Going to go with a quick hitter today, but there are updates that need to be written today. Had the appointment with the Radiologist at IU Med today. Bottom line is that he is willing to put in a port to allow me to get the sodium bicarbonate treatment.
Honestly I never really considered them saying "no", but at the same time I can not believe they are willing to do this. I can not say enough about the team of doctors I am surrounded by. I have heard so many cancer patient's stories where their "conventional" doctors would threaten them or quit seeing them, etc. if they opted not to go along with their "protocols." I have been blessed with a team that is willing to take some chances, do some things outside the box, and ultimately believe in me and listen to what I have to say about my health. They certainly do not always believe or understand some of the things that I want to do, but they are always willing to listen and help where they can. Over four years, I think they have gotten to know me...and realize when I set my mind to something, it will get done.
I'm excited to get started again. The procedure is not set, but I assume it will be next week. I'm having some issues getting my hands on the sodium bicarbonate here in the States, but this wouldn't be fun if I didn't have something to deal with. I'm confident that I'll wear someone down enough to get me what I need so I'll be ready next week.
Feeling better each day. I think Crystal and I are a little tired overall, but other than that are doing well. The kids continue to run circles around us, which is perfectly fine.
I'll keep everyone updated in the next few days.
Thanks, as always, for all of your support....
Tony
Wednesday, July 30, 2008
Sunday, July 27, 2008
Decision time
Starting to feel like myself again today. The pain in my chest is nearly gone (haven't had medication since Thursday night) and although I'm a little sore and emotionally drained from the past week and a half, I believe it's time to move on. I'm a bit more well rested too as you will probably see from the length of this post.
Arterial gram was relatively harmless. Worst part was laying flat on my back for 6 hours. You don't think that is very hard until you have to do it. If you're bored some day, give it a try... We did have some discoveries during the procedure though, as always, some positive and others a little disappointing.
Bad part is my hepatic artery pump has clearly been ruled out in giving me liver directed therapy. Basically, from the past surgeries and chemo intake I don't have clear flow to my liver. We now are pretty certain that the chest pains were from me forcing sodium bicarbonate into an area where it didn't have any place to go. This probably caused not only a reflux situation, but really irritated the arteries, which probably became inflamed which in turn caused my pain.
Good part is some people are born with one auxiliary hepatic artery that is connected to the liver from a different direction. Thankfully I am one of those people, so I do have another access point to get what I need into my liver. They can access that artery through my groin or under my arm and we can deliver what we need to the liver. That was good news, so my thought process immediately was that I can have someone put another port in and I can do the sodium bicarbonate treatment here in the states for the next 2 months.
Of course it's not that easy--this wouldn't be fun if we didn't have some sort of roadblock to deal with. IU Med Center is currently performing radiation treatment with these little "beads." They inject them through the groin so they get to your liver, lodge themselves in the tumors, and do their thing. Supposedly they have had good success, it's not very invasive, and apparently doesn't cause much pain or damage in or around the liver. Why am I telling you this? Because this is what the cancer center does and wants to do with me. Not that I would never consider this as an option, but right now I am to far involved with the sodium bicarbonate which is a natural substance that I am certain will not cause me any harm and at the same time not sure I'm buying everything they are selling to me. There was a young lady (younger than me) that I met a couple years ago that past away recently of colon cancer and I believe she had this treatment. I could be wrong, but I don't think it was as easy for her as told by the doctors.
So the dilemma becomes how do I get a port? My surgeon has said it will be a difficult "sell" to get a radiologist to give me a arterial port when in their mind there is no reason for it. They don't have anything against the sodium bicarbonate treatment, but don't have the all important studies to prove that it is effective ( I told them I would be a good start...). She sent me home Saturday charged with making a decision on what I want to do. Obviously everyone at IU Med is wanting me to do the "beads", but I see this as one more example of following my heart and fighting for what I believe. My decision that I will be sending my surgeon is that...I want a port. If they don't give me one, I will find someone that will---either locally (which is ideal) or back in Italy (maybe I'll get to see the Vatican after all). I don't have time to waste though, so my main goal this week will be getting this done somewhere.
Two caveats to the story. One is that this auxiliary artery is my last chance for liver directed therapy. Although Dr. Simoncini has already confirmed it does no harm to my arteries (I wrote him an e-mail two days ago) nor does my surgeon believe it would do any harm, they are using the old scare tactic of---if you blow this artery with sodium bicarb, you blow your opportunity for future liver directed therapy. I appreciate their medical advice, and realize anything can happen, but still feel very confident that I wouldn't have any problems.
Secondly, I spoke in my previous post that surgery may be an option to get rid of the biggest tumor in my liver. Problem is if we do surgery, I lose my auxiliary artery, thus losing the ability to perform any liver directed treatment. So time is of the essence in making a move as quickly as possible.
So now you're caught up again...looking forward to another adventurous week. As always, I appreciate all of your prayers and support.
Love,
Tony
Arterial gram was relatively harmless. Worst part was laying flat on my back for 6 hours. You don't think that is very hard until you have to do it. If you're bored some day, give it a try... We did have some discoveries during the procedure though, as always, some positive and others a little disappointing.
Bad part is my hepatic artery pump has clearly been ruled out in giving me liver directed therapy. Basically, from the past surgeries and chemo intake I don't have clear flow to my liver. We now are pretty certain that the chest pains were from me forcing sodium bicarbonate into an area where it didn't have any place to go. This probably caused not only a reflux situation, but really irritated the arteries, which probably became inflamed which in turn caused my pain.
Good part is some people are born with one auxiliary hepatic artery that is connected to the liver from a different direction. Thankfully I am one of those people, so I do have another access point to get what I need into my liver. They can access that artery through my groin or under my arm and we can deliver what we need to the liver. That was good news, so my thought process immediately was that I can have someone put another port in and I can do the sodium bicarbonate treatment here in the states for the next 2 months.
Of course it's not that easy--this wouldn't be fun if we didn't have some sort of roadblock to deal with. IU Med Center is currently performing radiation treatment with these little "beads." They inject them through the groin so they get to your liver, lodge themselves in the tumors, and do their thing. Supposedly they have had good success, it's not very invasive, and apparently doesn't cause much pain or damage in or around the liver. Why am I telling you this? Because this is what the cancer center does and wants to do with me. Not that I would never consider this as an option, but right now I am to far involved with the sodium bicarbonate which is a natural substance that I am certain will not cause me any harm and at the same time not sure I'm buying everything they are selling to me. There was a young lady (younger than me) that I met a couple years ago that past away recently of colon cancer and I believe she had this treatment. I could be wrong, but I don't think it was as easy for her as told by the doctors.
So the dilemma becomes how do I get a port? My surgeon has said it will be a difficult "sell" to get a radiologist to give me a arterial port when in their mind there is no reason for it. They don't have anything against the sodium bicarbonate treatment, but don't have the all important studies to prove that it is effective ( I told them I would be a good start...). She sent me home Saturday charged with making a decision on what I want to do. Obviously everyone at IU Med is wanting me to do the "beads", but I see this as one more example of following my heart and fighting for what I believe. My decision that I will be sending my surgeon is that...I want a port. If they don't give me one, I will find someone that will---either locally (which is ideal) or back in Italy (maybe I'll get to see the Vatican after all). I don't have time to waste though, so my main goal this week will be getting this done somewhere.
Two caveats to the story. One is that this auxiliary artery is my last chance for liver directed therapy. Although Dr. Simoncini has already confirmed it does no harm to my arteries (I wrote him an e-mail two days ago) nor does my surgeon believe it would do any harm, they are using the old scare tactic of---if you blow this artery with sodium bicarb, you blow your opportunity for future liver directed therapy. I appreciate their medical advice, and realize anything can happen, but still feel very confident that I wouldn't have any problems.
Secondly, I spoke in my previous post that surgery may be an option to get rid of the biggest tumor in my liver. Problem is if we do surgery, I lose my auxiliary artery, thus losing the ability to perform any liver directed treatment. So time is of the essence in making a move as quickly as possible.
So now you're caught up again...looking forward to another adventurous week. As always, I appreciate all of your prayers and support.
Love,
Tony
Thursday, July 24, 2008
Updated schedule and the kids
Wanted to write a note to keep everyone up to date on the schedule. Tomorrow I will have the arterialgram performed. The test is at 10:30 and we found out today that with the procedure comes a "free" overnight stay in the hospital. I can't say I'm exactly looking forward to it, but at the same time I'm hoping we will get some valuable answers that will allow us to make some important decisions.
My chest pain has subsided a little today. I'm still taking medication to help control the pain, but I'm spreading out the dosages in hopes to slowly get off the medication completely. For those of you that don't know me, I'm not a big fan of taking medication. Based on some of the things I've been through it puts me in a predicament. My naturopath has convinced me that not having pain is more important than taking medicine based on what your body produces when you are in pain. So I've been a compliant patient and will continue to swallow the pills if it means giving me relief.
We'll keep everyone updated on test results and possible next steps in the next few days.
Many of you have asked about our kids. William (3) is doing fine and pretty much goes with the flow. He's a happy and independent kid that I'm sure isn't aware of much that is going on right now. You give him some snacks, toys, maybe a computer game or good movie surrounded by people who love him and he's as content as can be.
Ashley (6) was having a really difficult time with my situation before Crystal and I left for Rome. We have told her what is going on with me and why we are doing the things we are doing. She did great while we were in Rome and since we have been home has really turned a corner. She is a sensitive child, with a deep rooted connection to her father. I know no matter what we tell her she can still feel some of the emotions I do. I wish she didn't have these "burdens" at age 6, but at the same time I know she is ok and she, like William, is surrounded by people that love her.
Special thanks to those who took care of her while we were in Rome, especially one Mrs. Terri Park. Terri is Ashley's school counselor and has become a big part of her life. She was with Ashley almost every day while we were gone. Ashley trusts her, believes in her and loves being around her. I know Terri has made a big difference in Ashley's life and has played a big part in helping her get through her anxiety. She has done this out of the kindness of her heart and we are forever grateful for her. She's one more example of the good in this world and the wonderful support system we have through this journey.
More updates to come...
Love,
Tony
My chest pain has subsided a little today. I'm still taking medication to help control the pain, but I'm spreading out the dosages in hopes to slowly get off the medication completely. For those of you that don't know me, I'm not a big fan of taking medication. Based on some of the things I've been through it puts me in a predicament. My naturopath has convinced me that not having pain is more important than taking medicine based on what your body produces when you are in pain. So I've been a compliant patient and will continue to swallow the pills if it means giving me relief.
We'll keep everyone updated on test results and possible next steps in the next few days.
Many of you have asked about our kids. William (3) is doing fine and pretty much goes with the flow. He's a happy and independent kid that I'm sure isn't aware of much that is going on right now. You give him some snacks, toys, maybe a computer game or good movie surrounded by people who love him and he's as content as can be.
Ashley (6) was having a really difficult time with my situation before Crystal and I left for Rome. We have told her what is going on with me and why we are doing the things we are doing. She did great while we were in Rome and since we have been home has really turned a corner. She is a sensitive child, with a deep rooted connection to her father. I know no matter what we tell her she can still feel some of the emotions I do. I wish she didn't have these "burdens" at age 6, but at the same time I know she is ok and she, like William, is surrounded by people that love her.
Special thanks to those who took care of her while we were in Rome, especially one Mrs. Terri Park. Terri is Ashley's school counselor and has become a big part of her life. She was with Ashley almost every day while we were gone. Ashley trusts her, believes in her and loves being around her. I know Terri has made a big difference in Ashley's life and has played a big part in helping her get through her anxiety. She has done this out of the kindness of her heart and we are forever grateful for her. She's one more example of the good in this world and the wonderful support system we have through this journey.
More updates to come...
Love,
Tony
Wednesday, July 23, 2008
Where do I begin?
There has been a reason for no journal entries the last few days. Some of you reading this may know, others may not. I will warn you in advance there is much for me to catch everyone up on so this entry will not be for the weary reader. Crystal's plea of keeping these short is going on deaf ears tonight.
First of all..it is Wednesday night and we are home in Noblesville. I have spent the last two days as an "in-patient" at the IU med center. We got home tonight and I finally have time (and energy) to write a post. Based on my last entry that may come as a complete surprise to most anyone...including Crystal and I.
Here is what happened....
After a long, but successful, day with the sodium bicarbonate on Saturday, Crystal and I woke up feeling great on Sunday. We did some sight seeing in Rome and enjoyed the day. Dr. Simoncini met us at our hotel at 5:00 to start I what thought would be another great treatment. We did the same as before, the dr. started the process and left me with nurse Crystal thinking that we would be in for another slow night of injecting sodium bicarbonate. I had pain as before. We would inject the fluid, I would raise my hand to stop, wait a few seconds and repeat the process.
After about 150 mls the problem started. The pain would not go away. We waited 15 mins, 30 mins, 1 hour, 1 1/2 hours doing everything I could to force any amount of fluid into my pump. The pain was bad--it was in my chest. I can only describe it as the worst heart burn you have ever had that won't go away. Reluctantly, I told Crystal I couldn't go on. We pulled the needle and we went to a quick dinner very disappointed.
We tried to pick ourselves up that night thinking the pain would subside by the morning. We would go to Vatican City in the morning and try again the next day. No big deal. I barely slept that night, the pain was terrible and there was no way I could sleep. Crystal woke up around 7 am and saw I was struggling. I knew there was no way I could do another treatment that day nor did I feel like site seeing. Something wasn't right and I knew I needed to get home. I couldn't risk having a major medical issue and have to go to an Italian hospital. We jumped on a plan at 10:15 and flew home.
The flight was long and painful. Not a good feeling being over the Atlantic ocean with major chest pains. Twenty-two hours later we landed safely in Indianapolis, happy to be close to family and medical help. I made it through the night with the help of a little aspirin, woke up early and headed to the IU Medical Center.
The hospital admitted me based on my symptoms and began running test on me. The good news was they gave me medication that nearly eliminated all the pain. The bad news was the day was slow. We still didn't have answers at 8 pm. If you don't know Crystal she is not afraid to "get an answer." They had her number that night because we couldn't get answers from anyone. We were tired, disappointed about the treatment, disappointed in the service at IU and obviously concerned about what was going on.
Doctors came in around 9 and said that all the test came back ok. There was no evidence of an embolism, heart trouble, liver function, etc. That was good, but unfortunately they still couldn't tell me what was causing my pain. They planned on doing an IR procedure where they check the flow of my arteries under "conscious anesthesia". They hoped to do that procedure today, but were to busy in the IR to get me in. As of now I am home with a few bottles of pain killers hoping to control the pain until we figure it out or it goes away. We still think it may be a "reflux" type of situation where the sodium bicarbonate is irritating the walls of arteries and it may just have to work it's way out. Time will tell.
In all of this chaos, we did get some good news. My tumors are stable and there is evidence that we may have even shrunk a couple of them. That is exciting news based on the trend I have been having and considering it's been four months since my last scan. We won't speculate just yet on how this may have happened, but needed some good news to help alleviate the disappointment of the last few days.
From here we have some options. We need to see what kind of flow we are getting to the tumors with the arterialgram (IR procedure). Once we have that info, we can either continue the sodium bicarbonate treatment here in the states (if the flow is good) or the latest news--resect the biggest tumor in my liver. The surgeon said she is willing to do this and based on the location is one of the "simplest" surgical procedures she performs. Again, exciting news that was not given to us as an option before. My surgeon believes that based on my age, my overall health, and the fact that there are only a few "large tumors" it would be beneficial to do everything I can to resect the large tumors and "deal" with the smaller ones that obviously have not grow very quickly over the past four years. This would eliminate any life threatening tumors at this point and "buy me time" to find other treatments and / or wait for new therapies to be released. We'll see what happens after the arterialgram.
We are home...have gotten over our disappointment and are ready for the next chapter. It's very difficult to be disappointed when coming home to two children who melt your heart. They did great while we were gone and we are so proud of them.
Thanks to all of you that continue to keep us in your prayers and continue to support us through these adventures. We strongly believe everything happens for a reason and once again are where we need to be.
With love,
Tony
First of all..it is Wednesday night and we are home in Noblesville. I have spent the last two days as an "in-patient" at the IU med center. We got home tonight and I finally have time (and energy) to write a post. Based on my last entry that may come as a complete surprise to most anyone...including Crystal and I.
Here is what happened....
After a long, but successful, day with the sodium bicarbonate on Saturday, Crystal and I woke up feeling great on Sunday. We did some sight seeing in Rome and enjoyed the day. Dr. Simoncini met us at our hotel at 5:00 to start I what thought would be another great treatment. We did the same as before, the dr. started the process and left me with nurse Crystal thinking that we would be in for another slow night of injecting sodium bicarbonate. I had pain as before. We would inject the fluid, I would raise my hand to stop, wait a few seconds and repeat the process.
After about 150 mls the problem started. The pain would not go away. We waited 15 mins, 30 mins, 1 hour, 1 1/2 hours doing everything I could to force any amount of fluid into my pump. The pain was bad--it was in my chest. I can only describe it as the worst heart burn you have ever had that won't go away. Reluctantly, I told Crystal I couldn't go on. We pulled the needle and we went to a quick dinner very disappointed.
We tried to pick ourselves up that night thinking the pain would subside by the morning. We would go to Vatican City in the morning and try again the next day. No big deal. I barely slept that night, the pain was terrible and there was no way I could sleep. Crystal woke up around 7 am and saw I was struggling. I knew there was no way I could do another treatment that day nor did I feel like site seeing. Something wasn't right and I knew I needed to get home. I couldn't risk having a major medical issue and have to go to an Italian hospital. We jumped on a plan at 10:15 and flew home.
The flight was long and painful. Not a good feeling being over the Atlantic ocean with major chest pains. Twenty-two hours later we landed safely in Indianapolis, happy to be close to family and medical help. I made it through the night with the help of a little aspirin, woke up early and headed to the IU Medical Center.
The hospital admitted me based on my symptoms and began running test on me. The good news was they gave me medication that nearly eliminated all the pain. The bad news was the day was slow. We still didn't have answers at 8 pm. If you don't know Crystal she is not afraid to "get an answer." They had her number that night because we couldn't get answers from anyone. We were tired, disappointed about the treatment, disappointed in the service at IU and obviously concerned about what was going on.
Doctors came in around 9 and said that all the test came back ok. There was no evidence of an embolism, heart trouble, liver function, etc. That was good, but unfortunately they still couldn't tell me what was causing my pain. They planned on doing an IR procedure where they check the flow of my arteries under "conscious anesthesia". They hoped to do that procedure today, but were to busy in the IR to get me in. As of now I am home with a few bottles of pain killers hoping to control the pain until we figure it out or it goes away. We still think it may be a "reflux" type of situation where the sodium bicarbonate is irritating the walls of arteries and it may just have to work it's way out. Time will tell.
In all of this chaos, we did get some good news. My tumors are stable and there is evidence that we may have even shrunk a couple of them. That is exciting news based on the trend I have been having and considering it's been four months since my last scan. We won't speculate just yet on how this may have happened, but needed some good news to help alleviate the disappointment of the last few days.
From here we have some options. We need to see what kind of flow we are getting to the tumors with the arterialgram (IR procedure). Once we have that info, we can either continue the sodium bicarbonate treatment here in the states (if the flow is good) or the latest news--resect the biggest tumor in my liver. The surgeon said she is willing to do this and based on the location is one of the "simplest" surgical procedures she performs. Again, exciting news that was not given to us as an option before. My surgeon believes that based on my age, my overall health, and the fact that there are only a few "large tumors" it would be beneficial to do everything I can to resect the large tumors and "deal" with the smaller ones that obviously have not grow very quickly over the past four years. This would eliminate any life threatening tumors at this point and "buy me time" to find other treatments and / or wait for new therapies to be released. We'll see what happens after the arterialgram.
We are home...have gotten over our disappointment and are ready for the next chapter. It's very difficult to be disappointed when coming home to two children who melt your heart. They did great while we were gone and we are so proud of them.
Thanks to all of you that continue to keep us in your prayers and continue to support us through these adventures. We strongly believe everything happens for a reason and once again are where we need to be.
With love,
Tony
Saturday, July 19, 2008
Day 4 in Rome..not a vacation
Day four has come and gone here in Rome. Not much news today as most of the day was spent in our new hotel. We had to switch hotels today (planned). Our initial plan was to wake up early and see some sites before treatment today at 4 pm. Unfortunately, Crystal and I overslept so we woke up and "moved." By the time we were settled into our new nest and ate lunch (Italians take their meals seriously...anything under an hour is fast food) our doctor was ready.
Treatment started at 4:45 and lasted until 9:15. The doctor left around 5:45 and nurse Crystal took over. Bless her heart she stayed with me while we pushed sodium bicarbonate 1 cc at a time into my port. We found today that if we go slow I don't have as much pain. Good news is there is less pain, bad news is it takes 41/2 hours. We are hopeful that it will get better over time. Regardless, my body is tolerating the treatment and we will take as long as needed to get it done.
We went to dinner after treatment and celebrated the long day. My doctor is not convinced that diet is an issue with cancer, so I stepped out of my protective shell for a night and ate bread, pasta and a DESSERT!!! Still no alcohol, which is painful here in Italy since they have before and after cocktails at every meal. Dr. Simoncini did agree alcohol was too harsh on the liver.
We must be getting better with the language or acting the part because we passed for Italians twice today. Still very little english where we are staying. After a few sentences though we go to hand gestures or pen and paper, but we sense we are getting better.
Overall not the most exciting day in Rome, but more progress. We'll keep you posted.
Love,
Tony
Treatment started at 4:45 and lasted until 9:15. The doctor left around 5:45 and nurse Crystal took over. Bless her heart she stayed with me while we pushed sodium bicarbonate 1 cc at a time into my port. We found today that if we go slow I don't have as much pain. Good news is there is less pain, bad news is it takes 41/2 hours. We are hopeful that it will get better over time. Regardless, my body is tolerating the treatment and we will take as long as needed to get it done.
We went to dinner after treatment and celebrated the long day. My doctor is not convinced that diet is an issue with cancer, so I stepped out of my protective shell for a night and ate bread, pasta and a DESSERT!!! Still no alcohol, which is painful here in Italy since they have before and after cocktails at every meal. Dr. Simoncini did agree alcohol was too harsh on the liver.
We must be getting better with the language or acting the part because we passed for Italians twice today. Still very little english where we are staying. After a few sentences though we go to hand gestures or pen and paper, but we sense we are getting better.
Overall not the most exciting day in Rome, but more progress. We'll keep you posted.
Love,
Tony
Friday, July 18, 2008
Day 3 in Rome...progress
I don't have much time tonight because my internet minutes are fading fast. Crystal tells me I need to be more brief anyway so here's my chance. I've warned from the very beginning that I can be long winded so no apologies from me.
I told Crystal tonight that this will be a day I won't ever forget. Today may have been one of the most interesting and different days I've ever been involved in. We went from shopping on streets that had stores like Gucci, Valentino, Dolci, Fendi, etc., (no purchases of course), ate lunch in front of the Pantheon, travelled to the southern tip of Rome (the suburbs) and spent three hours in a hospital, went for a "snack" in a cafe where no there was no english, had sodium bicarbonate treatment on my hotel bed, and went to a very nice Italian dinner in the evening (again--no english). I'll bet anyone out there they can't match that day!
As far as treatment...my doctor wanted to make sure the port was working so the radiologist saw me today and injected dye under flouroscopy to verify everything was working. He convinced my doctor he should use my port, which he did. Unfortunately when injecting the sodium bicarbonate into my port it creates painful pressure into my chest. It's not the sodium bicarbonate that creates the pressure (the dye did the same thing), it's apparently the way my arteries are reacting to fluid when using my pump. It's a little bit of a mystery, but we're getting through it. We were able to do the treatment, but it is slow and a little painful at times and makes me a tad nauseous. In order to make sure everything is ok, we only did about 1/4 of the treatment tonight. We are going to try to increase it each day. After treatment I am fine...no pain, no side effects---just a little dicey during.
Good news is we spent about 4 hours with the doctor today and really got to know him. He his a great man, very compassionate about what he is doing and really cares about his patients. He gets calls from all over the country throughout the day. I could write a long, long time about him, but will spare everyone the details for now.
We are going to do treatment again tomorrow at 4:00. We hope that it gets better each day. We change hotels tomorrow, so hoping that we have continued access to e-mail. If I don't journal it is because the hotel we are going to does not have internet access. Communications here (both phone and internet) has been a learning experience.
More updates soon...
Love,
Tony
I told Crystal tonight that this will be a day I won't ever forget. Today may have been one of the most interesting and different days I've ever been involved in. We went from shopping on streets that had stores like Gucci, Valentino, Dolci, Fendi, etc., (no purchases of course), ate lunch in front of the Pantheon, travelled to the southern tip of Rome (the suburbs) and spent three hours in a hospital, went for a "snack" in a cafe where no there was no english, had sodium bicarbonate treatment on my hotel bed, and went to a very nice Italian dinner in the evening (again--no english). I'll bet anyone out there they can't match that day!
As far as treatment...my doctor wanted to make sure the port was working so the radiologist saw me today and injected dye under flouroscopy to verify everything was working. He convinced my doctor he should use my port, which he did. Unfortunately when injecting the sodium bicarbonate into my port it creates painful pressure into my chest. It's not the sodium bicarbonate that creates the pressure (the dye did the same thing), it's apparently the way my arteries are reacting to fluid when using my pump. It's a little bit of a mystery, but we're getting through it. We were able to do the treatment, but it is slow and a little painful at times and makes me a tad nauseous. In order to make sure everything is ok, we only did about 1/4 of the treatment tonight. We are going to try to increase it each day. After treatment I am fine...no pain, no side effects---just a little dicey during.
Good news is we spent about 4 hours with the doctor today and really got to know him. He his a great man, very compassionate about what he is doing and really cares about his patients. He gets calls from all over the country throughout the day. I could write a long, long time about him, but will spare everyone the details for now.
We are going to do treatment again tomorrow at 4:00. We hope that it gets better each day. We change hotels tomorrow, so hoping that we have continued access to e-mail. If I don't journal it is because the hotel we are going to does not have internet access. Communications here (both phone and internet) has been a learning experience.
More updates soon...
Love,
Tony
Thursday, July 17, 2008
Day 2 in Rome
Quite a few ups and downs today in Rome. We woke up after a great nights sleep, went to breakfast in the hotel (complimentary) and waited for the doctor to come.
UP :))) He came at 1:30 and we talked for about 30 mins about my situation. It was great to finally meet him and talk to him in person. His english was much better in person. After we talked he said he would return in two hours and we would begin the procedures (he didn't initally bring his supplies because he needed to make sure, in his terms, I was not a "spy"). Crystal and I hadn't left the hotel yet, so we walked to a local cafe for lunch and got ready for what we thought would be a great day.
DOWN :(((( We got back to the hotel and the doctor came around 4:00. I laid on the bed, he had all of his supplies ready. He started putting fluid into the catheter and it started running down the side of my abdomen. We got through the bandages I had been wearing for a few days and found that the needle had come out. Talk about a kick in the gut. The doctor didn't know anything about this pump so he wouldn't even consider poking a needle into the reservoir he can't see under my skin. I am about as squimmish of a person as anyone and I came pretty close to poking myself. I came all this way, had this doctor in front of me and no current way to get the treatment.
He tried to call his radiologist to see when he could look at me to either access my current port or surgically insert another port. The moment didn't get much better--the radiologist did not answer. The doctor left and said he would call us as soon as he heard from the radiologist. We were stuck in the hotel after receiving no treatment wondering what we were going to do.
Fortunately the doctor called after about 30 minutes. More bad news...the radiologist was booked for the day and wasn't sure if he would be able to get us in until Monday. He was going to try for tomorrow, but it didn't sound promising. Needless to say...this was not in our plans. After a little bit of sadness and anger, Crystal and I decided there was nothing we could do about it at the moment, so we set off to the center of Rome to try to have a good evening.
Good news is we did have a good evening, bad news is we still don't have a very good feel on what to do. Regardless we are going to have to perform a portion of the protcol when I get home. I am confident that the doctor will provide me what I need, the question becomes do we stay in Rome to start his protocol or do we jump on a plane with the supplies and try to do this at home. We have decided to talk to the doctor tomorrow. We also have a call into my surgeon at IU Med to get her opinion. After we get all of the information we need we will be able to make a logical decision (hopefully tomorrow).
Wish I had better news...we are bummed, but hanging in there. I've decided to buy a scooter when we get home since everyone here owns one. Crystal is looking forward to riding on the back with her dress on. We have formulated an opinion on Rome today after our evening. Rome is great--it has a great feel, everyone seems happy, relaxed and just enjoying life. We needed a little of that tonight, so felt like we were in the right place regardless of the situation.
More updates tomorrow...
Love ,
Tony
UP :))) He came at 1:30 and we talked for about 30 mins about my situation. It was great to finally meet him and talk to him in person. His english was much better in person. After we talked he said he would return in two hours and we would begin the procedures (he didn't initally bring his supplies because he needed to make sure, in his terms, I was not a "spy"). Crystal and I hadn't left the hotel yet, so we walked to a local cafe for lunch and got ready for what we thought would be a great day.
DOWN :(((( We got back to the hotel and the doctor came around 4:00. I laid on the bed, he had all of his supplies ready. He started putting fluid into the catheter and it started running down the side of my abdomen. We got through the bandages I had been wearing for a few days and found that the needle had come out. Talk about a kick in the gut. The doctor didn't know anything about this pump so he wouldn't even consider poking a needle into the reservoir he can't see under my skin. I am about as squimmish of a person as anyone and I came pretty close to poking myself. I came all this way, had this doctor in front of me and no current way to get the treatment.
He tried to call his radiologist to see when he could look at me to either access my current port or surgically insert another port. The moment didn't get much better--the radiologist did not answer. The doctor left and said he would call us as soon as he heard from the radiologist. We were stuck in the hotel after receiving no treatment wondering what we were going to do.
Fortunately the doctor called after about 30 minutes. More bad news...the radiologist was booked for the day and wasn't sure if he would be able to get us in until Monday. He was going to try for tomorrow, but it didn't sound promising. Needless to say...this was not in our plans. After a little bit of sadness and anger, Crystal and I decided there was nothing we could do about it at the moment, so we set off to the center of Rome to try to have a good evening.
Good news is we did have a good evening, bad news is we still don't have a very good feel on what to do. Regardless we are going to have to perform a portion of the protcol when I get home. I am confident that the doctor will provide me what I need, the question becomes do we stay in Rome to start his protocol or do we jump on a plane with the supplies and try to do this at home. We have decided to talk to the doctor tomorrow. We also have a call into my surgeon at IU Med to get her opinion. After we get all of the information we need we will be able to make a logical decision (hopefully tomorrow).
Wish I had better news...we are bummed, but hanging in there. I've decided to buy a scooter when we get home since everyone here owns one. Crystal is looking forward to riding on the back with her dress on. We have formulated an opinion on Rome today after our evening. Rome is great--it has a great feel, everyone seems happy, relaxed and just enjoying life. We needed a little of that tonight, so felt like we were in the right place regardless of the situation.
More updates tomorrow...
Love ,
Tony
 | Post Options | Labels for this post: e.g. scooters, vacation, fall | |
All Labels: | |||
Wednesday, July 16, 2008
We made it to Rome.
Crystal and I made it to Rome today. Our day today was fairly uneventful. We spent most of the day trying to figure out the "lay of the land", how to communicate to people, and how to use a phone. Throw in a 3 hour nap once we got here and you have a full day.
We're still very tired tonight, didn't get much sleep on the flight over so we're ready for bed tonight. We're six hours ahead of the US, so it will be nice to go to sleep at 6 pm tonight (US time).
We are in northern Rome and didn't venture to far from our hotel. The people here speak ok English, but not as good as I thought. Many of the people we ran into today didn't speak english at all. I think once we get into the center of the city we will have better communication. Good news is we are out of the touristy areas right now, bad news is we are out of the touristy areas. We got to see some nice shops and eat lunch and dinner at authentic Italian cafes / restaurants. So far so good, all the people are very nice and helpful. I'm sure we'll formulate a positive or negative opinion of the country soon, but no complaints thus far.
I did get a chance to call my doctor today and he is coming to our hotel tomorrow between noon and 3. We were hoping to see him in the morning, but I'm just anxious to see him so any time will work. So far the "leap of faith" thing is working. I'm sure tomorrow I will have more news on what I am doing and what I can expect the rest of the time we are here.
More updates tomorrow...
Tony
We're still very tired tonight, didn't get much sleep on the flight over so we're ready for bed tonight. We're six hours ahead of the US, so it will be nice to go to sleep at 6 pm tonight (US time).
We are in northern Rome and didn't venture to far from our hotel. The people here speak ok English, but not as good as I thought. Many of the people we ran into today didn't speak english at all. I think once we get into the center of the city we will have better communication. Good news is we are out of the touristy areas right now, bad news is we are out of the touristy areas. We got to see some nice shops and eat lunch and dinner at authentic Italian cafes / restaurants. So far so good, all the people are very nice and helpful. I'm sure we'll formulate a positive or negative opinion of the country soon, but no complaints thus far.
I did get a chance to call my doctor today and he is coming to our hotel tomorrow between noon and 3. We were hoping to see him in the morning, but I'm just anxious to see him so any time will work. So far the "leap of faith" thing is working. I'm sure tomorrow I will have more news on what I am doing and what I can expect the rest of the time we are here.
More updates tomorrow...
Tony
Sunday, July 6, 2008
Quick clarification note
I regret that I didn't make note of the month Crystal and I will be leaving for Rome on the last journal entry. To clarify...we will be leaving July 15th and coming home July 25th. I can't believe it's almost a week away! When I first made contact with the doctor in Rome he said I could come see him before July 5th of after July 16th. Basically I couldn't get everything in order before July 5th so we told him we would see him July 17th.
The sooner the better...I feel a little in limbo right now. There was a time when I was going through chemo where it was almost more difficult to be off of chemo than being on chemo. I've learned cancer is a very mental disease, psychologically if you are off treatment you are constantly concerned with what the tumors are doing. I work hard now not to think of the "what ifs", but I must confess that in the past I've made some calls to my oncologist about crazy aches and pains while off of chemo. Needless to say I'm excited to get started on "treatment", although I'm still doing my natural therapies two times a week.
Tonight I must add one of many "thank yous" that I am sure will be in this journal. My neighbors, Joe and Dena, hold a prayer group on Sunday nights at their house. Dena knocked on our door tonight and asked if I would come down for a prayer. I'm touched by these moments with a group of people that only know my story and are willing to reach out to me with their support. Also the other day I had a door to door salesman come to the door selling books. We talked a little and in conversation I briefly mentioned to him what I was going through. He asked to pray with me before he left, which I don't think is a normal sales tactic. I'm sure my other neighbors didn't appreciate this guy as much as me, but at the moment, for me, was something I really appreciated.
I am no where near having the words to express my appreciation and support from everyone. The personal e-mails, the e-mails to Crystal, the phone calls, the guestbook entries, and prayers are overwhelming. I want to be clear that it is a "good" overwhelming. I'm sure I'll say this a thousand times in this journal, but I always knew I had a strong support system, but had no idea how many people are rooting for me. No words (at least tonight), except a simple "thank you".
With love...Tony
The sooner the better...I feel a little in limbo right now. There was a time when I was going through chemo where it was almost more difficult to be off of chemo than being on chemo. I've learned cancer is a very mental disease, psychologically if you are off treatment you are constantly concerned with what the tumors are doing. I work hard now not to think of the "what ifs", but I must confess that in the past I've made some calls to my oncologist about crazy aches and pains while off of chemo. Needless to say I'm excited to get started on "treatment", although I'm still doing my natural therapies two times a week.
Tonight I must add one of many "thank yous" that I am sure will be in this journal. My neighbors, Joe and Dena, hold a prayer group on Sunday nights at their house. Dena knocked on our door tonight and asked if I would come down for a prayer. I'm touched by these moments with a group of people that only know my story and are willing to reach out to me with their support. Also the other day I had a door to door salesman come to the door selling books. We talked a little and in conversation I briefly mentioned to him what I was going through. He asked to pray with me before he left, which I don't think is a normal sales tactic. I'm sure my other neighbors didn't appreciate this guy as much as me, but at the moment, for me, was something I really appreciated.
I am no where near having the words to express my appreciation and support from everyone. The personal e-mails, the e-mails to Crystal, the phone calls, the guestbook entries, and prayers are overwhelming. I want to be clear that it is a "good" overwhelming. I'm sure I'll say this a thousand times in this journal, but I always knew I had a strong support system, but had no idea how many people are rooting for me. No words (at least tonight), except a simple "thank you".
With love...Tony
Wednesday, July 2, 2008
We're officially going to Rome!
Last night we made it official...we're going to Rome. We really couldn't wait much longer to book a flight so the day came yesterday--go or no go. After weeks of research and hunting down this doctor I didn't even consider "no go."
I have to be honest, we're still a little anxious about the trip. We're excited about the procedure but still don't know what to expect. It's one of those times where you have to trust your instinct and be able to let go of being in control. Not easy to do, but I keep telling myself that I have to get in front of this doctor no matter what. I've been given an opportunity to do that so I don't want to pass it up.
The one outstanding issue is how this doctor is going to access me. I have two ports...both internal. One in my upper right arm I used for chemo and still use for my natural therapies. I tell everyone they should have a port--much better than getting poked in the veins and the best way to get your vitamins. Unfortunately the doctor in Italy can't use this port because it is a venous port and he needs an arterial port.
Luckily my other port is an arterial port. It is in my lower abdomen and is connected to my hepatic artery (the artery that goes directly into your liver). Initially we did not think we could use this port (the hepatic artery port) because it is "programmed" to release a certain amount of fluid each day into my liver (5cc). Perfectly good "program" for chemo (which I was using it for), but not so perfect for sodium bicarbonate (which is what the doctor in Italy will be using). I understand that he wants to deliver 500cc in 30 minutes.
I am working with my surgeon here in Indianapolis on a way to by-pass the programmed amount the pump will allow. We think we can do this through a side access in the pump. My surgeon has agreed to access my port and leave an external catheter so the only thing the doctor in Italy will have to do is "hook" me up. I'll know next week. Good news is I probably wouldn't have to have any "surgical" procedures in Italy, bad news is I would have an uncomfortable catheter to deal with for 10 days. Hopefully I'll have my choice and I vote for the latter of the two.
So the trip is scheduled for the 15th and we will return on the 24th. Two days of travel and eight straight days with the doctor. The doctor is telling me the treatments may make me tired and / or thirsty, but other than that I should be ok. I know we are going to Rome to get medical treatment, but hopeful that I will feel up to seeing some of the city. It's not every day that you get a chance to go to Rome. Would be nice to hang out with the Pope for a day.
I want to quickly thank everyone again for the outpouring of support. I always knew I had a strong support system, but I'm now being reminded on how lucky I really am. I wouldn't be where I am without all of you.
I'll try to keep everyone updated. If you haven't noticed thus far I'm not afraid to type so if you like succinct journal entries you're in the wrong place. Talk to you soon.
With love....Tony
I have to be honest, we're still a little anxious about the trip. We're excited about the procedure but still don't know what to expect. It's one of those times where you have to trust your instinct and be able to let go of being in control. Not easy to do, but I keep telling myself that I have to get in front of this doctor no matter what. I've been given an opportunity to do that so I don't want to pass it up.
The one outstanding issue is how this doctor is going to access me. I have two ports...both internal. One in my upper right arm I used for chemo and still use for my natural therapies. I tell everyone they should have a port--much better than getting poked in the veins and the best way to get your vitamins. Unfortunately the doctor in Italy can't use this port because it is a venous port and he needs an arterial port.
Luckily my other port is an arterial port. It is in my lower abdomen and is connected to my hepatic artery (the artery that goes directly into your liver). Initially we did not think we could use this port (the hepatic artery port) because it is "programmed" to release a certain amount of fluid each day into my liver (5cc). Perfectly good "program" for chemo (which I was using it for), but not so perfect for sodium bicarbonate (which is what the doctor in Italy will be using). I understand that he wants to deliver 500cc in 30 minutes.
I am working with my surgeon here in Indianapolis on a way to by-pass the programmed amount the pump will allow. We think we can do this through a side access in the pump. My surgeon has agreed to access my port and leave an external catheter so the only thing the doctor in Italy will have to do is "hook" me up. I'll know next week. Good news is I probably wouldn't have to have any "surgical" procedures in Italy, bad news is I would have an uncomfortable catheter to deal with for 10 days. Hopefully I'll have my choice and I vote for the latter of the two.
So the trip is scheduled for the 15th and we will return on the 24th. Two days of travel and eight straight days with the doctor. The doctor is telling me the treatments may make me tired and / or thirsty, but other than that I should be ok. I know we are going to Rome to get medical treatment, but hopeful that I will feel up to seeing some of the city. It's not every day that you get a chance to go to Rome. Would be nice to hang out with the Pope for a day.
I want to quickly thank everyone again for the outpouring of support. I always knew I had a strong support system, but I'm now being reminded on how lucky I really am. I wouldn't be where I am without all of you.
I'll try to keep everyone updated. If you haven't noticed thus far I'm not afraid to type so if you like succinct journal entries you're in the wrong place. Talk to you soon.
With love....Tony
Subscribe to:
Posts (Atom)
Posts
