Tomorrow is Friday and I was hoping to feel back at full strength for the weekend. But I don't think that is going to happen. This 2nd round of chemo seems to be hanging on for a while. A general lack of energy, lack of appetite, and shortness of breathe seem to be an everyday situation. For some reason with this go around I have developed sinus pain and swelling. Just something else to deal with. None of this makes it impossible to function. But all them combined does make it a challenge.
The problem is that starting Tuesday I start my 3rd and final round of chemo. I am nervous that if I go into this last round in a weak state, the 3rd treatment will really leave me in a bad state. I can see a possibility of a minimum 2 week recovery. I know they want to get a CT scan done after my chemo, but it will be a while before I can hold down all the contrast they want me to drink.
Well, I hope I feel well enough to play 9 holes on Sunday. I won't even try to walk, it will be a cart for me.
Good night.
Thursday, May 28, 2015
Thursday, May 21, 2015
Feeling Strange
Well, I just finished round 2 of chemo today and am feeling the effects. Thank goodness for nausea medicine. But what has got to me this round is this strange addition a surgeon put into my upper chest on Tuesday morning. It is my port, a device that allows medicine(?) to be more easily delivered to my blood stream. It is inserted under my skin near my left side collar bone and travels down into or a vessel near my heart. I guess this because before I left the hospital, they do a quick chest x ray to make sure the port didn't slide to far down into the heart. Anyway, tonight I got to take off the bandages and shower. For the first time I was able to look at this object pushing out of my chest. It is tender and does not look like it belongs. I stare into the mirror at this thing and the thoughts and emotions of having to have this damn thing in my body come to the surface. And one emotion that rises is I feel a little scared. I'm going to be wearing this thing for a long time and I suppose I will get used to it. But right now it is a symbol of what has gone wrong in me.
Time to try and sleep
Good night
Time to try and sleep
Good night
Monday, May 18, 2015
Starting Chemo Again
I know it's been a while since I've logged in. I just there isn't much to say. I really started to feel better around Thursday. I got my appetite back and haven't taken medication for a while. I enjoyed cooking some of my favorite foods and I know I've put back on all of the weight I may have lost.
But tomorrow everything changes. I have to be at the hospital surgical center at 6:00 am to have my chemo port installed. The port is a little IV type devise that gets inserted under my color bone. I don't know if anything sticks out of my skin. I just know that the chemo nurses will plug into the port for an easier way to transfer the chemo drugs. Then at 9:30, it's over to the chemo clinic to start the 1st treatment of round two. I hope it goes at least as well as the first round. This time I will just stay on the medication and hope it continues to help.
I have learned that I am to have 3 rounds of chemo, not 4. Don't know why. When I am done they will do another CT scan and see how I look. See if the spots still are present or any new spots - i.e. has the cancer spread outside the bladder. And maybe did they shrink the present tumor in my bladder. I will meet with my doctor and discuss when the surgery will take place. looking at things, I'm going to guess mid July. We'll see.
Speaking of Doctors, I am going to vent again. I have tried to ask questions via email to my doctor's staff - who answers his email. They say my questions are good, but are best answered in person or over the phone. So as an example, here's one of my questions. "How many neobladders or ileal conduits has Dr. Dechet performed in the last 12 months? In the last 5 years?" When I asked why this question could not be answered by email, they then told me, "This will have to be answered by Dr. Dechet. We do not keep a list of how many procedures he has preformed. I can assure you he has a lot of experience in this procedure."
I am trying hard to educate myself so I can make the best decisions I can. I read a lot. And one source is the BCAN Inspire forum. I can't tell you the number of comments that say- "Find out how many he's done", "Get the most experienced surgeon you can", "Experience matters". So how am I supposed to feel about this Dr. Dechet? I have already asked him this question to his face every time we have met and he blows it off and says he does more then anyone else in this area. Well yes I can believe that. But that doesn't answer my Fu#*^#g question!!!
Anyway, the Huntsman Cancer Institute is the only local choice I have. I don't know if I have the courage to look out of state. I am envious of those who live in larger metropolitan areas who can choose from 3 hospitals.
Enough for now. Time to ease my mind so I can sleep. Good night.
But tomorrow everything changes. I have to be at the hospital surgical center at 6:00 am to have my chemo port installed. The port is a little IV type devise that gets inserted under my color bone. I don't know if anything sticks out of my skin. I just know that the chemo nurses will plug into the port for an easier way to transfer the chemo drugs. Then at 9:30, it's over to the chemo clinic to start the 1st treatment of round two. I hope it goes at least as well as the first round. This time I will just stay on the medication and hope it continues to help.
I have learned that I am to have 3 rounds of chemo, not 4. Don't know why. When I am done they will do another CT scan and see how I look. See if the spots still are present or any new spots - i.e. has the cancer spread outside the bladder. And maybe did they shrink the present tumor in my bladder. I will meet with my doctor and discuss when the surgery will take place. looking at things, I'm going to guess mid July. We'll see.
Speaking of Doctors, I am going to vent again. I have tried to ask questions via email to my doctor's staff - who answers his email. They say my questions are good, but are best answered in person or over the phone. So as an example, here's one of my questions. "How many neobladders or ileal conduits has Dr. Dechet performed in the last 12 months? In the last 5 years?" When I asked why this question could not be answered by email, they then told me, "This will have to be answered by Dr. Dechet. We do not keep a list of how many procedures he has preformed. I can assure you he has a lot of experience in this procedure."
I am trying hard to educate myself so I can make the best decisions I can. I read a lot. And one source is the BCAN Inspire forum. I can't tell you the number of comments that say- "Find out how many he's done", "Get the most experienced surgeon you can", "Experience matters". So how am I supposed to feel about this Dr. Dechet? I have already asked him this question to his face every time we have met and he blows it off and says he does more then anyone else in this area. Well yes I can believe that. But that doesn't answer my Fu#*^#g question!!!
Anyway, the Huntsman Cancer Institute is the only local choice I have. I don't know if I have the courage to look out of state. I am envious of those who live in larger metropolitan areas who can choose from 3 hospitals.
Enough for now. Time to ease my mind so I can sleep. Good night.
Tuesday, May 12, 2015
Chemo Effects
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.
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.
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.
Subscribe to:
Posts (Atom)