TGIF

No, I am not running out of things to talk about. At least I don't think I am. So far this year has been mundane. I know we are only 3 weeks into the year but last year was such a whirlwind and we got so use to traveling that it seems like we are standing still at the moment. Maybe that is a good thing. 

    I had a bit of a scare tonight. Since starting Zytiga my weight has been dropping off at a steady pace. I actually lost weight on a cruise ship.  The weight loss seems to have stabilized at 150 pounds and over the last couple of weeks I actually put five pounds back on. Tonight when I stepped on the scale it read 144.2. I had lost 8 pounds in a week. As it turns out the battery in the scale was almost dead. After replacing the battery I was pleased to see the number was 153.8. That  made Mandy and I feel a whole lot better. Monday is P.S.A. and pomindranate infusion day. I liked it a lot better when I was only having blood tests every three months. It is just a little too much stress to deal with every single month. My doctor comes in and does a quick once over and listens to my lungs and says see you next month. Sometimes I feel like a number. 

    Over the last three weeks I worked every day but one. My two week check had 164 hours on it. I am really looking forward to having a couple of days off. I will finish the rest of this post tomorrow night. I am going to spend a little time with Mandy and Michaela.

   Saturday:

   Today was a great day. Mandy and I slept in and then after morning coffee went for a walk down by the lake before returning to fix breakfast. After breakfast we went to town for a few things. When we got back we went for an eight mile bike ride. Afterward, I pressure washed the driveway while Mandy and Michaela shot hoops. It was good to just be home. The weather in Washington has been mild and dry. It has really been a strange winter. There is no snow. The snowmobiles are sitting on the trailer ready to go. I hope we get some snow soon. The reservoirs depend on the spring snow melt to fill them up. If we don't get some snow soon there is a good chance that the boat will be in the garage most of the summer. After dinner we went to Michaelas basketball game and then took her and her date to the dance. While they were at the dance, Mandy and I watched 42 the Jackie Roninson story. It was a very relaxing night.  Tomorrow we will kayak on the lake and spend another day relaxing and recharging our batteries. It feels good just to chillax once and a while.  I guess I really got use to my rock star status. It was fun. It was exciting. Now I am just bored.  Maybe I am running out of things to talk about. It would really suck to have to talk about cancer. I am sure I will have something to talk about on Tuesday when my bloodwork comes back. Until then . Todd

  

I need more bullets

   Imagine if you will, I guy out in the wilderness on a hike or what have you. Maybe he is out bird hunting. He has a shotgun and a small caliber side arm and nothing more. On his hunt he encounters a wounded grizzly bear who is hungry and unable to feed himself in the usual way. The bear sees the guy and charges determined to make the guy a meal. The guy knows he is toast but survival instincts tell him to throw everything he can at the bear. He starts shooting and although he hits the bear 5 times with his pistol the bear keeps coming. He has one bullet left and his shotgun.
   The bear in this story is Prostate cancer and I am the guy. The bullets are treatments that will not kill the bear but will slow it down. Sooner or later the bear is going to eat me and I am running out of bullets. Maybe there is more ammo in my backpack but I don't know that.
   I started this journey on Lupron and Casodex. They were my first two bullets and they slowed down the bear considerably. After some time, (18 months ) the Casodex simply quit working and actually enraged the bear. Lupron in and of itself kept the bear at bay for three more years. My next shot was D.E.S. and it stunned the bear momentarily but the bear kept coming. Time for another shot. Provenge stopped the bear for a year and it was an arterial wound. Although the bear is still bleeding, it keeps on charging only now he is not charging so fast. My next shot is Zytiga and it is another good shot. The bear has stopped but for how long. He has backed off a bit and seems to want to rest but he is still standing. He is still there. He is waiting. I have one more bullet in my gun. Xtandi is advertized to be a wonderful drug. My shotgun sits at the ready. It is loaded with Taxotere and Jevtana. Will it stop the bear or simply make it angry. I need more bullets. There are some in my pack but they are unproven. Damn!!!
   I know that I am going to be a meal. I know that with the weapons at hand I cannot kill the bear. It's going to hurt to be eaten alive. It is going to be slow and painful. I am not afraid. I am going to go down fighting. Why did I have to go on this stupid Hike? Is there anyone near me who has a bigger Gun? Damn!!!
   I still have one shot left in my pistol. I don't want to use the shotgun. I am afraid it will only anger the bear and motivate it to finish the job. It will be my weapon of last resort. I must look for the unproven ammunition. Which one might work. There are so many. Each shot buys me time to find another. I must keep shooting. My wife, my children, my grandchildren need me. Stupid Bear!!!
   Next Monday I must go for my monthly blood work to be approved for the next round of Zytiga. For the last 5 months the bear has been walking away from me. The more time that passes the more nervous I get that the stunned bear will once again resume it's charge. Perhaps I worry for no reason. At this point, and judging from my past experience with Androgen Deprivation, there is no reason to believe that the bear will be coming back in the short term but still, he is out there and each day brings me closer to another encounter. I hate the bear. I want him dead. I no longer want to live a month at a time. I want a big gun.
                                                                                  Todd

My Bucket List

   I'm not sure I ever cared for the term "Bucket List". I don't have anything against it but just the idea of having a bunch of stuff on a list that I need or want to do before I die seems morbid. Don't get me wrong, there are many things I want to do and see before the inevitable, but having a list seems to detract from the spontaneity of life. This is just my opinion and I realize that there are multiple viewpoints to every subject but this is my blog and today I feel like writing random thoughts regarding bucket lists.

  I loved the movie " The Bucket List ". Jack and Morgan were wonderful. The interaction between the two characters and the way they came to enhance each other's perspective of life was heart warming. To me, that is the real purpose of a bucket list. The list is not important but rather a means of learning what is really important in life. Jack and Morgan were polar opposites and yet the unlikely friendship took them both to a deeper place. Some people look at the waters and wonder how far. Others look at the same waters and ask how deep. Shouldn't depth be our quest. 

   My earliest memory as a child was the day a 5 year old Todd stepped off the patio to walk over to gramma'a house. About half way there a question came to me. "Who was I before I was me"? It was such a strange and simple question but I was sure I was somebody before. To a 5 year old it was some pretty heavy stuff. I am 50 years old now. It's still some pretty heavy stuff. Where would I be if I wasn't here. Someday I will find out. I realize this has nothing to do with a bucket list and yet it has everything to do with it. Why are we here? It is a question that has been asked since the dawn of time. Where are we going? I would like to ask someone who has been there. I read a book by Richard Bach. He is the same author who wrote Jonathon Livingston Seagull. In the book the main character said we are here for two reasons: To learn and to have fun. Every thing we do can fit into those two categories.  Who knows, maybe it's true.

    My bucket list changes all the time. There are constants of course but the older I get the things that once seemed important to me no longer are. These are the things on my list at this point in my life. I want to see the Seahawks win a Super Bowl. I hope that happens this year.  I want to spend more quality time with my kids and grand kids. I want to walk my daughters down the aisle. I want to dance at my grand children's weddings. I want to lay wrapped up in a blanket with Mandy and watch the aurora borialis dance across the northern sky. I want to sit on a hillside as two bull elk battle for dominance of the herd. I want to witness the fury of nature riding out a hurricane.  I want to halibut fish in Alaska and reel in a big one. I want to go moose hunting. I want to spend a little more time with Mandy on the white sand beaches of someplace beautiful. I would love to snowmobile through Yellowstone National Park and spend Christmas there in a cabin with my entire family. I want to bag a trophy elk. I want to write a book that people actually read. I want to tryout for The Voice and have Blake Shelton turn his chair around. There is so much talent on that show that winning it would be a terrible bet but just to have the opportunity to compete would be amazing. I want to retire and live many years beyond retirement enjoying the life that 35 years of labor provided. I want to see the day we are debt free. I want to leave something good behind for my family. I want to love deeper than I ever have and then love deeper yet. 

    This is my bucket list. These and many others are the things that are important to me today. Some will change but some will not. I am certain to add things to my list. As I re-read this post I must ask the question. Why is it that we wait until we are terminally ill before we cling to the idea of a bucket list. I wish we could grasp the concept prior to something bad happening. Maybe we need to have a living list and go for it every day. Maybe we all should live like we were dying. Wouldn't the world be an amazing place. This author believes it would be. What are your thoughts? 

     Todd

    

   

5:30a.m.

   Crickets from my alarm clock begin their chirping. No, they are not real but the subtle noise wakes me and allows Mandy to continue sleeping. What day is it? Thursday, that's right. Only nine more days until the weekend. I slide out of bed and reach for my robe. My morning ritual has begun. I let the dog out, make the coffee, and head to the bathroom as it brews. After my face is washed and my teeth are brushed I let the dog in, pour a cup of black coffee, and head for my chair next to the fireplace. The fire is still burning so I throw a stick of wood on the coals and in moments it roars to life. Brody is waiting patiently. As I descend into my chair he jumps into my lap. The cat has also noticed me sitting and makes her way over to have her ears scratched for a while. Every day is the same. These precious few minutes as I idle my internal engine and try to come to life are the only time that I am still. My pills wait on the end table. I love them and I hate them. The dog and cat seem content to stay put. Too bad for them. I remove them from my lap and place them on the floor. Sorry guys but I need to start my day. The coffee is good and is a nice contrast to the taste of the 5 pills I am trying to choke down. When the last of my pills are consumed and my coffee cup empty I reluctantly rise from the comfort of my chair. It is 6:05. I fill my thermos, throw my lunch in my pack, and pour a to-go cup for the road. I hastily dress into my dingy work clothes. They are fresh from the wash but you would never know. The dirt is eternal. Time to wake Amanda.

   I awake to an alarm. Mandy wakes to a kiss. She wraps her arms around me. I won't be leaving the bed side anytime soon. :-) five minutes later another kiss goodbye and I head for the door. I put the cats outside on the way to the door, grab my keys, and off to work I go.

  This is my life and it is not taken for granted. I often wonder how much longer it will last. I like to work. I like getting dirty and working with my hands. When first diagnosed I thought of going out on disability. It has been seven and a half years and I am still working hard every day. What will happen if or when the day comes that I can no longer perform my duties at work. Sure, I complain about my job almost daily. When I have to climb into a steam vessel or into some shit hole that is covered with grease and water is raining down on my head I ask myself "what the hell am I doing here"? The truth is, what else would I do? Amanda and I make an okay living. We are far from rich. What happens when I can no longer work and must rely on a disability check? I hope these pills continue to work for a long time. In a few years a couple bills will be paid off. Each year after that we will have two more paid off. I have to work five more years. I have to make sure Mandy is going to be financially okay if my health goes in the toilet.

   This is my struggle. When my nights are sleepless this is what I think about. It is something I must face alone. It is time to go to work.

Androgen deprivation . H/T

   At the time of my diagnosis the only treatment available to me was hormone therapy. A friend of mine who passed away from Pca told me it would only work for six months. That was all the longer that it worked for him. He was diagnosed 2 years prior to me and died 2 years after I received my dx. The treatment worked much better and longer in my case. I did not have to change treatment for five full years. During the course of that time my P.S.A. dropped from over 3200 to less than 0.05. The metastasis in my body was undetectable with a C.T. scan. My doctor said that these were very impressive results. I was thrilled to be doing so well and I began to sleep a little easier at night. The hormones were doing their job and beating back the cancer but with the successful treatment came all of the side effects. The purpose of this blog entry is to list the side effects I experienced and the way that I dealt with them to minimize the effect they had on my quality of life. Hormones effect different men in different ways. The broad range of side effects are not experienced by any two men the same way. With each side effect, humor played a huge role in dealing with it. Faith played an even stronger role in the big picture but learning to laugh at myself was the key component in my day to day struggle. This is not a complete list of side effects. This blog includes only those that I personally dealt with. One thing to remember in any cancer treatment is "attitude is everything". If you think you are beaten, you are!!

   Three days after my first Lupron injection, I had my first hot flash. They grew in both number and intensity over the next few months. At the peak I was having a couple dozen a day lasting 5 minutes or so. I hated them. I did however find empathy for my mom and every other woman over 50 years old. The worst of them came in he night while trying to sleep. Mandy likes to be warm when she sleeps. We learned to co-exist by having a small fan blowing air on my face and I slept covered only by a sheet. The hot flashes were pretty steady for about two years then began to wane as my body adjusted to its new normal. I rarely have hot flashes anymore. 

    Eighteen months into treatment my chest began to feel tender and swollen. I was starting to grow breasts. After several months I made the decision to have them radiated. It was bad enough that I was being pumped full of female hormones every 4 months. There was no way I was going through life with a pair of breasts. After all, what would the guys think? The treatment was easy but I didn't count on the nice little tan that encircled my nipples. Needless to say I kept my shirt on that summer. I wish I had done the radiation sooner. The growth stopped but I will always be a little puffy in that area. I am told it is not noticeable but I know it is there and remain self conscious about it. I am told that I stand a good chance of developing breast cancer in the next ten years. Maybe one day I will be wearing both pink and blue ribbons. I hope not.

   Fatigue is another promonent side effect caused by H/T. Since starting the hormones I would just as soon sit on the couch as do anything. I compare it to a dog who has been neutered and just wants to lay on the porch. Essentially it is the same thing. Hormone therapy is chemical castration. Fortunately I have a very proactive outgoing wife. Mandy was not about to watch me turn into a couch potato. She kept me moving as I worked through the fatigue. We are always doing something on a long list of activities we both enjoy. The list includes hiking, biking, kayaking, snowshoeng, fishing, hunting, skiing, water skiing, snowmobiling, boating, and much much more. We bought a camper a while back so being in the great outdoors is now a year round activity. I couldn't have done this on my own. I wouldn't have done this on my own. I could just as easily have stopped living but Mandy wouldn't let me. At first I whined about it. I told her I was tired and didn't feel like going for a walk or a bike ride but I always felt better afterward. I always felt younger. 

Sometimes I would forget all about cancer. It also helped me combat the battle of the bulge. Weight gain is inevitable on H/T. When I started I weighed in at a lean 145. Prior to starting Zytiga, I tipped the scales at a healthy 170 pounds. I have since lost 20 pounds due to a loss of appetite, but I am now beginning to gain it back again. 

   The most troublesome side effect of H/T is E.D. and the lack of libido. It was no problem for me. I didn't think about sex anymore so E.D. wasn't really an issue. It was a huge issue for my bride and rightly so.  At first my H.M.O. was pretty good about loading me up on Viagra and Cialis but they ended that program and left me on my own to solve the problem. I am not going into great detail about this subject other than to say we were diligent in our endeavors. Although our physical relationship is not as good as either of us would like it to be, we still manage to be together 1 or 2 times a week. I still lack the physical desire so it has become a mental game. I have learned to will myself to be in the mood. Sometimes we need help from E.D. Medication but just as often we don't. We are blessed to be able to continue physical love when so many cannot. 

   So this is it. I have been on hormone therapy of one kind or another for 93 months. It's not what I wanted but it is what I got. I am alive. In the time time that has passed since diagnosis there have been a plethora of new medications come online to combat this cancer. Sometimes I am still afraid. When those times come I fall back on my faith and the verse in psalms given to my on that very first day. It is the promise that I cling to when all else fails. My journey through H/T may never be over until my life is over but because of the hormones I am here to perhaps see the day when they cure this disease. Todd

The challenge of Zytiga

I was prescribed Zytiga nearing 6 months ago. I was hoping to get a longer run out of Provenge but I am comfortable with the knowledge that it is still at work empowering my immune system. I believe I have been on this drug long enough to share my experience with others that may be considering the use of it in their Pca battle. 

   Zytiga for the most part has been an easy ride and to date it has been very effective. My Psa has dropped from 29 to 0.29. It is comforting to know that it is doing as advertised. For the most part I feel pretty good but Zytiga with Prednisone has more side effects then I had expected. The first side effects I dealt with were nausea and headaches. The nausea would start soon after taking my pills and usually lasted until I could eat an hour later. It wasn't severe nausea. I simply had a queasy unsettled feeling in my stomach. The headaches were another matter. Sometimes they would last only an hour or so and other times they would last for days. There were times I would wake to a throbbing headache lasting the entire day. Some were so severe that I wanted to put a gun to my head just to make it stop. Recently the headaches have waned somewhat but I still get the occasional whammer. When I feel one coming on I take two Advil or Tylenol and it usually goes away. If I don't catch it in time it will  last all day. 

    Fatigue is another side effect I have been coping with. There is no other way to say it. I am always tired. It has been getting a little better lately but with my heavy work schedule it is hard to wake up in the morning. 

    Every since starting Zytiga I have steadily lost weigh. I started the treatment weighing in at 170 pounds. I am now down to 150 and the weight is still dropping. I just don't have the appetite I use to have. For example,I use to eat half a large pizza but now I feel full after only a few slices. I am not sure if this is good or bad yet. If my weight stabilizes soon then I won't worry about it. The truth is that I needed to lose a few pounds. If I keep losing weight then we will need to do something. I have also lost muscle mass and that disturbs me more than anything. I don't feel as strong as I use to. I started playing with some small dumb bells but due to the fatigue I find it really hard to be motivated. Mandy keeps me going. We still hike and bike and when summer arrives we will be doing more. 

   The most troubling side effect to date is the fog my brain always seems to be in. A dozen or more times a day I find myself walking into a room and wondering why I was going there. I know I was going there for something. I forget people's names. Not just people I rarely see but friends and co-workers I see every day. It is so frustrating. I write myself notes to keep from forgetting and then forget where I put the notes. 

   E.D. Has been an issue since my diagnosis. My body had adjusted to the low testosterone to a point where E.D. Medicine was no longer needed. Now that I basically have zero testosterone it is hit and miss. I am not complaining. Many men have never regained sexual function so having to use Trimix does not bother me too much. I don't always need it but it does help my confidence. 

   It is not my intention to scare anyone away from Zytiga. It is a very effective drug. I have met men who have been on it for two years. Not all men experience side effects. Some people gain weight. I have always been Atypical. I just want guys to have a better idea of what is going to happen when the start this drug. I didn't have a clue and I have been disturbed by some of the outcome. The bottom line for me however is that I am alive. The cancer is in retreat. The side effects aren't pleaseant but they are tollerable. The hot flashes were really bad for a month but I haven't had one since and I am still on Lupron. I guess there was a couple positives to go along with the negatives. I still believe that Provenge is the best bang for the buck. I realize that some men experience side effects with Provenge but I was not one of them. Zytiga is a good drug but if you have the option, do Provenge first. Fight for it and don't take no for an answer. 

    I have to work a 160 hours during the next two weeks so if I don't  post much to my blog don't worry. I hope 2014 is going good for all of you and I hope for nothing but zeros in your life. Todd

Welcome 2014

Have you ever noticed when things start going good that calamity is just around the corner. It reminds me of the foolish bird who waited too long to fly south for the winter. When he finally decided to leave it was freezing and snowing and as the bird struggled to fly against the storm his wings iced up and he fell to the earth. As the little bird lay on the frozen earth near death a cow walking by took a big old dump on the bird and buried him in bovine fecal matter. Things were grim for the little bird it seemed but the warmth of the manure thawed his wings and he began to feel so good that he jumped up from the manure and began to sing. A cat hunting in the area heard the singing bird and ate him.

This story has thee morals.
1) He who shits on you may not be your enemy
2) He who gets you out of the shit may not be your friend
3) If you are warm and happy in a pile of shit then keep your mouth shut.

2013 was a great year. The first few days of 2014.....not so much

Yesterday Mandy had a flat tire on her her car. I inspected her tires just a few days earlier and made a mental note to add a new set of tires into the budget. I was hoping to get them next month. She had driven only a short distance when the right front tire blew. She was so close to the house and wearing her scrubs she opted to limp it home on the rim. The flat tire was unexpected but it wasn't really a big deal. Her only option for getting to work was to take my truck. Two miles from the house she hit black ice did a 180 on the highway and slammed into the guardrail. Mandy is a cautious driver and was traveling at a low rate of speed but on the ice she had no control. I am so glad she was in the truck and not in her little car. She was completely unharmed. The big heavy tuck absorbed all of the impact as she bent the steel guardrail into a large horse shoe. My truck on the other hand was not so lucky.  We dropped it off at the body shop yesterday. I estimate the damage to be about $3500 dollars of which we will pay a thousand out of our pocket.  

    Upon arriving home from work on Friday, the day of the blown tire and fender bender, I turned on the television only to find that it had also made the journey into the electronics afterworld. The Seahawks are in the playoffs people. Going without a television is not an option. They say that calamities come in threes. I hope we are finished for the year.

    For several months now I have been writing about our many blessings. I, like the little bird, have been standing on my own little pile singing a joyful song at the top of my lungs. We are blessed.! There is no doubt about that but maybe I need to learn to keep my mouth shut. Hey it's only money. We can always make more but it was a bummer to have to take that little piece of plastic out of my wallet when I finally had it paid off.  We bought the best tires available. Mandy has to drive in icy road conditions far too often to purchase economy tires. Television are much cheaper then they were when we bought our last one. We spent the same amaont of money as last time and got a better brand and a much bigger screen. The truck will be home in a week and be fixed good as new. 2014 got off to a rocky start in a material sense but my Psa is down to 0.29. 

   Life is good even when it throws the occasional curve ball.

Thank all of you for reading my blog. Please feel free to share it with anyone you wish. Todd