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

Wednesday, April 17, 2019

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

Tuesday, April 9, 2019

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
   
    
    

Monday, March 18, 2019

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

Sunday, March 3, 2019

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

Monday, January 14, 2019

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.