Thursday, November 30, 2017

It’s always there

   I had an oncology appointment today. It was my first since July. When I was seeing Oncology at Kaiser Permanente, my labs were drawn every month. Since changing insurance companies and moving to Providence Cancer Center in Portland Oregon that is no longer the case. The last time my labs were drawn was July19th. The stress of having a PSA draw every month used to bother me. I always thought it would be great to have the test less often. Now I’m not so sure. Having so much time between tests is great however it can be a double edge sword. On one hand, it’s nice not having to worry about having labs drawn and in some regards being able to forget about cancer for a while but on the other hand with so much time between lab tests, changes can occur on a larger scale. It can be nerve racking. Having lab tests monthly also brought peace of mind. Yes, I always had one day a month that was stressful but it was also monthly confirmation that I was doing well in the fight. 
   Time between visits open the door for the head games I am prone to play with myself. Every little pain or change causes me to wonder if the cancer is returning. Is the cough I have developed signaling the return of lung metastasis? “No dummy, it is the same cough every other person in the Northwest has!” Is the discomfort in the back of my legs caused by a tumor growing? “No, you hiked a mountain yesterday and don’t forget the hundreds of stairs you ascend at work each day!” It never ends! No matter how well I do in the fight there is always those negative voices whispering doubt. 
 



   Oddly enough, I don’t fear the return of cancer. I have many more bullets in the gun to combat this disease albeit many of the ones exhibiting mild to moderate side effects have been used. 
 


I have yet to be on Xtandi or any of the chemotherapies. It is simply a matter of wondering when I will be forced to take the next step. I have now been on Zytiga for 50 months. It is my understanding that I am among a handful of guys who have been on the medication this long. When the drug fails to work at some future date it may bring with it a new set of challenges. Zytiga works by shutting down the adrenal gland. In addition to adrenaline, the gland produces natural steroids and residual testosterone. A friend of mine failed Zytiga after 42 months. His adrenal gland never did start working again. It can be a messy transition.
  My check up went great. Lungs clear, no lymph enlargement, no leg swelling, and other than my red cell count and potassium level being at the low end of the scale, all my blood tests were field goals. Oh,..... My PSA test showed no change. It is still holding steady at less than 0.01. I guess my subconscious mind can rest for another 3 months. Now I can focus on the finer things that winter has to offer.



   To all my friends, family, and those who are kind enough to read my blog, go with God as you understand him to be and have a joyful holiday season. Todd

Wednesday, November 15, 2017

What's new in the life of Todd

Frankly, not much. 
    I get my first colonoscopy next Monday. " looking forward to that!"
     I went on my annual elk hunting trip last week. The elk won. I have never had a more miserable time. 2 years ago I took my son up to camp. He was 30 years old at the time. The group that I hunt with got 2 elk. There are about 8 of us that hunt. My son and I were not even there for the second one. I had to fly to Atlanta so he went home. He and I hunted only 5 of 12 days. When we divided the meat up, my son and I each got 5 packages of steak, a roast, and 9 packages of burger. Apparently that wasn't enough. Last year he hunted by himself. He got nothing. This year he hunted and camped by himself and once again he got skunked. I would have liked to have him stay and hunt with us but he didn't want to. He didn't want to split the meat. The trouble is that although he didn't hunt with us he hunted the various areas that we showed him. He hunted the areas we usually hunt. I learned a long time ago that if someone takes you to their favorite fishing hole or hunting spot, you don't go to those places unless you are with them. I confronted him on his lack of sportsmanship and respect,  ( I could have used better words ) I compared his deeds with a guest whom once invited into your home kicks your dog, drinks your best whiskey, and sleeps with your wife. It was a crude metafore but that's all it was. A simple comparison. It didn't go over well. He won't speak to me and said his "Step Dad " was the parent  who was there for him and not me. He is kind of correct in some ways but in my defense his step dad was full time and I was part time. Life is complicated in blended families. It does make sense though. His Step Dad is a jerk too!
   Yeah, I know..... this has nothing to do with cancer. Well, my blog is not about cancer, it is about Living and sometimes living sucks. 
   I was  a part time dad to 3 of my Kids. I have been a full time dad to my 19 year old Step-Daughter. "God I hate that word" I am only using it for clarification. If you Marry a woman who has children, you are a dad. 
Neither of my sons has anything to do with me. I asked my daughter if I was a bad dad. She said I am a wonderful dad. To clarify I am a wonderful dad now. I missed the mark quite often in my younger days. My 19 year old daughter said the same.
   Two days ago a kid from our small community killed himself. He was gay and had a dad that didn't understand.
   Are we ruining our young men?. Does every generation go through this?  
   I use to think my long term remission was a 2nd chance to make things right with my boys. The way things are going, I better live a long time. 
   I know I made mistakes when I was younger. Why do people always feel the need to revisit the past. Can't we just live for today. 
   I don't know what to do. I tried to apologize but I think he has blocked my number. He also unfriended me! WTH! Is that what it is all about now. Oh no.... I am Unfriended. Whatever.
I think my mood for today is bitter. 
   My daughter comes home from Texas in a couple days. It's going to be a good weekend.
   I hope my son gets over it. He is a smart kid. My other son may never pull his head out of his butt. I shouldn't say never though. After all, I am living proof of miracles.
   

Thursday, August 31, 2017

Packwood Lake

   I have been on vacation again. I had signal but lacked motivation. Vacation equates relaxation. Relax we did. Once again writing was not on the list of priorities. Sometimes it is difficult to find balance. Now that I am back and August is drawing to a close, maybe writing will be more consistent. Time will tell!
   We still have one more weekend left of guaranteed camping and boating. Labor Day Weekend is the unofficial end of summer. Temps are suppose to be in the mid-upper 90's. I wish the heat would go away. My webbed feet are cracking. We didn't have a place to camp over Labor Day until last weekend. There was a cancellation at Riffe Lake just a few minutes before we checked at the registration office. It was an ADA campsite! I told them I do not possess a placard  or ADA designation. They said they didn't care as they know I qualify. I kind of feel weird about it. "Hey, who has the disability in the campsite?" "The guy out there on the lake waterskiing!!"


   Most of you know that Mandy and I live in the Pacific Northwest and spend a great deal of our time in the wilderness enjoying all that our region has to offer. During the summer months most of our time is spent boating and skiing on the many lakes and rivers but occasionally we need a break. Last Thursday that is exactly what we did. 
   65 miles due east of interstate five lies the town of Packwood Washington. Five miles south of town is the trailhead to Packwood Lake. Packwood lake is in the heart of the Goat Rocks Wilderness area and only 7 miles west of the Pacific Crest Trail.
   Several thousand years ago the lake was formed when volcanic activity caused a mountain to slide into a valley damming the creek at the bottom. Mother Nature has done a phenomenal job. It is truly a beautiful place.


The Lake trail is a 9-1/2 mile out and back (4.7 miles each way) beginning at 2800 ft. and has a 600ft elevation rise throughout the first couple miles of the trail. It is rated easy to moderate and is a wonderful day hike. Camping is allowed along the lake shore for those who wish and the lake serves as a terrific stopping off place for those who will continue on to lost lakes or the P.C.T.








We had a really good day. The air was fresh and cool. I sure couldn't complain about the company. You may ask, "what does this have to do with Prostate Cancer?" 
Nothing!!! It has to do with living. Cancer sucks! It may shorten my life. It won't steal my joy. I cannot preach this enough.... "Don't stop living just because you think you might die. Live your life! Find the beautiful places and hang out there. Love with your whole heart. Be an amazing friend. Cancer is a gift. The guy who dies in a car wreck or drops dead from a heart attack never knows what hit him. He never gets the chance to do things differently if needed. The movie "The Bucket List" is a perfect example of what I am trying to say. 

 Somewhere some lucky guy is having a heart attack

It wasn't true in the movie. It is not true for you and I. Maybe there are guys out there who never did anything they regret or wish they could do over. I am not talking to you perfect people. Y'all are too cool for school. For the rest of us though, treasure the gift!

Tuesday, August 1, 2017

The wheels turn slow

   Two weeks ago I saw my Oncologist. At the appointment we discussed genetic testing and a referral was made to the Genetisist at Providence Cancer Center. I am still waiting to be contacted. Sometimes "the waiting is the hardest part" You gotta love Tom Petty! He is the coolest man in Rock and Roll.
   You may ask why Genetic testing? What does it matter? 
  Genetic testing is the future of cancer care. Testing the DNA of tumor cells can determine which therapies are likely to work for a given patient and will ultimately lead to targeted therapies tailored to the individual mechanism of cellular proliferation of cancer cells.
   The idea of being genetically tested came from a visit with Dr. Vogelzang late last year. During the visit he stated that I should be tested for the BRCA mutation. He is of the opinion that the aggressive nature of the cancer and the widespread lymph metastasis could stem from being BRCA positive.
   The idea of genetic testing has really taken off in recent years. The Genome project in breast cancer has yielded many advances in how breast cancer is treated. There is currently a Genome project underway for prostate cancer. I can only speculate that the same thing is happening throughout the broader cancer spectrum. 
  
As research continues to advance, I look forward to the day when patients will no longer be forced to endure side effects of treatments that will not work. Standard diagnosis will include gene mapping as well as imaging. Each patient will receive a detailed treatment plan tailored to the specific genetic make up of the cancer. Spock said it best.... "Facinating" 
   Once I see the geneticist, I will post more information. Right now I have nothing but speculation to share. 
    Thank You for reading
              Todd

P.S. For more information regarding the prostate cancer research (Genome) project, here is their Facebook page



Thursday, July 27, 2017

Thank all of you


Getting older

   My doctor said I had a year to live. That was 11+ years ago. What do you do when you hear those words? You start thinking about all the things you won't get to see or do and in my case you spend your retirement savings. 
Doh!!! 


   I have been throwing money at retirement trying to get caught up. It isn't easy but it is a necessity. It appears I am going to live long enough to retire. I have also lived long enough to experience some of the challenges of aging. Getting old sucks but it does beat the alternative. 
   Tuesday last I developed a rash on my left shoulder blade. I knew what it was immediately. For the two days prior I had chills and mild flu-like symptoms. I have Shingles. ( darn those chicken pox ) On the Monday before, during a routine cleaning, I found out that I am losing gum thickness. I also need a couple of dental implants.
   Every time the weather changes, a few days prior, my left big toe aches to high hell due to arthritis in the joint. I use to think old codgers who claimed stuff like that were senile! I understand now why so many people move to Arizona when they retire! My hearing is not what it use to be (too much rock n roll ), I don't pick up a book (or even a package of taco seasoning for that matter ) without first donning my reading glasses, and when I walk into a room, half the time I cannot remember why. Maybe those old codgers are senile!
   There were many many things I thought about when I was diagnosed. It saddened me that I would never get to celebrate a 50th birthday. December 2, I will be 54. I had just started an apprenticeship a few months before my diagnosis. I was sad that I would not become a journeyman. I have been a journeyman pipefitter for 7-1/2 years and actually completed another apprenticeship in lubrication. I thought about all the places I would never get to see or do. Over the last decade, we have seen and done many of them. 
   I never considered what aging was going to be like. Quite frankly, I didn't think it would happen! Although I am not at an age that most would consider old, I am in no way a spring chicken anymore. I guess I am more of a mid-late summer chicken. Now that maturity (physical that is ) is beginning to set in I believe I will have more things happening to my body to laugh about! 

   


The point of all this is that nobody knows the date and time or the when and where of our demise. Common wisdom says I should have been ashes long ago but here I am. Even if you have been diagnosed with a terminal illness it doesn't mean that the doctors are correct. Human wisdom can be wrong. Live for today, plan for the tomorrow, and above all, take care of your body. It is the only one you have.


Wednesday, July 19, 2017

Month 135

Good morning,
   I know, I haven't written much lately. Quite frankly there's just not a lot to write about. It used to be I would see my oncologist once a month. Seemed I was always having blood work drawn and test results to post. Lately that has not been the case. I last saw my oncologist in January. Until yesterday I had not had a PSA test drawn since that time.
    So far, it has been a pretty incredible summer. We have put almost 40 hours on the new boat. Considering that we are only midway through summer, that is a pretty significant amount of time. Last week we were on vacation. We loaded the camper onto the truck, hooked up the boat, and chased the sun to Prineville reservoir in Central Oregon. Once again, it was just Mandy and I as our daughter is now a full-time student at college and a part-time employee at the local burger joint. 
    We reserved our campsite nine months ago to get the very best campsite available. It was worth it. This was the view from the door of our camper!
 
This photo was taken the first morning of our vacation. We awoke to 75° temperatures at eight in the morning and a lake as smooth as a sheet of glass. It was perfect!
   We spent our days on the water, our evenings gazing at stars, and our nights holding each other close. Thank God for air conditioning. At times it was hard to keep my upcoming Oncology appointment off my mind. I was a little stressed out.
 
 


 
   We got home Saturday last and my anxiety continued to build around my upcoming appointment on Monday the 17th. I was really nervous regarding what changes had taken place. Had my PSA risen? Was the cancer growing? Would I require a change in treatment? So many questions.
    On Monday as the Nurse inserted the I.V.  line into my arm, I was filled with a sense of peace. I knew that no matter what the results were, it would be okay
Yesterday I received my test results. Here is a screen shot of the results of my PSA

 
. As it turns out I had no reason to be worried. After 135 months since my stage IV Prostate cancer Diagnosis, that include 10 years on lupron, 3 years on Casodex, 6 months on D.E.S., Provenge Therapy, and 4 years and counting on Zytiga, my P.S.A. is still holding steady at less than 0.01. Needless to say I am very happy. 
   Many thanks to God, Janssen, Dendreon, Kaiser Permanente,  my many friends and followers, and Providence Cancer Center.