decision process prior to starting Zometa and other bone strengthening treatments.

   It was always my understanding that if I required dental work in the future that I could stop Zometa infusions and then have dental work completed. This is not the case. Zometa has a half life of 10 years! Really!!!! Ten years. It stays in your bones that long. Research has shown that no patient should be on the treatment longer than 2 years. I was on it for 5. If you have 6 or less infusions you are considered to be low risk for necrosis. 6-12 infusions puts you in the moderate risk category. Over 12 infusions you are definitely high risk for necrosis. My jaw shows bone density consistent with high risk for necrosis.    

   I cannot stress the need to ask questions when making treatment decisions. I cannot stress the need for second opinions. We must also be diligent about researching potential treatments. 

   I have no doubt that there will one day be a ton of misinformed former Zometa patients filing a class action lawsuit in the future. I can already picture the T.V. Commercial. Were you or someone you love taking the bone strengthener Zometa? Have you at your loved one experienced negative side affects? Blah blah blah. Please call the Law offices Cheatem and Steal. You may be entitled to

Compensation.

   On a positive note, I can still have root canals and fillings, cleanings, and routine dental work that does not require exposing bone of the jaw. I will take care of what I have left, fill in the gaps with a partial denture, and hope that I do not develope gum disease. I wonder how long it will take for jaw bone replacement to become common place.

 

   In other news, my knee surgery was successful and after a 5 week recovery I am back at work today. Hawaii was a total blast and I found myself checking into real estate on the big island. We finally got the snowmobiles out last weekend and we tore up the mountains. I have decided that my drug of choice is horse power fueled adrenaline. 

   Life is good, live it large. Todd

February Update

   As the month of March begins I have been told that it is time for an update. I had an oncology appointment a couple of weeks ago and it was rather uneventful. There was no blood work as my Liver and Kidney function must no longer be monitored. I had a PSA test a couple of weeks before so my doctor did not feel that was necessary. He poked and prodded a little, listened to my lungs, and said see you in 4 months. I am not complaining. It just seems so weird. I am simply use to monthly blood draws and appointments. I am use to having my doctor talk to me about what we do next after treatment fails. This is a new chapter in the story and it is very chillax. 

   I had knee surgery 4 weeks ago. I am recovering nicely. It was not a replacement procedure, just a little orthoscopic. clean up of the meniscus. As usual, I am rushing recovery. I tried snow shoeing a couple weeks ago and spent the next to two days on the sofa with an ice pack on my knee. 

   Mandy was worried we would not be able to take the vacation we had been planning for months but everything was okay. We left for Hawaii on the 22nd and returned just last night. We had a wonderful time on the big island. Our youngest daughter was able to join us for a few days and it was nice to see her. The house has been quiet without her living at home. .

   I am beginning to notice subtle changes since going off treatment. Nothing rather shattering. My libido is still in the toilet but I have been having morning glory fairly regularly. That is so weird. My urine stream might be a little weaker. It may also be in my head. My PSA is still at an undetectable level which is nice. I won’t have another blood draw until May. It makes it extremely difficult to write a Prostate Cancer Blog when there is nothing to write about.

   It is 4:30 in the morning and I couldn’t sleep. I don’t know why but here I am sitting in my robe surrounded by cats writing this post. I am sun burned/tanned and peeling and feel fantastic. My inability to sleep must have something to do with time changes and jet lag. We went to bed pretty early Hawaiian time so I suppose that might account for my restlessness.

   Anyway, that is all I have for now. Mahalo

First PSA Since vacation began.

Today I will get my blood drawn for CBC, Testosterone, and PSA! It will be my first since stopping treatment 6 weeks ago. I don’t anticipate any changes but I never really know for certain. I am not nervous. I suppose I am a little curious but that is all. I should have the results by the dinner hour.

  I have been grouchy lately. I have also been short tempered and very impatient. I think part of the reason is that I am in a bit of pain due to a tear in my meniscus. I will have surgery on the 7th to correct it. Here’s to hoping for positive numbers.

My Story in Men’s Health Magazine

https://www.menshealth.com/health/a25305425/prostate-cancer-survival-story/

Please read and share.