Well it's now been 1 week since I started my first chemo treatment. I was so truly hoping that the effects of the chemo would have warn off by now. To test these waters, I would periodically not take my nausea pill and see how my body would react. I tried this on Monday morning and that was a mistake. I was feeling oh so miserable that when I made it home for lunch, I took my pill and took a hour long nap to recover.
I knew I needed to get my grass cut Monday night, but I also knew I didn't want to do it. So I owe a BIG thank you to my son Dean who came over on short notice and spent a hour cutting my grass. And I did all the trimming.
Dean and I had a nice visit and he reminded me to just take the stupid nausea pills and stop screwing around. So I'm taking his advice for now - 1 pill every 8 hrs. And I must admit I do feel better. But I know my curiosity will get the best of me and I will skip a pill to see if I have fully recovered.
I was really hoping to golf this weekend, but it looks like rain all weekend. I'll keep hoping.
BTW, I am still working on the big issues like what type of urinary diversion I will choose and if it is worth traveling out of state to have the surgery done. I posted some questions on the BCAN website and haven't received a meaningful response yet. BCAN - bladder cancer advocacy network is a good site for information. I just hope I can get some answers to my questions.
Good Night.
Tuesday, May 12, 2015
Friday, May 8, 2015
Treatment Begins Finally
Well I finally started my chemo treatments on Tuesday (5/5/15). I didn't want to wait any longer. I didn't want to wait a week to have my port put in. I just wanted to get started and I was happy to be able to have my treatments here in Logan. So at 9:00 in the morning I show up just a little nervous. Wondering how my body is going to react to these chemicals. Wondering if I will be strong enough to endure to process.
The staff at Dr. Ben-Jacobs office are great. The nurses take me in and give me my IV for the drip. My treatment is called dose dense MVAV. On my first day I only will receive the M (Methotrexate) with hydration. This takes about 3 hrs. to drip into my body. I leave and I can't believe that I feel just fine. I go back to work and at the end of the day I still feel well enough to take my 4 mi. walk.
On Wednesday I start at 9:30. This is the heavy day. I receive V, A, and C (Vinblastine, Doxorubicin, and Cisplatin) with hydration. This is a long day and takes about 6 hrs. of sitting watching the drips go in. When I leave I am surprised that I feel pretty good. I go back to work and attend a meeting at night. I have to admit that I was starting to feel a little cocky. I'm thinking this chemo stuff isn't going to affect me like it does everyone else. Wrong. That night in bed it started. Upset stomach, gagging, nausea kicked in. I came downstairs and choose one of the three nausea pills and hoped for the best. Somehow I fell back to sleep.
On Thursday I need to go in and get a shot of Neulasta. A drug to help with your white blood cell count and help you from getting an infection. The trick with this is they gave me pills that I am supposed to take of morning of and for 2 days after. Not sure why, but I forgot to take them in the morning. I took them at noon and had the shot at 2:00.
And now it's Friday night and I am still waiting to try to feel normal again. My nausea isn't severe. I'm not throwing up like some do. I can eat a little at meals and keep it down. To be honest the best way I can describe how I feel is I have a constant hangover. Now it's been a real long time since I've had a hangover, but I do remember that feeling. My stomach is queasy and unsettled. I feel like I could barf, but I don't. My head is numb and I don't have a lot of energy. I guess if this is as bad as it gets, I should be grateful. I have heard stories of worse reactions. But still I wish I could just feel normal.
I think feeling normal is a phrase I've been using lately. As I continue in my treatment, I think I know that there will never be that old normal again. I will have to discover what a new normal means and I hope I have the courage to make that discovery the best possible.
Good night for now.
The staff at Dr. Ben-Jacobs office are great. The nurses take me in and give me my IV for the drip. My treatment is called dose dense MVAV. On my first day I only will receive the M (Methotrexate) with hydration. This takes about 3 hrs. to drip into my body. I leave and I can't believe that I feel just fine. I go back to work and at the end of the day I still feel well enough to take my 4 mi. walk.
On Wednesday I start at 9:30. This is the heavy day. I receive V, A, and C (Vinblastine, Doxorubicin, and Cisplatin) with hydration. This is a long day and takes about 6 hrs. of sitting watching the drips go in. When I leave I am surprised that I feel pretty good. I go back to work and attend a meeting at night. I have to admit that I was starting to feel a little cocky. I'm thinking this chemo stuff isn't going to affect me like it does everyone else. Wrong. That night in bed it started. Upset stomach, gagging, nausea kicked in. I came downstairs and choose one of the three nausea pills and hoped for the best. Somehow I fell back to sleep.
On Thursday I need to go in and get a shot of Neulasta. A drug to help with your white blood cell count and help you from getting an infection. The trick with this is they gave me pills that I am supposed to take of morning of and for 2 days after. Not sure why, but I forgot to take them in the morning. I took them at noon and had the shot at 2:00.
And now it's Friday night and I am still waiting to try to feel normal again. My nausea isn't severe. I'm not throwing up like some do. I can eat a little at meals and keep it down. To be honest the best way I can describe how I feel is I have a constant hangover. Now it's been a real long time since I've had a hangover, but I do remember that feeling. My stomach is queasy and unsettled. I feel like I could barf, but I don't. My head is numb and I don't have a lot of energy. I guess if this is as bad as it gets, I should be grateful. I have heard stories of worse reactions. But still I wish I could just feel normal.
I think feeling normal is a phrase I've been using lately. As I continue in my treatment, I think I know that there will never be that old normal again. I will have to discover what a new normal means and I hope I have the courage to make that discovery the best possible.
Good night for now.
Monday, May 4, 2015
Moving On
It's been a while since I've wrote anything down. Sometimes I need to get away or maybe I just get lazy. So last Thursday I had appointments at the Huntsman. I left my house at 7:00 am and returned home at 8:00 pm. Needless to say it was a long day and I was exhausted. We met with Dr. Dechet. He seemed more compassionate this time and willing to listen and answer questions. Of course the news was as I expected, the bladder, prostate, and whatever else has to go. We discussed my treatment - chemotherapy (6 weeks) and then surgery. He recommended that I receive the most powerful of the 3 recommended chemo treatments - ddMVAC (hope I have that right). The dd stands for dose dense. I think I will wait to explain this treatment and drugs for latter. Anyways, assuming I make it through the chemo, they will then schedule me for my RC surgery. There is about a 4 week wait for that to happen.
We then discussed my wonderful 3 choices for urinary diversion - neobladder, Indiana pouch, and Ileal conduit. I asked many questions and received adequate answers. I told them that what I really would like is to meet men who have these 3 options so I can see for myself how these men use these devices. They said they would try to help me. They said each patient signs a 1 year release form and they need to check with people. It sounded like I was asking some strange request. Really - no other dumbass is curious enough about the next 5-20 years of his life that he doesn't want to talk to people who are already walking down this road????? We finished with a nurse showing me actual urostomy bag and how they fit to your stoma. It was helpful, but I still don't see how you could possibly wear a belt or jeans for that matter. I just don't see things loose enough to have the urine drain properly. Just more questions I have to figure out how to get answers to.
We had to wait till 3:00 to see Dr. Gupta, the oncologist. So Barb and I had lunch and went to the Utah Fine Arts Museum to kill the time.
Dr. Gupta and her team sat down with us and explained the chemo treatment and how it worked. She said that we need to get started right away. It's 2 days of treatment with a shot on the 3rd day to help with my white blood cell count. I have full faith in Dr. Gupta and her team, but Barb and I had wanted to discuss if it was possible for me to get my chemo treatment her in Logan. The nausea and a 2 hr. drive back to Logan 2X a week for 6 weeks just seemed something we might want to avoid. The only problem was that the oncologist in Logan does not necessarily agree chemo before surgery. Dr. Gupta graciously agreed to ask Dr. Ben Jacob to work with us and administer my chemo and he agreed. I was surprised and happy that my drive is 5 min. and not 2 hrs. He agreed to follow Dr. Gupta's game plan. I will say that with the time approaching 5:00, the staff at the Huntsman went way above their duties to try and get my heart test and other details transferred up to Logan and scheduled as quickly as possible. By the time we left my mind was exhausted and I gad a long drive home in rush hour traffic.
So Friday I had my echocardiogram at Logan Hospital. I was hoping to here from Dr. Ben Jacobs office, but when I stopped by at 4:00, they were closed. So I wait till Monday.
The weekend was nice. I am learning to enjoy these last few weeks with a normal functioning body. I'll hate to see it go.
So today I called Dr. Ben Jacob's office and the nurse said the ball got dropped on Friday. I am scheduled for consultation with a surgeon on Wednesday who will put in my port and on Friday he will do the procedure. I am anxious to get this started and I want to start on a Monday so I can be done by Tuesday and have as much time to recover by the weekend. The nurse said they could hook me up without a port for the first week. But the bottom line is that even though I chased down the echo report for the Doctor, I didn't start today. Oh well, let's try tomorrow.
When I saw Dr. Gupta at the Huntsman on Thursday, the first thing she said was, "We need to get going on this. It seems you have been dragging your feet." REALLY? As I said, let's try tomorrow.
For now, Good Night.
We then discussed my wonderful 3 choices for urinary diversion - neobladder, Indiana pouch, and Ileal conduit. I asked many questions and received adequate answers. I told them that what I really would like is to meet men who have these 3 options so I can see for myself how these men use these devices. They said they would try to help me. They said each patient signs a 1 year release form and they need to check with people. It sounded like I was asking some strange request. Really - no other dumbass is curious enough about the next 5-20 years of his life that he doesn't want to talk to people who are already walking down this road????? We finished with a nurse showing me actual urostomy bag and how they fit to your stoma. It was helpful, but I still don't see how you could possibly wear a belt or jeans for that matter. I just don't see things loose enough to have the urine drain properly. Just more questions I have to figure out how to get answers to.
We had to wait till 3:00 to see Dr. Gupta, the oncologist. So Barb and I had lunch and went to the Utah Fine Arts Museum to kill the time.
Dr. Gupta and her team sat down with us and explained the chemo treatment and how it worked. She said that we need to get started right away. It's 2 days of treatment with a shot on the 3rd day to help with my white blood cell count. I have full faith in Dr. Gupta and her team, but Barb and I had wanted to discuss if it was possible for me to get my chemo treatment her in Logan. The nausea and a 2 hr. drive back to Logan 2X a week for 6 weeks just seemed something we might want to avoid. The only problem was that the oncologist in Logan does not necessarily agree chemo before surgery. Dr. Gupta graciously agreed to ask Dr. Ben Jacob to work with us and administer my chemo and he agreed. I was surprised and happy that my drive is 5 min. and not 2 hrs. He agreed to follow Dr. Gupta's game plan. I will say that with the time approaching 5:00, the staff at the Huntsman went way above their duties to try and get my heart test and other details transferred up to Logan and scheduled as quickly as possible. By the time we left my mind was exhausted and I gad a long drive home in rush hour traffic.
So Friday I had my echocardiogram at Logan Hospital. I was hoping to here from Dr. Ben Jacobs office, but when I stopped by at 4:00, they were closed. So I wait till Monday.
The weekend was nice. I am learning to enjoy these last few weeks with a normal functioning body. I'll hate to see it go.
So today I called Dr. Ben Jacob's office and the nurse said the ball got dropped on Friday. I am scheduled for consultation with a surgeon on Wednesday who will put in my port and on Friday he will do the procedure. I am anxious to get this started and I want to start on a Monday so I can be done by Tuesday and have as much time to recover by the weekend. The nurse said they could hook me up without a port for the first week. But the bottom line is that even though I chased down the echo report for the Doctor, I didn't start today. Oh well, let's try tomorrow.
When I saw Dr. Gupta at the Huntsman on Thursday, the first thing she said was, "We need to get going on this. It seems you have been dragging your feet." REALLY? As I said, let's try tomorrow.
For now, Good Night.
Wednesday, April 29, 2015
Anger issues
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.
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.
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.
Subscribe to:
Posts (Atom)