Wow! I can sleep again! It's glorious! I haven't been allowed to sleep like this for months! I've been in my pajamas all weekend, pain free without the use of meds for the first time in a long time, and catching up on my dreams. It's good to dream again. I've actually been off of the pain meds for several days and the feeling of recovery has been growing for even longer than that, but it is only just now starting to "sink in". I've been fearful of disappointment.
The hormone therapy seems to be working just as it should, it has given me my life back. I don't know how long that is going to be, but realistically is there any way of knowing how long any of us have? Yes, I have been given an accelerated time frame in that regard but right now that only serves to strengthen my resolve and inspire me to get back to the business of living, and now that I have been given the ability to do that, through this treatment, I can't wait to get started! I may be living on borrowed time but at least I am living, and I plan on paying it forward instead of back.
I am going to continue to spread the word of my story to any one who will listen with the hope that it will help prevent this cancer from occurring in as many men as possible. Beyond that, I am also looking forward to becoming involved with a charitable organization that not only raises awareness but also helps people like me cover the cost of the hormone treatment. The needles required every three months cost $1400.00 each and the daily pills cost $425.00 for three months worth, over $7000.00 annually. Without a good drug plan that can be a huge hit for a lot of people and if it can do for someone else what it's doing for me than I want to help to make it available to as many people as possible. If I can't find an organization that I can "piggyback" onto, one that does what I see needs doing, then I will start my own, something that I'm familiar with, a charitable annual motorcycle ride.
In the meantime, I'm going back to work (modified duties and schedule, I'm not going to rush it) and begin to rebuild my social life by finding someone to share it with me (modified duties and schedule, I'm not going to rush it).
I will continue to post here, although I'm not sure what I will say. However, I have been told, on occasion, that I can be quite verbose so I'm sure I'll think of something.
Saturday, January 30, 2010
Tuesday, January 26, 2010
Why? vs How?
When someone is diagnosed with a fatal or potentially fatal disease, especially if that person is considered to be "too young for that sort of thing",(which is bullshit, age is irrelevant, I'm proof of that, and many others like me) whether it be something common like cancer or rare like Descending Mediastinitis (my cousin is a survivor of this awful affliction), inevitably the question is asked by victim, friends and Family alike; why? Why, indeed.
Why, is an unfair and frustrating question because it can never be answered with any degree of certainty. The ecclesiastical implications of the question require a certain amount of faith that some people (myself included) just can't muster and in the end there is still no true answer to the question, just a feeling of acceptance towards a situation that we think we have no control over but if we truly had the courage to face the situation on a level that would require us to grasp the reality of it all, we would find that we have more control than we might think. Which is why I think, when faced with something as important as our own mortality, "how" is the better question to pursue.
Why does a 41 year old man get prostate cancer? I don't know. How does it happen, and how could he have prevented it from reaching a stage where it becomes incurable? For that there are some answers, and some is better than none at all.
At first I believed that I had some genetic predisposition for this cancer, which may still be true as evidenced by the age that it chose to present itself to me, but I have done quite a bit of research into this subject and I've discovered some pretty startling things. The one that surprised me the most is the fact that when it comes to prostate cancer the question is not IF it will develop, but WHEN. That is how the human body works, if you're a man and you live long enough that something else doesn't kill you first, you will develop this cancer. For some men it might take a hundred years, for others only forty, but it WILL happen. (How come they don't say THAT in the fucking commercials?) The only variable that separates us is when it will happen, and that is why it is so important to get checked for it on a regular basis!
I know it sounds a little like I'm beating a dead horse here but right now I'm a feeling pissed off! Thus far the hormone therapy is working very well for me, I feel better now than I have for months, almost no pain, I have been sleeping better, I'm even going back to work next week. I feel almost normal. (whatever that is) But for how long? Five, maybe ten years? Maybe not even that long. Because of what? Because I never got checked. As a result of the length of time that my cancer was allowed to grow and the extent of that growth, my Doctors can't even tell me how long I might have! I'm being forced to squeeze an awful lot of life, and living, into a very short period of time and it fucking sucks!
I'm an average working class guy. I love life, it can be a lot of fun. Being working class though can sometimes be an impediment when it comes to the amount of "life" time that I am able to enjoy. Don't get me wrong, I like my job, but even on the really good days I can always think of one or two hundred things that I would rather be doing, so when my free time comes I don't like to think about things like going to see a Doctor, even if I'm not feeling well I prefer to just ride it out while doing something more enjoyable. I would much rather be out cruising the highways on two wheels than be in some sterile room with a man poking me in places of my body that I'm not even comfortable with touching myself. (Maybe if it's a woman...) That attitude can work for a long time, for a lot of people, but at what cost? Sure, we're all gonna die someday but why not try to stick around for as long as possible? We could miss out on some pretty good shit.
Don't let your lifestyle or your fear of a lubricated finger up the wazoo (or your faith in an invisible man to protect from such a fate) prevent you from acting on the advice of others or the feeling in your gut.
Focus on the how and do something about it. Then you won't have to ask why.
Why, is an unfair and frustrating question because it can never be answered with any degree of certainty. The ecclesiastical implications of the question require a certain amount of faith that some people (myself included) just can't muster and in the end there is still no true answer to the question, just a feeling of acceptance towards a situation that we think we have no control over but if we truly had the courage to face the situation on a level that would require us to grasp the reality of it all, we would find that we have more control than we might think. Which is why I think, when faced with something as important as our own mortality, "how" is the better question to pursue.
Why does a 41 year old man get prostate cancer? I don't know. How does it happen, and how could he have prevented it from reaching a stage where it becomes incurable? For that there are some answers, and some is better than none at all.
At first I believed that I had some genetic predisposition for this cancer, which may still be true as evidenced by the age that it chose to present itself to me, but I have done quite a bit of research into this subject and I've discovered some pretty startling things. The one that surprised me the most is the fact that when it comes to prostate cancer the question is not IF it will develop, but WHEN. That is how the human body works, if you're a man and you live long enough that something else doesn't kill you first, you will develop this cancer. For some men it might take a hundred years, for others only forty, but it WILL happen. (How come they don't say THAT in the fucking commercials?) The only variable that separates us is when it will happen, and that is why it is so important to get checked for it on a regular basis!
I know it sounds a little like I'm beating a dead horse here but right now I'm a feeling pissed off! Thus far the hormone therapy is working very well for me, I feel better now than I have for months, almost no pain, I have been sleeping better, I'm even going back to work next week. I feel almost normal. (whatever that is) But for how long? Five, maybe ten years? Maybe not even that long. Because of what? Because I never got checked. As a result of the length of time that my cancer was allowed to grow and the extent of that growth, my Doctors can't even tell me how long I might have! I'm being forced to squeeze an awful lot of life, and living, into a very short period of time and it fucking sucks!
I'm an average working class guy. I love life, it can be a lot of fun. Being working class though can sometimes be an impediment when it comes to the amount of "life" time that I am able to enjoy. Don't get me wrong, I like my job, but even on the really good days I can always think of one or two hundred things that I would rather be doing, so when my free time comes I don't like to think about things like going to see a Doctor, even if I'm not feeling well I prefer to just ride it out while doing something more enjoyable. I would much rather be out cruising the highways on two wheels than be in some sterile room with a man poking me in places of my body that I'm not even comfortable with touching myself. (Maybe if it's a woman...) That attitude can work for a long time, for a lot of people, but at what cost? Sure, we're all gonna die someday but why not try to stick around for as long as possible? We could miss out on some pretty good shit.
Don't let your lifestyle or your fear of a lubricated finger up the wazoo (or your faith in an invisible man to protect from such a fate) prevent you from acting on the advice of others or the feeling in your gut.
Focus on the how and do something about it. Then you won't have to ask why.
Monday, January 25, 2010
Procedures part II
I believe that there is a general consensus among heterosexual men that anal intrusion of any kind is something to be avoided at all costs. There are exceptions to this rule of course, as there are to all things, and to those exceptional men I say this; lucky for you. You shouldn't have as much of a problem in dealing with some of the required tests and preparations involved in order to satisfy the best interest of your continued health. I, however, count myself as one of those men who considers my rectum (damn near killed him) to be a one way street used exclusively as an exit, which makes my adventure somewhat problematic since I have recently learned that, much to my dismay, this is not the case.
That being said, the prostate biopsy, as intrusive as it is, is the most important test to have because it gives the Doctors physical and conclusive evidence as to whether or not cancer exists in your prostate. Without it, its just a guessing game, and you don't want to be guessing. The sooner you can confirm cancer, the sooner you can begin treatment, the longer you will live; it's that simple.
There are some things that you need to do in order to prepare for the blessed event. First, if you happen to be on any medication that has a blood thinner in it you have to stop taking it tens days before the procedure. This is to help prevent excessive bleeding from the prostate after the samples have been taken. After all, it's not like you can put a "band-aid" on it. If, like me, that medication is preventing some kind of pain that you have been going through, well, sorry about your luck kid, you're going to feel some hurt. Then there's antibiotics, three of the LARGEST pills that I have ever seen in my life (holy horse pills batman). These are to prevent infection. One taken the day before, one the morning of and one the following day. You can't eat for twelve hours before and, of course, there is the enema which needs to be done two hours before the surgery. Did I mention the enema?
I've never had an enema, didn't know the first thing about it, and they ask you to do it yourself in the morning. So I buy this thing a couple of days in advance and I'm looking at the instructions for self administration and the recommended positions for best effect and I'm thinking, "how the hell am I gonna do this?" Remember, I was forced off of my meds so at this point I'm half a cripple, simply walking is a chore, and these people want me to lay on my back with my legs in the air, stick a tube up my ass and squeeze a bottle of some oily liquid through it until it's almost gone? I found the prospect...daunting, to say the least. I have to give props to my Brother at this point, who, upon hearing about this, offered to administer it for me. I thanked him kindly but had to respectfully decline his offer. There was no way I was going to make him do that, much, I think, to his relief. The sentiment, however, was much appreciated.
What follows is what many people might consider as being TMI (too much information) but in hindsight I think it was funny so I'm going to share it.
So the day arrives. My appointment was for 8:00am which means I have to try to pull this stunt off at 6:00 in the morning. I hobble into my bathroom, place a towel on the floor which I lay down on and proceed to follow the directions on the box. The part you insert and the bottle are one unit, much like a bottle of glue except the nozzle on top is longer, like a tube. I had to reach around the side of my elevated leg with my right hand so I could squeeze the bottle. It started out well enough, I managed to get the tube inserted but when I tried to squeeze the bottle I found that because of the awkward position I was in I couldn't get enough power behind it to make anything come out, so I reached down between my legs with my other hand in order to assist. That worked and I was able to nearly empty the bottle, as per the instructions, but then a nightmare occurred, I cramped up! I couldn't bring my legs down! So there I was, laying naked on my bathroom floor, legs akimbo, with an empty enema bottle stuck up my ass, unable to move! Quite a predicament. My Father, who was to drive me to my appointment, was waiting for me downstairs. I considered calling him for help but decided that I didn't want to curse him with having to live with the image of me in this rather compromising position for the rest of his life, so, with great effort and a decent amount of pain, I managed to roll sideways and bring myself to all fours thereby allowing me to stretch out the cramp and bringing this rather unpleasant, but humorous in hindsight, endeavor to an end.
Now off to the hospital. Once again I'm lead into the room, this time by two nurses (yeehaw, a threesome, but once again, wrong story). They lay me on my left side, one is explaining the procedure to me and getting me to sign indemnity forms, the other is preparing me for the Doctor by sticking the scope into the area of my body that was formerly used as an exit exclusively but now seems to be getting an awful lot of two way traffic (there's never a cop around when you need one) and getting it lined up for the biopsy. I never actually saw the scope but it felt like it was bigger than the enema tube but smaller than a finger. She was digging around, it brought the sensation of someone playing with a pencil in my ass. The Doctor arrives and begins by giving me freezing in my prostate, much like a dentist's needle. The sensation from the needle traveled through my prostate and right up to the tip of my "wee man", it was a little shocking. I'm not sure how well it worked because I felt everything. The biopsy itself is done by poking with a needle that pops out of the scope and takes small pieces of tissue when it retracts. It sounded and felt like being shocked with an electric BBQ starter, not very painful but certainly not pleasant. He took 14 samples. The whole thing lasted about 15 or 20 minutes.
They told me to anticipate blood in my urine for the next couple of days, and blood in my semen for a couple of weeks. It didn't last that long for either, but it was there.
I've already written about the results. I hope that this story helps to give anyone who may have to go through this some peace of mind. It wasn't as horrible as you may imagine it to be in your head. I'm a total wimp when it comes to stuff like this and I got through it, so if I did it, anybody can.
That being said, the prostate biopsy, as intrusive as it is, is the most important test to have because it gives the Doctors physical and conclusive evidence as to whether or not cancer exists in your prostate. Without it, its just a guessing game, and you don't want to be guessing. The sooner you can confirm cancer, the sooner you can begin treatment, the longer you will live; it's that simple.
There are some things that you need to do in order to prepare for the blessed event. First, if you happen to be on any medication that has a blood thinner in it you have to stop taking it tens days before the procedure. This is to help prevent excessive bleeding from the prostate after the samples have been taken. After all, it's not like you can put a "band-aid" on it. If, like me, that medication is preventing some kind of pain that you have been going through, well, sorry about your luck kid, you're going to feel some hurt. Then there's antibiotics, three of the LARGEST pills that I have ever seen in my life (holy horse pills batman). These are to prevent infection. One taken the day before, one the morning of and one the following day. You can't eat for twelve hours before and, of course, there is the enema which needs to be done two hours before the surgery. Did I mention the enema?
I've never had an enema, didn't know the first thing about it, and they ask you to do it yourself in the morning. So I buy this thing a couple of days in advance and I'm looking at the instructions for self administration and the recommended positions for best effect and I'm thinking, "how the hell am I gonna do this?" Remember, I was forced off of my meds so at this point I'm half a cripple, simply walking is a chore, and these people want me to lay on my back with my legs in the air, stick a tube up my ass and squeeze a bottle of some oily liquid through it until it's almost gone? I found the prospect...daunting, to say the least. I have to give props to my Brother at this point, who, upon hearing about this, offered to administer it for me. I thanked him kindly but had to respectfully decline his offer. There was no way I was going to make him do that, much, I think, to his relief. The sentiment, however, was much appreciated.
What follows is what many people might consider as being TMI (too much information) but in hindsight I think it was funny so I'm going to share it.
So the day arrives. My appointment was for 8:00am which means I have to try to pull this stunt off at 6:00 in the morning. I hobble into my bathroom, place a towel on the floor which I lay down on and proceed to follow the directions on the box. The part you insert and the bottle are one unit, much like a bottle of glue except the nozzle on top is longer, like a tube. I had to reach around the side of my elevated leg with my right hand so I could squeeze the bottle. It started out well enough, I managed to get the tube inserted but when I tried to squeeze the bottle I found that because of the awkward position I was in I couldn't get enough power behind it to make anything come out, so I reached down between my legs with my other hand in order to assist. That worked and I was able to nearly empty the bottle, as per the instructions, but then a nightmare occurred, I cramped up! I couldn't bring my legs down! So there I was, laying naked on my bathroom floor, legs akimbo, with an empty enema bottle stuck up my ass, unable to move! Quite a predicament. My Father, who was to drive me to my appointment, was waiting for me downstairs. I considered calling him for help but decided that I didn't want to curse him with having to live with the image of me in this rather compromising position for the rest of his life, so, with great effort and a decent amount of pain, I managed to roll sideways and bring myself to all fours thereby allowing me to stretch out the cramp and bringing this rather unpleasant, but humorous in hindsight, endeavor to an end.
Now off to the hospital. Once again I'm lead into the room, this time by two nurses (yeehaw, a threesome, but once again, wrong story). They lay me on my left side, one is explaining the procedure to me and getting me to sign indemnity forms, the other is preparing me for the Doctor by sticking the scope into the area of my body that was formerly used as an exit exclusively but now seems to be getting an awful lot of two way traffic (there's never a cop around when you need one) and getting it lined up for the biopsy. I never actually saw the scope but it felt like it was bigger than the enema tube but smaller than a finger. She was digging around, it brought the sensation of someone playing with a pencil in my ass. The Doctor arrives and begins by giving me freezing in my prostate, much like a dentist's needle. The sensation from the needle traveled through my prostate and right up to the tip of my "wee man", it was a little shocking. I'm not sure how well it worked because I felt everything. The biopsy itself is done by poking with a needle that pops out of the scope and takes small pieces of tissue when it retracts. It sounded and felt like being shocked with an electric BBQ starter, not very painful but certainly not pleasant. He took 14 samples. The whole thing lasted about 15 or 20 minutes.
They told me to anticipate blood in my urine for the next couple of days, and blood in my semen for a couple of weeks. It didn't last that long for either, but it was there.
I've already written about the results. I hope that this story helps to give anyone who may have to go through this some peace of mind. It wasn't as horrible as you may imagine it to be in your head. I'm a total wimp when it comes to stuff like this and I got through it, so if I did it, anybody can.
Procedures
It has been suggested to me by the person who inspired me to start this blog, my Muse, if you will, that it could be beneficial to others if I described in greater detail the "ins and outs" (that's a pun, son) of a prostate biopsy as I experienced it, and the cystoscopy as well. Initially I balked at the idea, thinking that if I did that, it might scare men away from wanting to have those tests done. Upon further reflection (and cajoling from said Muse) I realized, no one wants to go through that shit,(<--another pun?) so if I shared my story it might have the opposite effect and make people a little less afraid of it, sort of a, "well, if he can do it, so can I" kinda thing. So...
The purpose of a cystoscopy is to look at your bladder from the inside using a small camera, to see if there are any infections or other abnormalities in the tissue. The only problem is, and I think you see this coming, the only way to get the camera into your bladder is to insert it into your penis through the urethra, your pee-hole! Sounds like a torture technique the Nazis might have used in WWII doesn't it? It would be effective too because if he had asked me before hand to sign a confession instead of doing that procedure, I would have supplied the pen. As it turns out though, it wasn't that bad.
The nurse lead me into the examining room where she asked me lay down on my back, then, as she hovered over me, she started to slowly remove her...whoops, wrong story, sorry... then she left. The Doctor came in and first applied an antiseptic, it looked like iodine, to ensure that there were no unwanted germs going in,(at that juncture, germs were the least of my concerns) then an anesthetic to numb and lubricate the urethra. The numbing effect was short lived for me. It turns out that my urethra is contracted which means the camera wouldn't fit, so he had to run a series of small metal tubes up there first in order to stretch it out and make room. That was...uncomfortable. Once the camera was in there, in order for it to work, he filled my bladder with a solution that's mostly water. It makes you feel like your going to piss all over him but it doesn't happen. Then he starts looking around. I could see my abdomen moving like there was a baby kicking around in there, it was kinda weird, but it didn't hurt. I can't tell you what it looked like to have all that stuff shoved up my willy, metal tubes, camera, water hose, because I stared at the ceiling for most of the time. When I tried to look I got as far as seeing my belly moving around and that was enough, I went right back to the ceiling again. He told me what he was looking at, which I described in an earlier post, pulled it out and it was done. The whole thing took less than ten minutes.
As far as after effects go, there was some blood in my urine for about a day and a half but that was it. See? Nothing to it.
I actually found the prostate biopsy to be more invasive. I'll save that for my next post.
The purpose of a cystoscopy is to look at your bladder from the inside using a small camera, to see if there are any infections or other abnormalities in the tissue. The only problem is, and I think you see this coming, the only way to get the camera into your bladder is to insert it into your penis through the urethra, your pee-hole! Sounds like a torture technique the Nazis might have used in WWII doesn't it? It would be effective too because if he had asked me before hand to sign a confession instead of doing that procedure, I would have supplied the pen. As it turns out though, it wasn't that bad.
The nurse lead me into the examining room where she asked me lay down on my back, then, as she hovered over me, she started to slowly remove her...whoops, wrong story, sorry... then she left. The Doctor came in and first applied an antiseptic, it looked like iodine, to ensure that there were no unwanted germs going in,(at that juncture, germs were the least of my concerns) then an anesthetic to numb and lubricate the urethra. The numbing effect was short lived for me. It turns out that my urethra is contracted which means the camera wouldn't fit, so he had to run a series of small metal tubes up there first in order to stretch it out and make room. That was...uncomfortable. Once the camera was in there, in order for it to work, he filled my bladder with a solution that's mostly water. It makes you feel like your going to piss all over him but it doesn't happen. Then he starts looking around. I could see my abdomen moving like there was a baby kicking around in there, it was kinda weird, but it didn't hurt. I can't tell you what it looked like to have all that stuff shoved up my willy, metal tubes, camera, water hose, because I stared at the ceiling for most of the time. When I tried to look I got as far as seeing my belly moving around and that was enough, I went right back to the ceiling again. He told me what he was looking at, which I described in an earlier post, pulled it out and it was done. The whole thing took less than ten minutes.
As far as after effects go, there was some blood in my urine for about a day and a half but that was it. See? Nothing to it.
I actually found the prostate biopsy to be more invasive. I'll save that for my next post.
Sunday, January 24, 2010
Midnight madness
Something is definitely happening to my body, I believe as a direct result of the hormone therapy. I'm not quite sure how to explain it succinctly, but since it woke me up tonight and this is my outlet now, I'm going to give it a shot. And if this bores you, hey, you don't have to read it.
It appears that the hormone therapy is causing my body, or the symptoms associated with the cancer, to go backwards, kind of like rewinding a movie. Over the months leading up to my diagnosis I went through different progressive "stages", in regards to the pain, bladder function, appetite and just overall feeling of strength and wellness. In other words, as the cancer grew, it affected my body in different ways. Kind of like when you get the flu or a bad cold, it starts with a sneeze and a tickle in the back of your throat, then your sinuses get clogged and maybe coughing starts, your throat starts burning, sometimes a fever comes and then there you are, sick. I think it's safe to say at this point that December was my rock bottom, or my "there you are sick" stage. It was, as I described in an earlier post, my Hell month. As bad as it was, none of the stages leading up to that point were very much fun, and one of the worst ones, which I last experienced previous to Hell month, the one that included consistent nighttime sciatic "attacks", the one that lead me to consider suicide, was the one that I believe I have regressed into now.
For several weeks one of my stages went something like this: wake up with a dull pain in my right leg, sort of an "echo" from the night before, go through my day feeling fairly good, come home, lay down to get some sleep, still feeling the "echo", sometimes (like tonight) even fall asleep for 20-30 minutes and then, PAIN! Excruciating, indescribable, unstoppable, fucking sciatic pain in my right leg! Impossible to sleep through! It felt like someone was sticking a knife into my ass, cutting all the way down my leg, the wound healing itself behind the blade as the cut is made, and then turning around and coming back up, and then back down, over and over and OVER!! There was no relief, no position that I could lay in that was comfortable. I would walk around my house, often in tears, doing "laps", thinking maybe I could stretch it out or possibly make myself so tired that exhaustion would over-ride the pain and I could finally get some sleep. It never worked. This would go on for hours, usually until around 5:00am. Then, miraculously, it would begin to subside, allowing me to finally fall asleep, just in time for my alarm to go off at 6:00am so I could wake up, go to work, and start the cycle all over again.
I cannot think of an adjective powerful enough to describe how this made me feel, I don't think one exists in the English language. Frustration squared, to the tenth power!?! Why always at night? On consecutive nights? Why was I not allowed to sleep? I wanted to die, just so I could get some sleep. But ultimately, I knew that death was not an option, so I persevered.
I have never experienced exhaustion like I did in those days. Looking back in my diary I see where there were blocks of time when I would go for as long as 36 hours without any sleep at all which would end with a night of 5 or 6 hours of broken sleep (because remember, I was still pissing every hour or two, which, actually, was a "stage" of it's own that I will write about another time) only to be followed by another 24 hours of no sleep, and so on. In retrospect, I don't know how I got through it. I think the only thing that saved me was Sat. and Sun. mornings because I didn't have to get up for work which allowed me to get some sleep during that window in the morning after the pain subsided. Also, I think it could be a testament to the strength of the human spirit and what we are capable of doing when it's necessary.
Anyway, I believe that I'm back to that stage right now, but there is a difference this time. The pain is not as pronounced as it was before, it's still strong enough to keep me awake, but I'm not pacing around my house crying for sleep. The fact that I don't have to get up at six and go to work also helps, it lets me get my sleep in the morning after the pain goes away, but even beyond that, it's just...different. It's like a healing pain, if that makes any sense, I just feel like it's going to get better instead of worse this time around. There's a light at the end of the tunnel and I'm walking towards it instead of looking at it over my shoulder.
So here I am, typing instead of writing in a book, but now I'm doing it with a positive, optimistic outlook because I see this pain as a regression rather than a progression, and that's a good thing.
It appears that the hormone therapy is causing my body, or the symptoms associated with the cancer, to go backwards, kind of like rewinding a movie. Over the months leading up to my diagnosis I went through different progressive "stages", in regards to the pain, bladder function, appetite and just overall feeling of strength and wellness. In other words, as the cancer grew, it affected my body in different ways. Kind of like when you get the flu or a bad cold, it starts with a sneeze and a tickle in the back of your throat, then your sinuses get clogged and maybe coughing starts, your throat starts burning, sometimes a fever comes and then there you are, sick. I think it's safe to say at this point that December was my rock bottom, or my "there you are sick" stage. It was, as I described in an earlier post, my Hell month. As bad as it was, none of the stages leading up to that point were very much fun, and one of the worst ones, which I last experienced previous to Hell month, the one that included consistent nighttime sciatic "attacks", the one that lead me to consider suicide, was the one that I believe I have regressed into now.
For several weeks one of my stages went something like this: wake up with a dull pain in my right leg, sort of an "echo" from the night before, go through my day feeling fairly good, come home, lay down to get some sleep, still feeling the "echo", sometimes (like tonight) even fall asleep for 20-30 minutes and then, PAIN! Excruciating, indescribable, unstoppable, fucking sciatic pain in my right leg! Impossible to sleep through! It felt like someone was sticking a knife into my ass, cutting all the way down my leg, the wound healing itself behind the blade as the cut is made, and then turning around and coming back up, and then back down, over and over and OVER!! There was no relief, no position that I could lay in that was comfortable. I would walk around my house, often in tears, doing "laps", thinking maybe I could stretch it out or possibly make myself so tired that exhaustion would over-ride the pain and I could finally get some sleep. It never worked. This would go on for hours, usually until around 5:00am. Then, miraculously, it would begin to subside, allowing me to finally fall asleep, just in time for my alarm to go off at 6:00am so I could wake up, go to work, and start the cycle all over again.
I cannot think of an adjective powerful enough to describe how this made me feel, I don't think one exists in the English language. Frustration squared, to the tenth power!?! Why always at night? On consecutive nights? Why was I not allowed to sleep? I wanted to die, just so I could get some sleep. But ultimately, I knew that death was not an option, so I persevered.
I have never experienced exhaustion like I did in those days. Looking back in my diary I see where there were blocks of time when I would go for as long as 36 hours without any sleep at all which would end with a night of 5 or 6 hours of broken sleep (because remember, I was still pissing every hour or two, which, actually, was a "stage" of it's own that I will write about another time) only to be followed by another 24 hours of no sleep, and so on. In retrospect, I don't know how I got through it. I think the only thing that saved me was Sat. and Sun. mornings because I didn't have to get up for work which allowed me to get some sleep during that window in the morning after the pain subsided. Also, I think it could be a testament to the strength of the human spirit and what we are capable of doing when it's necessary.
Anyway, I believe that I'm back to that stage right now, but there is a difference this time. The pain is not as pronounced as it was before, it's still strong enough to keep me awake, but I'm not pacing around my house crying for sleep. The fact that I don't have to get up at six and go to work also helps, it lets me get my sleep in the morning after the pain goes away, but even beyond that, it's just...different. It's like a healing pain, if that makes any sense, I just feel like it's going to get better instead of worse this time around. There's a light at the end of the tunnel and I'm walking towards it instead of looking at it over my shoulder.
So here I am, typing instead of writing in a book, but now I'm doing it with a positive, optimistic outlook because I see this pain as a regression rather than a progression, and that's a good thing.
Wednesday, January 20, 2010
So, what now?
It's a funny thing, staring your mortality in the face.
Actually, I am currently stuck between a state of shock and a state of denial. Which means I haven't had that staring contest yet. I have cried, once or twice alone, but more often it's because the person I'm talking to starts first, and then I lose control with them.
I keep waiting for...something, I'm not sure what. Fear? Despair? Hopelessness? I don't know. I haven't felt any of those things to any great degree, yet. In fact, it's almost the exact opposite, as if I've already come to terms with it, but I'm sure that I haven't. I mean, shouldn't I be making plans? Getting out there and doing all the stuff that I've always wanted to do but keep putting off? I think so, but I just don't feel inspired in that way, and that concerns me a little bit. Is that denial, or is it despair in disguise? Have I given up? Am I just sitting around waiting to die? I don't feel that way either.
Maybe it has something to do with the fact that I am currently overwhelmed with a broken heart. I sacrificed a relationship with a woman for whom I cared very deeply on the alter of "you deserve more than to have to suffer through this with me, just to watch me die" altruism, and the sense of loss that I'm going through because of that is very strong right now. I believe that I am feeling more over that loss than I am over the fact that my life has been cut short on me. I think a large part of that feeling is the disappointment in the fact that she actually accepted my offer, without protest. As much as I do want to spare her the hardship of all of this, I guess I was hoping that she would want to stick by me regardless, at least in some capacity. I suppose it's not fair of me to think bad of her for her decision, after all, I did present her with the choice and should not have done so if I wasn't prepared for her to go in that direction, but still, I can't help but feel more than a little hurt by it. I thought I meant more to her than that, but I guess I was wrong. I don't know, maybe I'm just being selfish.
Perhaps once I get over that loss I'll be more open to dealing with my own situation on a deeper level than I am right now. Until then all I can do is try to mend my broken heart and not be too distracted by it, focus more on the people who are sticking with me and less on the ones who choose not to.
Actually, I am currently stuck between a state of shock and a state of denial. Which means I haven't had that staring contest yet. I have cried, once or twice alone, but more often it's because the person I'm talking to starts first, and then I lose control with them.
I keep waiting for...something, I'm not sure what. Fear? Despair? Hopelessness? I don't know. I haven't felt any of those things to any great degree, yet. In fact, it's almost the exact opposite, as if I've already come to terms with it, but I'm sure that I haven't. I mean, shouldn't I be making plans? Getting out there and doing all the stuff that I've always wanted to do but keep putting off? I think so, but I just don't feel inspired in that way, and that concerns me a little bit. Is that denial, or is it despair in disguise? Have I given up? Am I just sitting around waiting to die? I don't feel that way either.
Maybe it has something to do with the fact that I am currently overwhelmed with a broken heart. I sacrificed a relationship with a woman for whom I cared very deeply on the alter of "you deserve more than to have to suffer through this with me, just to watch me die" altruism, and the sense of loss that I'm going through because of that is very strong right now. I believe that I am feeling more over that loss than I am over the fact that my life has been cut short on me. I think a large part of that feeling is the disappointment in the fact that she actually accepted my offer, without protest. As much as I do want to spare her the hardship of all of this, I guess I was hoping that she would want to stick by me regardless, at least in some capacity. I suppose it's not fair of me to think bad of her for her decision, after all, I did present her with the choice and should not have done so if I wasn't prepared for her to go in that direction, but still, I can't help but feel more than a little hurt by it. I thought I meant more to her than that, but I guess I was wrong. I don't know, maybe I'm just being selfish.
Perhaps once I get over that loss I'll be more open to dealing with my own situation on a deeper level than I am right now. Until then all I can do is try to mend my broken heart and not be too distracted by it, focus more on the people who are sticking with me and less on the ones who choose not to.
Discovery part II
This is where I start to learn just how bad things actually are.
The cystoscopy reveals that my urethra is contracted, which effects my urine flow. He measures it by having me urinate into a flowmeter which shows that my flow is around 25% of what it should be. The examination itself shows that I have the bladder of a 70 year old man. The muscles lining the wall of my bladder are very thick and over worked as a result of overuse and the strain involved in the action itself. At this stage I had been going almost every hour, 24/7, (sleep? HA!) for a couple of months. He gave me some meds that were supposed to help with the flow (their effect was minimal) and reminded me of how I would need to prep for the biopsy on December 30 and that he would see me on January 14 with the results.
Then the results of my P.S.A. test came in on December 4.
An average reading for a healthy male is between 1 and 3.5 nanograms per milliliter. If that number is anything over 6 it is considered to be concerning and warrant further testing. My result was 164! Needless to say, he was concerned. He immediately started pulling strings to have my biopsy rescheduled to the earliest possible date, which turned out to be December 16. This is where things started going south for me even faster.
I haven't talked about the pain too much up to this point, I have entry after entry in my diary describing it, I will try to sum it up here. It gave me suicidal thoughts on more than one occasion, mostly the sciatic pain. It was virtually uncontrollable, but, I was taking naproxen (an anti-inflammatory) which allowed me to have some nights where the pain was almost bearable but without it there would be no respite at all. In order to prevent excessive bleeding of my prostate from the biopsy I had to stop taking the naproxen for ten days prior to it. Naproxen is a blood thinner. Until this point I had been functioning as normally as I could as far as working and tending to my everyday responsibilities and social life. It wasn't easy, I never slept for more than two consecutive hours because of either the pain or the bathroom breaks, and that medication helped enough that I could be mobile, I walked with a limp, but I could walk. Going off the naproxen changed that. I was confined to my bed for a little over a week. I couldn't stand up straight and could not use my right leg at all. I had to use a chair like a walker whenever I had to go to the bathroom, which I was still doing just about every hour. The month of December was pretty much a living hell for me. My life essentially came to a stop. I have been off work since December 14/09.
On December 16 the biopsy is done and I get the results on December 24. Merry Christmas. Cancer is now confirmed. At this point he classifies me as having stage T2a prostate cancer, with a Gleason grade of 8, which is very high for stage T2, especially with a P.S.A count of 164. So, another round of tests, ct scan, bone scan, x-ray and more blood, to determine if the cancer is still confined to my prostate or if it has spread. Again, I credit him for his expediency in regards to getting these tests completed. Under normal circumstances it would have taken several weeks to get them done. He pulled some strings and had them all scheduled and completed over a four day period the following week.
On January 5 he informs me of the results and tells me that what I have is the most aggressive and highest risk prostate cancer that there is, my only option is hormone therapy.
This pretty much brings me to where I started with my second post on this blog. I've covered the story from the medical stand point as comprehensively as I could. I will probably start writing about how it has changed my life and where I plan, or hope, to go from here. Not that I think anyone really cares, just for my own therapeutic purposes.
The cystoscopy reveals that my urethra is contracted, which effects my urine flow. He measures it by having me urinate into a flowmeter which shows that my flow is around 25% of what it should be. The examination itself shows that I have the bladder of a 70 year old man. The muscles lining the wall of my bladder are very thick and over worked as a result of overuse and the strain involved in the action itself. At this stage I had been going almost every hour, 24/7, (sleep? HA!) for a couple of months. He gave me some meds that were supposed to help with the flow (their effect was minimal) and reminded me of how I would need to prep for the biopsy on December 30 and that he would see me on January 14 with the results.
Then the results of my P.S.A. test came in on December 4.
An average reading for a healthy male is between 1 and 3.5 nanograms per milliliter. If that number is anything over 6 it is considered to be concerning and warrant further testing. My result was 164! Needless to say, he was concerned. He immediately started pulling strings to have my biopsy rescheduled to the earliest possible date, which turned out to be December 16. This is where things started going south for me even faster.
I haven't talked about the pain too much up to this point, I have entry after entry in my diary describing it, I will try to sum it up here. It gave me suicidal thoughts on more than one occasion, mostly the sciatic pain. It was virtually uncontrollable, but, I was taking naproxen (an anti-inflammatory) which allowed me to have some nights where the pain was almost bearable but without it there would be no respite at all. In order to prevent excessive bleeding of my prostate from the biopsy I had to stop taking the naproxen for ten days prior to it. Naproxen is a blood thinner. Until this point I had been functioning as normally as I could as far as working and tending to my everyday responsibilities and social life. It wasn't easy, I never slept for more than two consecutive hours because of either the pain or the bathroom breaks, and that medication helped enough that I could be mobile, I walked with a limp, but I could walk. Going off the naproxen changed that. I was confined to my bed for a little over a week. I couldn't stand up straight and could not use my right leg at all. I had to use a chair like a walker whenever I had to go to the bathroom, which I was still doing just about every hour. The month of December was pretty much a living hell for me. My life essentially came to a stop. I have been off work since December 14/09.
On December 16 the biopsy is done and I get the results on December 24. Merry Christmas. Cancer is now confirmed. At this point he classifies me as having stage T2a prostate cancer, with a Gleason grade of 8, which is very high for stage T2, especially with a P.S.A count of 164. So, another round of tests, ct scan, bone scan, x-ray and more blood, to determine if the cancer is still confined to my prostate or if it has spread. Again, I credit him for his expediency in regards to getting these tests completed. Under normal circumstances it would have taken several weeks to get them done. He pulled some strings and had them all scheduled and completed over a four day period the following week.
On January 5 he informs me of the results and tells me that what I have is the most aggressive and highest risk prostate cancer that there is, my only option is hormone therapy.
This pretty much brings me to where I started with my second post on this blog. I've covered the story from the medical stand point as comprehensively as I could. I will probably start writing about how it has changed my life and where I plan, or hope, to go from here. Not that I think anyone really cares, just for my own therapeutic purposes.
Discovery
So, where or when, did it all begin for me?
To be honest, I'm not 100% positive. I seem to recall being 37 or 38 when I first noticed that I was urinating more frequently, but I didn't think much of it at the time. The change was so gradual that I hardly noticed it at all. Around 39/40 is when the pain started. Lower back pain at first, nothing I hadn't experienced before, just more frequent, and then sciatic pain. Again, infrequent and gradual in it's intensity. I just chalked it up to turning 40 and tried to adjust my lifestyle accordingly, hoping to "cure myself" of it.
It became problematic enough by March of 09 that I finally broke down and went to see my Doctor for a physical. I was long overdue anyway, and I had promised myself that I was going to get the "finger swoop up the shoot" in my 40th year, which I was 7 months into at that point, so, off I went.
My Doctor found that my prostate was enlarged, but, because of my age and good physical appearance (some say I'm a handsome devil lol) he concluded that I was probably suffering from prostatitis, an infection of the prostate, and prescribed an antibiotic, hoping it would clear it up. He did this twice more over the next few months with different antibiotics, none of which had any effect, so the pain and discomfort worsened. Also during this time he had me x-rayed and ct-scanned, discovering some problems with my back. He recommended physiotherapy, which I began on November 17/09. The physio did, and continues to, help with what I believe is an underlying back problem. It was also at this time that he referred me to a urologist.
While this was going on, the urinating became more frequent, and painful, and the back pain/sciatic "attacks" almost constant. Back pain during the day, sciatic pain at night. Sleep became almost impossible. My urologist appointment was set for December 10, I called him one night at 3:00am, practically in tears and left a message begging him to please try and get me in earlier. His office returned my call saying the best they could do was December 1st. Better than nothing I guess. To his credit, when that day finally came, things started moving very quickly.
On that day, after a very thorough and uncomfortable D.R.E., the urologist found what he described as a "nodule" on the left side of my prostate. Immediately he ordered a P.S.A. test, booked me for a cystoscopy for the following week and scheduled me for a prostate biopsy on December 30. Due to a cancellation he was able to do the cystoscopy the following day.
To be honest, I'm not 100% positive. I seem to recall being 37 or 38 when I first noticed that I was urinating more frequently, but I didn't think much of it at the time. The change was so gradual that I hardly noticed it at all. Around 39/40 is when the pain started. Lower back pain at first, nothing I hadn't experienced before, just more frequent, and then sciatic pain. Again, infrequent and gradual in it's intensity. I just chalked it up to turning 40 and tried to adjust my lifestyle accordingly, hoping to "cure myself" of it.
It became problematic enough by March of 09 that I finally broke down and went to see my Doctor for a physical. I was long overdue anyway, and I had promised myself that I was going to get the "finger swoop up the shoot" in my 40th year, which I was 7 months into at that point, so, off I went.
My Doctor found that my prostate was enlarged, but, because of my age and good physical appearance (some say I'm a handsome devil lol) he concluded that I was probably suffering from prostatitis, an infection of the prostate, and prescribed an antibiotic, hoping it would clear it up. He did this twice more over the next few months with different antibiotics, none of which had any effect, so the pain and discomfort worsened. Also during this time he had me x-rayed and ct-scanned, discovering some problems with my back. He recommended physiotherapy, which I began on November 17/09. The physio did, and continues to, help with what I believe is an underlying back problem. It was also at this time that he referred me to a urologist.
While this was going on, the urinating became more frequent, and painful, and the back pain/sciatic "attacks" almost constant. Back pain during the day, sciatic pain at night. Sleep became almost impossible. My urologist appointment was set for December 10, I called him one night at 3:00am, practically in tears and left a message begging him to please try and get me in earlier. His office returned my call saying the best they could do was December 1st. Better than nothing I guess. To his credit, when that day finally came, things started moving very quickly.
On that day, after a very thorough and uncomfortable D.R.E., the urologist found what he described as a "nodule" on the left side of my prostate. Immediately he ordered a P.S.A. test, booked me for a cystoscopy for the following week and scheduled me for a prostate biopsy on December 30. Due to a cancellation he was able to do the cystoscopy the following day.
So, to begin with, I guess
Greetings and salutations.
I had originally intended for this blog to be a place that I could direct people to when they wanted get updates on my situation and/or some back story as to how it all went down. As I begin this though, I see it as being a little more than that. I see it as being sort of like an open letter to my friends and family. Since conversations involving subject matter such as this can be awkward and uncomfortable for some people, I feel this medium is a pretty good way of sharing this information with anyone who is interested in knowing about it.
That being said, if you know me, know this: I am neither ashamed nor am I afraid to discuss my "condition" at any time or in any place. If you see me and you are curious, or maybe you have some advice, or maybe even a joke, please, do not hesitate to bring it up! Do not be "politically correct" around me, I can't stand that shit. Don't treat me like like I'm dying of cancer or something.(HaHa)
This post is intended to give you sort of a general overview of the way things stand right now, the results of all the tests and how we (my doctors and I) are treating it. I'll be getting into more of the minutia of events as they occurred in subsequent posts, and then from there, back to "present day". Feel free to be incredibly bored by it, it's just me blowing off steam.
I am forty one, and I have been diagnosed with prostate cancer. I felt symptoms for possibly 2 years previous to my diagnosis and did nothing. As a result of that "waiting time" the cancer was able to metastasize, or spread, to other parts of my body. My lower spine, my femurs (both legs), my right knee, my lymph nodes, my left shoulder and my left eye, making it impossible to cure.
Hence the warning in my "first things first" post.
It's too late for a cure but there is a treatment, which, if successful, will add years to my life. We don't know how many years (I don't think the federal government needs to worry about me collecting a pension from them lol) but years are better than months.
The treatment is called Hormone Therapy. It consists of a pill taken everyday and a needle into my stomach every three months. The purpose of this medication is to block testosterone production in my body, testosterone being the "fuel" for the cancer. Without fuel, the cancer goes into a dormant state and recedes slightly, it is still there but it can't grow any further. I will be getting a P.S.A. test every three months to monitor how effective the medication is. Ideally, that number should go down to zero and stay there. There are no guarantees that this will work, and even if it does, no way of knowing for how long. In the end, the cancer always wins.
There are side effects, of which I have had the good fortune, thus far, to not have experienced, as of yet, but I've only been on the pills for 2 weeks and just had my first shot yesterday (Jan. 18/10) so, unless I'm super lucky, I guess I can expect them to come at any time.
Some of them are more noticeable over the long term, weak bones and muscles, fatigue, weight fluctuations. Others are more immediate, hot flashes, loss of libido, erectile dysfunction. The E.D. concerns me a little bit but I'm told that Viagara and other related meds can help to solve that. In the here and now it's no big deal, as I am alone, but it's nice to know that if I need it in the future, I have options.
I have noticed a definite improvement in my physical condition as a result of the hormone therapy, a positive sign that it's actually doing what it's supposed to do. I am hoping and planning to be back to work and into my routine, albeit somewhat modified, within the next few weeks.
I have a diary that I've been keeping since November 17/09 which chronicles the path that I have been traveling in some detail, the pain that I've been going through both physical and emotional, the tests and procedures used to determine my condition, etc. My next few posts will tell my story based on those entries and whatever memories revisiting those days conjures up.
I had originally intended for this blog to be a place that I could direct people to when they wanted get updates on my situation and/or some back story as to how it all went down. As I begin this though, I see it as being a little more than that. I see it as being sort of like an open letter to my friends and family. Since conversations involving subject matter such as this can be awkward and uncomfortable for some people, I feel this medium is a pretty good way of sharing this information with anyone who is interested in knowing about it.
That being said, if you know me, know this: I am neither ashamed nor am I afraid to discuss my "condition" at any time or in any place. If you see me and you are curious, or maybe you have some advice, or maybe even a joke, please, do not hesitate to bring it up! Do not be "politically correct" around me, I can't stand that shit. Don't treat me like like I'm dying of cancer or something.(HaHa)
This post is intended to give you sort of a general overview of the way things stand right now, the results of all the tests and how we (my doctors and I) are treating it. I'll be getting into more of the minutia of events as they occurred in subsequent posts, and then from there, back to "present day". Feel free to be incredibly bored by it, it's just me blowing off steam.
I am forty one, and I have been diagnosed with prostate cancer. I felt symptoms for possibly 2 years previous to my diagnosis and did nothing. As a result of that "waiting time" the cancer was able to metastasize, or spread, to other parts of my body. My lower spine, my femurs (both legs), my right knee, my lymph nodes, my left shoulder and my left eye, making it impossible to cure.
Hence the warning in my "first things first" post.
It's too late for a cure but there is a treatment, which, if successful, will add years to my life. We don't know how many years (I don't think the federal government needs to worry about me collecting a pension from them lol) but years are better than months.
The treatment is called Hormone Therapy. It consists of a pill taken everyday and a needle into my stomach every three months. The purpose of this medication is to block testosterone production in my body, testosterone being the "fuel" for the cancer. Without fuel, the cancer goes into a dormant state and recedes slightly, it is still there but it can't grow any further. I will be getting a P.S.A. test every three months to monitor how effective the medication is. Ideally, that number should go down to zero and stay there. There are no guarantees that this will work, and even if it does, no way of knowing for how long. In the end, the cancer always wins.
There are side effects, of which I have had the good fortune, thus far, to not have experienced, as of yet, but I've only been on the pills for 2 weeks and just had my first shot yesterday (Jan. 18/10) so, unless I'm super lucky, I guess I can expect them to come at any time.
Some of them are more noticeable over the long term, weak bones and muscles, fatigue, weight fluctuations. Others are more immediate, hot flashes, loss of libido, erectile dysfunction. The E.D. concerns me a little bit but I'm told that Viagara and other related meds can help to solve that. In the here and now it's no big deal, as I am alone, but it's nice to know that if I need it in the future, I have options.
I have noticed a definite improvement in my physical condition as a result of the hormone therapy, a positive sign that it's actually doing what it's supposed to do. I am hoping and planning to be back to work and into my routine, albeit somewhat modified, within the next few weeks.
I have a diary that I've been keeping since November 17/09 which chronicles the path that I have been traveling in some detail, the pain that I've been going through both physical and emotional, the tests and procedures used to determine my condition, etc. My next few posts will tell my story based on those entries and whatever memories revisiting those days conjures up.
First things first.
If you are a man, over 35yrs old reading this and you suspect in even the smallest way that something is not quite right with you, whether it's more frequent urination, constant pain in your lower back, or just a general feeling of swelling in your backside, do yourself and your family a favor and see your Doctor, NOW!
In fact, never mind all of that. If the only criteria in the above statement that resembles you is your age, 35+, you should get checked. If there is anyone in your family who has been diagnosed with any form of cancer at all, you need to be checked. I cannot stress this enough. It can only be stopped if it's caught early and it can only be caught early if you get checked now.
Do not stop with just a D.R.E. (digital rectal examination). Request, or demand if you have to, a P.S.A. (prostate specific antigen) test as well. If you have a family history of prostate cancer the P.S.A. test is free, if not, it costs $35.00. It could be the best money you ever spent.
If I had done this small thing at that age I believe that I would not be where I am right now.
Don't let this happen to you.
In fact, never mind all of that. If the only criteria in the above statement that resembles you is your age, 35+, you should get checked. If there is anyone in your family who has been diagnosed with any form of cancer at all, you need to be checked. I cannot stress this enough. It can only be stopped if it's caught early and it can only be caught early if you get checked now.
Do not stop with just a D.R.E. (digital rectal examination). Request, or demand if you have to, a P.S.A. (prostate specific antigen) test as well. If you have a family history of prostate cancer the P.S.A. test is free, if not, it costs $35.00. It could be the best money you ever spent.
If I had done this small thing at that age I believe that I would not be where I am right now.
Don't let this happen to you.
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