Tomorrow morning Barb and I drive down to the Huntsman for an office visit with Dr. Dechet (urologist) and Dr. Gupta (oncologist). This will be my first visit since my biopsy / TURBT. I am anxious to ask Dr. Dechet why I was in so much pain after this procedure. No one forewarned me about this aspect which I feel might have been nice. I really have my doubts about how much compassion this guy has for his patients. He may be the most experienced in this area, but without showing some compassion for my situation leaves me feeling a little angry. So I am anxious to see how this meeting goes and I will try not to start out with a chip on my shoulder over the pain of the last procedure and troubles there after.
So here's what I think will go down tomorrow. Dr. Dechet will come in and tell me my bladder is not fit to try to save. I wanted to try to keep my bladder and just cut out the tumor part of the bladder. This treatment is called a partial cystectomy. I figured part of a bladder is better then none. But as I said at the end of my last post, very few qualify for this. And few doctors will agree to do it. So here comes the part that REALLY SUCKS. Dr. Dechet will then tell me that the way to proceed from here is to perform a radical cystectomy. This is a lovely procedure where they remove your bladder, prostate, and as many adrenal glands as they can get to. Of course, removing the bladder really complicates that action we all do 5-10 times a day - called taking a piss!!! So to solve this problem, medical science will recommend the same procedures they have been doing for the last 40-80 years. You have 3 options - the ileal conduit (you pee into a bag on the outside of your body), the Indiana pouch (they build and attach a bag to the inside wall and you put a catheter in your side to empty), or a neo bladder (an artificial bladder that is plumbed so you can still pee through your penis - at least this option still gives you a reason to still have a penis.) Of coarse with all of these options, you loose the 2nd most important function of the real bladder (the 1st is storing urine), the ability to feel when it is time to urinate. With all of these options, you learn to pee by the clock so to speak. With option 1, the ileal conduit, since the bag is on the outside you have a visual reference.
So this will be my treatment (find everything that might have cancer and cut it out) and my options (figure out how to make it function after we are done). What I have been wondering is how does anyone make a decision based on these 3 options? I know I will have to. And the more I read about these procedures, you realize that all have good and bad points. They all require a lifetime of maintenance. And there are no do overs and the success of whatever option you choose will be affected by the skills of your surgeon.
So do I sound a little angry? And I really don't appreciate when people say, "Oh it's no big deal. You just need to deal with it." Really!! They are f''ing up the most basic of all human functions. Within minutes when we are born, they put a diaper on us. As a child our proud parents proclaim, "Look, he can go pee pee all by himself. He's potty trained." And then there is the shame if you are a bed wetter or you pee your pants in public. And God knows all the potty humor jokes that are forever present every single day of our lives in one way or another.
Of course the most common response I get when I go off on my angry rant, "Would you rather be dead?" Oh - ya - touché. Got me.
Anyway, I know holding on to this anger is not healthy for me. But trust me when I tell you that I have a whole lot more anger then this stored inside me. I feel so many wrong things have led me to this position I'm in now. And I guess overcoming a stroke and a heart attack isn't enough of a challenge for one lifetime. Sometimes it's like an emotional cancer eating me up on the inside and I can't figure out how to cut it out. Yes, I can pray to God, but unfortunately she's on my angry list also. Sometimes it can be a real mess inside me. Somehow, somewhere, sometime the fighter and conqueror will emerge. I hope. He has to. If not, I may get eaten by 2 cancers.
By the way, I do have very positive moments. They do come and I try to hold on to them. A moment like now when I realize and am so grateful for all my family and friends who are praying for me, rooting for me, wanting to help me. Thank you so very much!!!!
Well, let's see if the script I wrote for tomorrow is correct. Maybe I'll be surprised. But for now I'll try and find some peace and with it some sleep. With love - Good Night.
Wednesday, April 29, 2015
Monday, April 27, 2015
Some Bladder Cancer Stats
Bladder cancer is the 6th most common cancer and the 4th most common in men.
Men are 3-4 more times likely to get bladder cancer.
Bladder cancer has over 72,000 new cases each years and kills over 15,000 per year.
The ave. age of a bladder cancer person is 73 yrs old. 9 out 10 people are over 50 yrs old.
The National Cancer Institute spends only 23.4 million on bladder cancer research.
Bladder cancer has a reoccurrence rate of 50-80% and therefore requires life long surveillance. Because of this it is the most expensive cancer to treat on a per patient basis.
Over 20 % of bladder cancer cases are high grade muscle invasive.
The 5 yr. survival rate of stage 2b muscle invasive bladder cancer is 50%.
I hope I have all of these stats correct. My sources ACS, NCI, BCAN.
The treatment for bladder cancer has not changed in over 30 years. With my stage (2b) of bladder cancer, there is supposed to be 3 treatment options. This is very misleading. The 2 least invasive treatments are rarely performed because so few patients qualify for these procedures. For instance one of several requirements is that you must have only one single tumor in your bladder in only certain locations and no other signs of any other stages of cancer in your bladder. Well this is next to impossible for someone with high grade carcinoma. So in reality there is only one gold standard treatment for people like me with stage 2b bladder cancer. And I think it sucks.
Men are 3-4 more times likely to get bladder cancer.
Bladder cancer has over 72,000 new cases each years and kills over 15,000 per year.
The ave. age of a bladder cancer person is 73 yrs old. 9 out 10 people are over 50 yrs old.
The National Cancer Institute spends only 23.4 million on bladder cancer research.
Bladder cancer has a reoccurrence rate of 50-80% and therefore requires life long surveillance. Because of this it is the most expensive cancer to treat on a per patient basis.
Over 20 % of bladder cancer cases are high grade muscle invasive.
The 5 yr. survival rate of stage 2b muscle invasive bladder cancer is 50%.
I hope I have all of these stats correct. My sources ACS, NCI, BCAN.
The treatment for bladder cancer has not changed in over 30 years. With my stage (2b) of bladder cancer, there is supposed to be 3 treatment options. This is very misleading. The 2 least invasive treatments are rarely performed because so few patients qualify for these procedures. For instance one of several requirements is that you must have only one single tumor in your bladder in only certain locations and no other signs of any other stages of cancer in your bladder. Well this is next to impossible for someone with high grade carcinoma. So in reality there is only one gold standard treatment for people like me with stage 2b bladder cancer. And I think it sucks.
Saturday, April 25, 2015
Saturday Part Deuce
So after I wrote this mornings piece, I went for a nice short walk and thought of what I hoped might happen today. And for once it did!!!
My urine cleared up (very little blood) around 12:00. I talked to my mom and discussed if it was worth the risk trying to take catheter #2 out. I had to consider it was the weekend and I knew my Logan urologist was out of town. I was afraid that if I had complications, would there be an urologist around to help me. I went for it. Removed the catheter and waited to urinate. It wasn't perfect, but it was a hell of a lot better then Friday's effort. I can't tell you how relieved and happy I was. Being free of a constant bag of urine and a rubber hose dangling out of the end of my penis and pretending that it didn't bother me. HURRAY!! I'm normal again!!!!!!
I made great use of the rest of the day. I cut my grass, visited with Dean, played Frisbee golf with Dean, Ashley, and friends, and had dinner at BWW. I hope to end my day watching a movie (if I can stay wake). I would hope for a great night's sleep, but I know I will be up several times draining my bladder. I don't think it is functioning 100% since having so may days of vacation.
So VERY grateful for a normal day. I hope to enjoy a few more. I know these days are numbered.
My urine cleared up (very little blood) around 12:00. I talked to my mom and discussed if it was worth the risk trying to take catheter #2 out. I had to consider it was the weekend and I knew my Logan urologist was out of town. I was afraid that if I had complications, would there be an urologist around to help me. I went for it. Removed the catheter and waited to urinate. It wasn't perfect, but it was a hell of a lot better then Friday's effort. I can't tell you how relieved and happy I was. Being free of a constant bag of urine and a rubber hose dangling out of the end of my penis and pretending that it didn't bother me. HURRAY!! I'm normal again!!!!!!
I made great use of the rest of the day. I cut my grass, visited with Dean, played Frisbee golf with Dean, Ashley, and friends, and had dinner at BWW. I hope to end my day watching a movie (if I can stay wake). I would hope for a great night's sleep, but I know I will be up several times draining my bladder. I don't think it is functioning 100% since having so may days of vacation.
So VERY grateful for a normal day. I hope to enjoy a few more. I know these days are numbered.
I was hoping yesterday (Friday), was going to be the day that my life would triumphantly return to normal after Tuesday's biopsy. I was instructed to pull out my own catheter if my urine was mostly free of blood. My urine did look good so at 7:00 am I carefully read the instructions for the 100th time and successfully freed myself from the rubber snake. It's a feeling I am becoming used to unfortunately. I went and had breakfast and a stool softener (to try and get things moving in the rear end) and thought that I would hang around the house long enough to urinate normally one time just to make sure everything was still functioning OK. But when I got the urge to pee, there was a lot of bladder pressure but very low flow and volume. To say I was disappointed is an understatement.
I left and went to work to try and catch up on things. Lane (my business partner) has really been understanding. But after 3 hours my abdomen just hurt. I still was not urinating normally with low flow and volume. I just felt bad. So I came home and called the nurse at Huntsman and told her. She thought I needed to re-catheterize myself. She told me to go to my urologist in Logan and have them do it. I called my doctor right away and they said the doctor was out but the PA would fit me in asap. Thanks to my lovely neighbor Dorothy, I was able to get a ride to the hospital. When I saw the PA, he felt my abdomen and asked if I had had a bowel movement. I said no that I only have been able to pass gas. An ultrasound showed I had only retained about a cup of liquid in my bladder after just urinating. He didn't think I needed a catheter, but just needed to get a bowel movement in asap. He said a catheter wouldn't be bad if it would make me feel more comfortable. Boy am I confused now. Just my luck that abdominal constipation pain and bladder voiding issues would happen at the same time on a late Friday afternoon. We decided to put the catheter in. I called lovely Dorothy, who kindly came and gave me a ride home. Once I got home I decided to sit on the toilet until I had a bowel movement. And a bowel movement I had!! Yea!! You know I felt a hell of a lot better. And it made me think if getting the catheter was a mistake.
So now I have this catheter with a much smaller but more mobile bag. And I'm watching it fill up with a red colored liquid. Blood. What! Why! Why is there blood in my urine now?? There was barely a trace of blood when I removed the 1st catheter this morning and when I was urinating during the day. What has happened? What has changed? Where is the blood coming from? The PA had told me that if I had had a bowel movement that I had his permission to pull the catheter. But I was told by the nurses to not pull the catheter if you are bleeding. I am upset, but I realize the only thing I can do is just wait and see if it clears up later in the night.
I try to relax as I watch my hopeful day slip away. And to add a bit of irony to the day, I watch "Alexander and the Terrible, Horrible, No Good, Very Bad Day." It wasn't as funny as I had hoped. I went to bed, with blood still draining into my catheter bag. And with my smaller bag, the realization that I will be setting my alarm for every 2 hours throughout the night to empty my bag of bloody urine.
You know spending a lot of time by yourself gives you the luxury of talking out loud to yourself. I confess I do this. And last night as I lay in bed I let my anger out. I am afraid I still have not reconciled or accepted the circumstances I find myself in. And so as I prayed aloud with my angry voice, I shouted to God my anger and fears. And when I was done crying, I laid still on my back and thought of nothing and hoped that sleep would come.
I left and went to work to try and catch up on things. Lane (my business partner) has really been understanding. But after 3 hours my abdomen just hurt. I still was not urinating normally with low flow and volume. I just felt bad. So I came home and called the nurse at Huntsman and told her. She thought I needed to re-catheterize myself. She told me to go to my urologist in Logan and have them do it. I called my doctor right away and they said the doctor was out but the PA would fit me in asap. Thanks to my lovely neighbor Dorothy, I was able to get a ride to the hospital. When I saw the PA, he felt my abdomen and asked if I had had a bowel movement. I said no that I only have been able to pass gas. An ultrasound showed I had only retained about a cup of liquid in my bladder after just urinating. He didn't think I needed a catheter, but just needed to get a bowel movement in asap. He said a catheter wouldn't be bad if it would make me feel more comfortable. Boy am I confused now. Just my luck that abdominal constipation pain and bladder voiding issues would happen at the same time on a late Friday afternoon. We decided to put the catheter in. I called lovely Dorothy, who kindly came and gave me a ride home. Once I got home I decided to sit on the toilet until I had a bowel movement. And a bowel movement I had!! Yea!! You know I felt a hell of a lot better. And it made me think if getting the catheter was a mistake.
So now I have this catheter with a much smaller but more mobile bag. And I'm watching it fill up with a red colored liquid. Blood. What! Why! Why is there blood in my urine now?? There was barely a trace of blood when I removed the 1st catheter this morning and when I was urinating during the day. What has happened? What has changed? Where is the blood coming from? The PA had told me that if I had had a bowel movement that I had his permission to pull the catheter. But I was told by the nurses to not pull the catheter if you are bleeding. I am upset, but I realize the only thing I can do is just wait and see if it clears up later in the night.
I try to relax as I watch my hopeful day slip away. And to add a bit of irony to the day, I watch "Alexander and the Terrible, Horrible, No Good, Very Bad Day." It wasn't as funny as I had hoped. I went to bed, with blood still draining into my catheter bag. And with my smaller bag, the realization that I will be setting my alarm for every 2 hours throughout the night to empty my bag of bloody urine.
You know spending a lot of time by yourself gives you the luxury of talking out loud to yourself. I confess I do this. And last night as I lay in bed I let my anger out. I am afraid I still have not reconciled or accepted the circumstances I find myself in. And so as I prayed aloud with my angry voice, I shouted to God my anger and fears. And when I was done crying, I laid still on my back and thought of nothing and hoped that sleep would come.
Thursday, April 23, 2015
Feelings
It's Thursday night. One more night with this foley catheter and in the morning I get to pull it out. Should be fine, I hope. There isn't any blood in my urine, but it is still uncomfortable to urinate. I am not sure what the problem is. I just hope it corrects itself once the catheter is out. I will be glad to be free of the tube and bag.
You know right now I am just feeling tired. Tired of thinking about my cancer. Tired of thinking about what happened in the past. Tired of thinking about what might happen in the future. Tired of thinking about test results. Tired of thinking about if I am choosing the right doctors. Tired of thinking about the next doctor's appointment. Tired of thinking about what choices I may have to make in the next 4 weeks. Tired of thinking about how I will ever be able to make such a choice. Tired of thinking about what my quality of life will be after these choices. Tired of thinking about if I will have the medical and personnel support I will need to help me through this transition. Tired of thinking about how will I be able to work and meet financial obligations. Tired of thinking about how this is affecting my family. Sometimes I get tired.
Thinking of family, maybe I should take some time to explain my unusual family situation. I will spare you of the details. I have a son, Dean, who is 21 years old and has moved out of the house a year or so ago. I feel he lives the life of a typical 21 yr old who doesn't know what to do with his life. I am married. I have been married to Barbara for 22 yrs and we have been separated for 15 of those years. Barbara has been a great help to me in these last weeks. She has gone with me to doctor's appointments and stayed with me through the surgeries. She tries to help me the best she can. But Barbara has her own issues and I wonder how well she will hold up if things start to go south for me. I do have many good friends who have offered their support and I know if I needed help they would respond. And I have always had the support of all my family. I just hope that the surgeries will leave me in a place where I can function well enough on my own.
Not much more to say tonight. I am tired. Just want to say thank you to everyone for their thoughts and prayers. Thank you to Barbara for her time and support.
You know right now I am just feeling tired. Tired of thinking about my cancer. Tired of thinking about what happened in the past. Tired of thinking about what might happen in the future. Tired of thinking about test results. Tired of thinking about if I am choosing the right doctors. Tired of thinking about the next doctor's appointment. Tired of thinking about what choices I may have to make in the next 4 weeks. Tired of thinking about how I will ever be able to make such a choice. Tired of thinking about what my quality of life will be after these choices. Tired of thinking about if I will have the medical and personnel support I will need to help me through this transition. Tired of thinking about how will I be able to work and meet financial obligations. Tired of thinking about how this is affecting my family. Sometimes I get tired.
Thinking of family, maybe I should take some time to explain my unusual family situation. I will spare you of the details. I have a son, Dean, who is 21 years old and has moved out of the house a year or so ago. I feel he lives the life of a typical 21 yr old who doesn't know what to do with his life. I am married. I have been married to Barbara for 22 yrs and we have been separated for 15 of those years. Barbara has been a great help to me in these last weeks. She has gone with me to doctor's appointments and stayed with me through the surgeries. She tries to help me the best she can. But Barbara has her own issues and I wonder how well she will hold up if things start to go south for me. I do have many good friends who have offered their support and I know if I needed help they would respond. And I have always had the support of all my family. I just hope that the surgeries will leave me in a place where I can function well enough on my own.
Not much more to say tonight. I am tired. Just want to say thank you to everyone for their thoughts and prayers. Thank you to Barbara for her time and support.
Wednesday, April 22, 2015
You put what where?
Well I'm home from Salt Lake and my biopsy at the Huntsman Center. Tuesday was a long day. I don't know anything new concerning the extent of cancer in my bladder. I never saw the doctor on Tuesday. I did speak to an intern before the surgery. I guess I had good reason to be nervous. I was in pain from the moment I woke up from the surgery. My bladder hurt. It felt like I had to pee but nothing would happen. I would get sharp pains in my bladder. And I soon realized that the doctor did catheterized me. The nurses did everything they could to help me. I was finally able to swallow some pain pills and left the hospital around 9:30 pm. I was told that I have an appointment with the doctor on May 7th. That's more then 2 weeks away. I don't understand why I can't get in sooner. I don't understand why I was in pain after this operation. And I sure as hell don't like having this catheter shoved up my penis with 5 feet of tubing and a 600 ml bag attached. And I have the added bonus of pulling it out myself on Friday morning.
History - final episode (I hope)
So we are up to March 12, 2015 and the 2nd biopsy. I met with my Logan IHC doctor on the 17th in the evening. Of course I had already had a copy of the pathology report, so I already knew the results - high grade muscle invasive tumor. What I wanted to hear is how I went from inconclusive carcinoma in situ to stage 2b bladder cancer in 6 months. The doctor was almost apologetic and said that he thinks they missed something the first trip in. I try hard not to be angry, but it is hard. I know I have to move on. So now I took control of my situation. Since that day I have been reading everything I could find on bladder cancer. And unfortunately there was not any good news when it comes to my stage 2b cancer. I knew there was no way I was going to trust my Logan IHC doctor with my condition any more. I researched hospitals that specialized in bladder cancer - Sloan Kettering and the Mayo. But the expense of that I thought would be to much. And we do have a hospital right here in Utah that specializes in cancer treatment - the Huntsman Cancer Institute. And of course IHC does have bladder cancer doctors in Salt Lake. The more I researched doctors and hospitals, the more frustrated I became. I joked that it is easier to find a qualified plumber or mechanic then it is to find the most qualified doctor. Think about that. You have a disease that will kill you and you have very limited information on what doctor is the best and most experienced with your disease. Anyway, this is how I came to the Huntsman and I had to insist on the most experienced doctor. I found this true with the Huntsman and IHC is that they will try and push any new patient on the least senior doctor so they can gain experience and they have more time. But I want the most experienced doctor.
Sorry, one last history note. My Logan IHC doctor arranged for me to a CT scan and then a PET/CT scan in March. The purpose was to see if the cancer had spread outside my bladder. There were nodes on my lung, kidney, and pelvic bone. None of these had metastasized yet. So as far as we know now, the cancer is still in the bladder and has not spread.
There is much more I have discovered about bladder cancer that I will share as I travel through this unexpected journey.
good night
History - final episode (I hope)
So we are up to March 12, 2015 and the 2nd biopsy. I met with my Logan IHC doctor on the 17th in the evening. Of course I had already had a copy of the pathology report, so I already knew the results - high grade muscle invasive tumor. What I wanted to hear is how I went from inconclusive carcinoma in situ to stage 2b bladder cancer in 6 months. The doctor was almost apologetic and said that he thinks they missed something the first trip in. I try hard not to be angry, but it is hard. I know I have to move on. So now I took control of my situation. Since that day I have been reading everything I could find on bladder cancer. And unfortunately there was not any good news when it comes to my stage 2b cancer. I knew there was no way I was going to trust my Logan IHC doctor with my condition any more. I researched hospitals that specialized in bladder cancer - Sloan Kettering and the Mayo. But the expense of that I thought would be to much. And we do have a hospital right here in Utah that specializes in cancer treatment - the Huntsman Cancer Institute. And of course IHC does have bladder cancer doctors in Salt Lake. The more I researched doctors and hospitals, the more frustrated I became. I joked that it is easier to find a qualified plumber or mechanic then it is to find the most qualified doctor. Think about that. You have a disease that will kill you and you have very limited information on what doctor is the best and most experienced with your disease. Anyway, this is how I came to the Huntsman and I had to insist on the most experienced doctor. I found this true with the Huntsman and IHC is that they will try and push any new patient on the least senior doctor so they can gain experience and they have more time. But I want the most experienced doctor.
Sorry, one last history note. My Logan IHC doctor arranged for me to a CT scan and then a PET/CT scan in March. The purpose was to see if the cancer had spread outside my bladder. There were nodes on my lung, kidney, and pelvic bone. None of these had metastasized yet. So as far as we know now, the cancer is still in the bladder and has not spread.
There is much more I have discovered about bladder cancer that I will share as I travel through this unexpected journey.
good night
Tuesday, April 21, 2015
Biopsy #3
It's not quite 7:00 and I'm in a nice hotel suite in Salt Lake waiting to go to The Huntsman Cancer Institute for my 3rd biopsy of my bladder. They would like me there at 12:00. My surgery is scheduled for 3:00. I'll probably get back to the hotel about 6:00. I am a little nervous. This is my first surgery at the Huntsman with a new doctor who will probably be my doctor for this whole journey. At some point soon, I'm going to have to put my faith 100% into this doctor and hospital. But my past experience keeps me from doing that yet. I am nervous because the doctor and hospital seem to do things a little different then my IHC hospital in Logan. For example, this doctor tells me I may awake up to find a catheter inserted into my urethra!! Why? The doctor in Logan never even talked about that in the two biopsies he did on me. I understand the doctor will put it in while I'm asleep. But the nurse tells me that after 3-5 days I get to remove it myself. How the hell does that work? Something tells me that can't me a comfortable experience. Well, I guess I have to man up and put my faith in the doctors and staff that everything will be alright. Prayers accepted.
BTW, I haven't really said why I am having this operation. I'll have time to explain that while we wait for the pathology report.
MORE HISTORY:
OK, So we left off with the inconclusive results of the first biopsy.
Although I was upset with the results, I never really thought that I could have cancer anyway. I don't ever recall the doctor sitting down with me and saying, "Jerry, you know these problems you have been having could be symptoms of bladder cancer." And for whatever reason, I thought my problem was still in the prostate. Anyway, for what ever reason I never looked into bladder cancer myself. I choice I now regret. But I did not stop trying to help solve my urinary problems. And in hind sight this is where my anger comes.
It was the day after Christmas and I got up early and spent a beautiful morning in the mountains XC skiing. It was a good long, hard workout (at least for my age). I got home and cleaned up and about 1:00, I had to pee. I felt that sudden urgency that made me think-here we go again. And the urine came out slow, burning, and red. Now most of the times my good workouts happened on the weekend and so this problem wouldn't occur when the doctors were in. But this day was different. It was Friday. I was so excited that I got in my truck and drove to see the doctor. I thought that for once they would see my problem I real time and have an answer for me. When I got there, all I found was the receptionist and she said everyone went home at 12:00. Oh I was disappointed and upset. I explained my situation and she told me I could go down to the emergency room lab to give a urine sample. Anyway, after more then an hour I finally left a red urine sample and went home frustrated. The soonest appointment I got was more then a week later. When I met with the PA and asked what he thought of my urine sample, he said something and prescribed me a new blue pill.
I had the same red urine the weekend workout on Valentine's day. More then a week later I got to see the doctor this time. He comes in and says we have to do something about the blood in your urine. He said the urine sample (which looked clear by now) contained blood. Then he starts looking at my file on the computer and turns to me and says, "have we ever talked to that pathologist about your biopsy report." I remind him that he tried initially but the pathologist was on vacation and no further attempts were made that I remember. So he quickly tells me that I need to get a second biopsy done asap. And so it is scheduled for 3/12/15. Of course, I have said what that outcome was. And we are just about up to date.
So let me quickly vent. When the first biopsy says, "... diligent follow up is warranted." DON'T EXPECT YOUR DOCTORS TO BE DILIGENT!!!! You must be diligent!!! You are your own best doctor. Do your homework. Know your body. I will regret my lack of diligence from 9/14 thru 3/15 for hopefully years to come.
OK. I'm going to calm down now and relax before my surgery.
BTW, I haven't really said why I am having this operation. I'll have time to explain that while we wait for the pathology report.
MORE HISTORY:
OK, So we left off with the inconclusive results of the first biopsy.
Although I was upset with the results, I never really thought that I could have cancer anyway. I don't ever recall the doctor sitting down with me and saying, "Jerry, you know these problems you have been having could be symptoms of bladder cancer." And for whatever reason, I thought my problem was still in the prostate. Anyway, for what ever reason I never looked into bladder cancer myself. I choice I now regret. But I did not stop trying to help solve my urinary problems. And in hind sight this is where my anger comes.
It was the day after Christmas and I got up early and spent a beautiful morning in the mountains XC skiing. It was a good long, hard workout (at least for my age). I got home and cleaned up and about 1:00, I had to pee. I felt that sudden urgency that made me think-here we go again. And the urine came out slow, burning, and red. Now most of the times my good workouts happened on the weekend and so this problem wouldn't occur when the doctors were in. But this day was different. It was Friday. I was so excited that I got in my truck and drove to see the doctor. I thought that for once they would see my problem I real time and have an answer for me. When I got there, all I found was the receptionist and she said everyone went home at 12:00. Oh I was disappointed and upset. I explained my situation and she told me I could go down to the emergency room lab to give a urine sample. Anyway, after more then an hour I finally left a red urine sample and went home frustrated. The soonest appointment I got was more then a week later. When I met with the PA and asked what he thought of my urine sample, he said something and prescribed me a new blue pill.
I had the same red urine the weekend workout on Valentine's day. More then a week later I got to see the doctor this time. He comes in and says we have to do something about the blood in your urine. He said the urine sample (which looked clear by now) contained blood. Then he starts looking at my file on the computer and turns to me and says, "have we ever talked to that pathologist about your biopsy report." I remind him that he tried initially but the pathologist was on vacation and no further attempts were made that I remember. So he quickly tells me that I need to get a second biopsy done asap. And so it is scheduled for 3/12/15. Of course, I have said what that outcome was. And we are just about up to date.
So let me quickly vent. When the first biopsy says, "... diligent follow up is warranted." DON'T EXPECT YOUR DOCTORS TO BE DILIGENT!!!! You must be diligent!!! You are your own best doctor. Do your homework. Know your body. I will regret my lack of diligence from 9/14 thru 3/15 for hopefully years to come.
OK. I'm going to calm down now and relax before my surgery.
Saturday, April 18, 2015
More History
It seems to me that this history background stuff might be boring if it didn't happen to you. But it did happen to me. And how I got to this point, I hope may help somebody NOT get to this point, because my future doesn't look all blue skies and sunshine. So back to the history.
I really suck at remembering dates, but I looked up when my kidney stone was done and it was the last part of 2013. So I continue seeing the urologist because I continue having the same occasional problem urinating as I described earlier. They put me on Flowmax to shrink my prostate. My PSA continues to go up and down, but never a number high enough for alarm bells. They continue to find minor blood in my urine, but can find no bacteria to point to an infection. So I form a new theory that my problem is coming from my prostate. When I exercise, my big old prostate gets banged up and swells up causing my problem. The doctor doesn't buy my theory, but he doesn't have a clue either. He would like to do a cystoscope on me. This is where they shove a camera up your urethra. I tell the doctor that those two bottom orifices are one way streets and the camera would be going the wrong way. Growing up I remember my father telling a story of a doctor putting something up the end of his penis and saying it was the most painful thing he had ever did. The mental image of this process sent shivers thru my groin. But after a few more urinary episodes the doctor during a visit in September 2014 convinced me that the scope was the only way we were going to figure this out. He explained it and told me it would be done in 5 minutes.
OK men (or maybe ladies also) let me tell you how it is. You lay down on a table. They take some sort of syringe thing that is filled with a numbing gel and squirt it into the urethra and they also fill your bladder with saline solution. They say they need your bladder full. That does feel strange. You feel like you need to pee but you don't. They give you a moment or two and then they let you know it's coming. They tell you that you have to relax. They say if you tighten your groin or sphincter muscles, you will only make it worse. So man I tried to relax. I took deep breathes and tried to go to that nothing box in my brain. Yes, you can feel this thing being inserted in you. No, it is not at all painful. Is it uncomfortable - you bet! You can feel as it slides and rotates around. Let's just say that you are glad when it comes out. And it does only take maybe 5 minutes although I'm sure it did seem longer. BUT PLEASE DON'T BE AFRAID - GET IT DONE IF NEEDED. IT COULD SAVE YOUR LIFE!!
So we get done and I go back in and get dressed. The doctor comes in and says that he saw some spots in my bladder that concerned him. They were not big, but he thought they might be something that might lead to cancer, kind of pre cancer cells. Anyway, he wanted to do a biopsy and make sure. So on 9/18/14, I had my first biopsy. They put you out. I didn't feel a thing. Everything went great. I went home. Urinated blood for at least the rest of the day. I was in absolutely no pain thanks to some good pain meds.
The operation was on a Thursday and the doctor said he may have the pathology report late Friday or for sure Monday. Waiting for that report was difficult. I didn't get a call until Tuesday. When the doctor called I couldn't believe what I was hearing. The pathologist said that the results were "INCONCLUSIVE"!!! WHAT!!! How can that be??? Rather then wait to talk to the doctor in person, I went to the office and picked up a copy of the report for myself. I spent the rest of that day researching until I understood every damn word on that report. I won't get into the details. To be honest, it still upsets me when I read it. The bottom line is he said it looked like it could be or could become high grade carcinoma in situ (baby cancer). But he wouldn't say for sure. He said if the urologist felt differently about the report, then we should have another biopsy. Part of his last quote reads, ".... diligent clinical follow up is warranted."
I need to stop now. The story only gets better / worse and I tend to emotional when I retell it. I realize that I can't change what has happened. I have cried often and still do when I dwell to long here. But I so truly hope that by sharing this it may help someone avoid my outcome. I will try to continue the story tomorrow. I want to focus on the present asap.
I really suck at remembering dates, but I looked up when my kidney stone was done and it was the last part of 2013. So I continue seeing the urologist because I continue having the same occasional problem urinating as I described earlier. They put me on Flowmax to shrink my prostate. My PSA continues to go up and down, but never a number high enough for alarm bells. They continue to find minor blood in my urine, but can find no bacteria to point to an infection. So I form a new theory that my problem is coming from my prostate. When I exercise, my big old prostate gets banged up and swells up causing my problem. The doctor doesn't buy my theory, but he doesn't have a clue either. He would like to do a cystoscope on me. This is where they shove a camera up your urethra. I tell the doctor that those two bottom orifices are one way streets and the camera would be going the wrong way. Growing up I remember my father telling a story of a doctor putting something up the end of his penis and saying it was the most painful thing he had ever did. The mental image of this process sent shivers thru my groin. But after a few more urinary episodes the doctor during a visit in September 2014 convinced me that the scope was the only way we were going to figure this out. He explained it and told me it would be done in 5 minutes.
OK men (or maybe ladies also) let me tell you how it is. You lay down on a table. They take some sort of syringe thing that is filled with a numbing gel and squirt it into the urethra and they also fill your bladder with saline solution. They say they need your bladder full. That does feel strange. You feel like you need to pee but you don't. They give you a moment or two and then they let you know it's coming. They tell you that you have to relax. They say if you tighten your groin or sphincter muscles, you will only make it worse. So man I tried to relax. I took deep breathes and tried to go to that nothing box in my brain. Yes, you can feel this thing being inserted in you. No, it is not at all painful. Is it uncomfortable - you bet! You can feel as it slides and rotates around. Let's just say that you are glad when it comes out. And it does only take maybe 5 minutes although I'm sure it did seem longer. BUT PLEASE DON'T BE AFRAID - GET IT DONE IF NEEDED. IT COULD SAVE YOUR LIFE!!
So we get done and I go back in and get dressed. The doctor comes in and says that he saw some spots in my bladder that concerned him. They were not big, but he thought they might be something that might lead to cancer, kind of pre cancer cells. Anyway, he wanted to do a biopsy and make sure. So on 9/18/14, I had my first biopsy. They put you out. I didn't feel a thing. Everything went great. I went home. Urinated blood for at least the rest of the day. I was in absolutely no pain thanks to some good pain meds.
The operation was on a Thursday and the doctor said he may have the pathology report late Friday or for sure Monday. Waiting for that report was difficult. I didn't get a call until Tuesday. When the doctor called I couldn't believe what I was hearing. The pathologist said that the results were "INCONCLUSIVE"!!! WHAT!!! How can that be??? Rather then wait to talk to the doctor in person, I went to the office and picked up a copy of the report for myself. I spent the rest of that day researching until I understood every damn word on that report. I won't get into the details. To be honest, it still upsets me when I read it. The bottom line is he said it looked like it could be or could become high grade carcinoma in situ (baby cancer). But he wouldn't say for sure. He said if the urologist felt differently about the report, then we should have another biopsy. Part of his last quote reads, ".... diligent clinical follow up is warranted."
I need to stop now. The story only gets better / worse and I tend to emotional when I retell it. I realize that I can't change what has happened. I have cried often and still do when I dwell to long here. But I so truly hope that by sharing this it may help someone avoid my outcome. I will try to continue the story tomorrow. I want to focus on the present asap.
Friday, April 17, 2015
One Month
So it's been 1 month (3/17/15) since I sat down and was told the results of the pathology report.
Went to see an oncologist in Salt Lake this morning. Talked about why or why not I wouldn't have chemo prior to any surgery. And the 2 main types of chemo that would be used if I choose to have chemo prior to surgery. He stated that having chemo prior increases your chance of survival about 5%. So when you are looking at 50% survival rate, some people think that it is just not worth putting your body through that ordeal for 5%. Every doctor I've seen brings up the 50% thing - ya I get it. Anyway, we had a good talk for about an hour.
History Part 2 -
Let's continue from last night. So at what point does a man finally say, "Hey, I'm tired of dealing with this pain. I think I'll see a doctor!" Well for me it took years. A woman might say that there is an inverse correlation between the time it takes a man to see a doctor about a problem and his intelligence. I might be a case study for that theory.
Anyway, I was convinced that this problem is caused by a kidney stone. I figured that when I exercised the stone would sometimes move around and settle in an area that restricted the urine flow and the irritation resulted in some blood. So I call the urologist and talk to the PA on the phone and told him that I think I have a kidney stone and he arranges for me to have an x-ray before I see him. Well, you will never guess. I had a flipping stone. I think I'm a genius - at least for a while. So I visit with the PA and he gives me a prostate check (older men will know this procedure). He informs me that my prostate is very enlarged and I had a high PSA and that is where he thinks my problem lies. And the blood is likely the result of an infection.
Well, I had the stone blasted. The operation was fine. The recovery was awful. Once at home I got an upset stomach. Couldn't keep the pain pills down. Pain went to a 9 on a 10 scale. Went to the emergency room. They IV drugged me (that felt good) and told me I couldn't leave until I urinated for them. I finally had the urge so they led me to the bathroom and gave me a cup for a urine sample. Well I had a dilemma, I needed one hand to push aside the gown and the other hand to hold the cup and the other hand to hold......you get the point. And I need to mention that nobody told me what my urine would look like after this procedure. So here's this guy high on meds, trying to hold 3 things with 2 hands and all of sudden pure blood comes squirting out of my penis. Well, I freaked out, jumped up and let loose of everything and made a mess in the bathroom. Once finished, I calmly gathered myself, left the bathroom and informed the staff that there was a little mess in the bathroom.
Well, that's enough for tonight. I'll get to the first biopsy tomorrow.
Goodnight.
Went to see an oncologist in Salt Lake this morning. Talked about why or why not I wouldn't have chemo prior to any surgery. And the 2 main types of chemo that would be used if I choose to have chemo prior to surgery. He stated that having chemo prior increases your chance of survival about 5%. So when you are looking at 50% survival rate, some people think that it is just not worth putting your body through that ordeal for 5%. Every doctor I've seen brings up the 50% thing - ya I get it. Anyway, we had a good talk for about an hour.
History Part 2 -
Let's continue from last night. So at what point does a man finally say, "Hey, I'm tired of dealing with this pain. I think I'll see a doctor!" Well for me it took years. A woman might say that there is an inverse correlation between the time it takes a man to see a doctor about a problem and his intelligence. I might be a case study for that theory.
Anyway, I was convinced that this problem is caused by a kidney stone. I figured that when I exercised the stone would sometimes move around and settle in an area that restricted the urine flow and the irritation resulted in some blood. So I call the urologist and talk to the PA on the phone and told him that I think I have a kidney stone and he arranges for me to have an x-ray before I see him. Well, you will never guess. I had a flipping stone. I think I'm a genius - at least for a while. So I visit with the PA and he gives me a prostate check (older men will know this procedure). He informs me that my prostate is very enlarged and I had a high PSA and that is where he thinks my problem lies. And the blood is likely the result of an infection.
Well, I had the stone blasted. The operation was fine. The recovery was awful. Once at home I got an upset stomach. Couldn't keep the pain pills down. Pain went to a 9 on a 10 scale. Went to the emergency room. They IV drugged me (that felt good) and told me I couldn't leave until I urinated for them. I finally had the urge so they led me to the bathroom and gave me a cup for a urine sample. Well I had a dilemma, I needed one hand to push aside the gown and the other hand to hold the cup and the other hand to hold......you get the point. And I need to mention that nobody told me what my urine would look like after this procedure. So here's this guy high on meds, trying to hold 3 things with 2 hands and all of sudden pure blood comes squirting out of my penis. Well, I freaked out, jumped up and let loose of everything and made a mess in the bathroom. Once finished, I calmly gathered myself, left the bathroom and informed the staff that there was a little mess in the bathroom.
Well, that's enough for tonight. I'll get to the first biopsy tomorrow.
Goodnight.
Thursday, April 16, 2015
Where to start........
Leader - Hi and welcome to BCA or Bladder Cancer Anonymous. Do we have any new people joining us tonight?
Jerry - Hi, my name is Jerry and I have stage 2B muscle invasive bladder cancer and it's been 2 days since I've seen my last doctor.
Group - Welcome Jerry!
OK, enough of the AA satire. But there you have it. I wanted to start a blog for a few reasons. First, I want to journal this unexpected journey I am about to travel. From the day the doctor informed me of this condition, I knew a new life was just beginning - My new reality. Second, I wanted a way that I could share this journey with family and friends. And third and most important, I wanted a way to share my experience in the hope that it might help prevent someone from unfortunately taking this journey. Or if someone should find themselves on this path, I hope I can share some knowledge on what I've learned, mistakes I have or will make, and experiences of what they might expect to encounter. I hope to be brutally honest and truthful.
So let's get started....
I was told of my bladder cancer on 3/17/15. I had my 2nd bladder biopsy on 3/12/15. I had my 1st bladder biopsy on.... You know this seems boring, but if I am going to help anyone out there avoid this I need to start at the real beginning. But I don't want to do this history crap all at once because it will put both you and I asleep. So how about I give a little history each day. And if any of this history sounds familiar - run - don't walk - to your nearest urologist!!!!
History Lesson 1 -
Like most men, I can avoid going to a doctor over a little body pain that comes and goes for years. And so for maybe 5-10 years I would have these episodes where I would have trouble urinating. These episodes would last for about 1-2 days and would many times happen after I had a strenuous workout - but not always. They would happen maybe once every couple of months. And I would know it was starting when I would get a sudden urge that I needed to urinate NOW. So I would run to the bathroom and hopefully make it in time to feel this burning sensation as the urine slowly expelled itself in an amount of a couple ounces. And then within 30 mins., I'd have to go again with the same result. And sometimes, but not always, there would be the slight presence of blood. I thought I was curing this condition by drinking lots of cranberry juice and water. And usually by the next morning everything was fine.
Well enough with history for tonight, I have an 8:00 appointment with an IHC (my healthcare provider) oncologist in Salt Lake tomorrow morn. That means an early rise for a 2 hr drive.
Goodnight.
Jerry - Hi, my name is Jerry and I have stage 2B muscle invasive bladder cancer and it's been 2 days since I've seen my last doctor.
Group - Welcome Jerry!
OK, enough of the AA satire. But there you have it. I wanted to start a blog for a few reasons. First, I want to journal this unexpected journey I am about to travel. From the day the doctor informed me of this condition, I knew a new life was just beginning - My new reality. Second, I wanted a way that I could share this journey with family and friends. And third and most important, I wanted a way to share my experience in the hope that it might help prevent someone from unfortunately taking this journey. Or if someone should find themselves on this path, I hope I can share some knowledge on what I've learned, mistakes I have or will make, and experiences of what they might expect to encounter. I hope to be brutally honest and truthful.
So let's get started....
I was told of my bladder cancer on 3/17/15. I had my 2nd bladder biopsy on 3/12/15. I had my 1st bladder biopsy on.... You know this seems boring, but if I am going to help anyone out there avoid this I need to start at the real beginning. But I don't want to do this history crap all at once because it will put both you and I asleep. So how about I give a little history each day. And if any of this history sounds familiar - run - don't walk - to your nearest urologist!!!!
History Lesson 1 -
Like most men, I can avoid going to a doctor over a little body pain that comes and goes for years. And so for maybe 5-10 years I would have these episodes where I would have trouble urinating. These episodes would last for about 1-2 days and would many times happen after I had a strenuous workout - but not always. They would happen maybe once every couple of months. And I would know it was starting when I would get a sudden urge that I needed to urinate NOW. So I would run to the bathroom and hopefully make it in time to feel this burning sensation as the urine slowly expelled itself in an amount of a couple ounces. And then within 30 mins., I'd have to go again with the same result. And sometimes, but not always, there would be the slight presence of blood. I thought I was curing this condition by drinking lots of cranberry juice and water. And usually by the next morning everything was fine.
Well enough with history for tonight, I have an 8:00 appointment with an IHC (my healthcare provider) oncologist in Salt Lake tomorrow morn. That means an early rise for a 2 hr drive.
Goodnight.
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