Today was a tough one, not from a physical standpoint but from an emotional one. I knew the day was coming, but also didn’t think it would creep up on me so fast. I woke up at 5:30am this morning to start the process of sending Crystal back home to the kids and our life in Noblesville. At 7:30am we arrived at the Munich airport where I put Crystal on a plane while at the same time welcoming my aunt Betty to Germany. Obviously I was and am very happy to see my aunt, but seeing Crystal leave changes things and I will miss her dearly while riding out the rest of this stint in Germany. She continues to be the best partner possible and although I know our time away is not unreasonable I have never been without her in any aspect of this journey, so it will be different.
Sunday was a fairly typical day. We woke up early, went for therapy, rested, and went out to eat with a group of ten people to a very nice Italian restaurant. Food was great and the company was better. We couldn’t have asked for a better group to be surrounded by and we have all created a very unique bond in the short time we have been around each other. We will lose a few more back to their lives this week and I assume that will remain the same on the third week as well. Part of what we expected—a new “cast of characters” each week. As much as everyone wants to get home to their children, jobs, normal lives, etc, we are all very sad to see someone else leave. I find it difficult to explain and describe—you would need to actually live it. . I wouldn’t call it a vacation, but you are able to completely surrender yourself from the everyday stress and give your body a chance to relax and heal. As I have said before, there is not much to do, so you are forced to relax and heal. I’ve never seen Crystal relax like she did here. This was a very good healing experience for her too.
Aunt Betty arrived and we decided to rent a car for the week. Since I moved out of the Klinik into an apartment, a car became necessary. We struggled through finding the vehicle and the GPS system which was set to an Arabic language. We got a taste of bad traffic on the way home from the airport…the 40 minute ride to the airport was 2 hours on the way home.
I knew Betty was exhausted from the trip, but she wanted to go with me to the Klinik. We arrived, introduced her to the gang and got started as usual. Today they took literally about 15 vials of blood. This is the blood they will be sending off to create the vaccines I will get next week. Don’t ask me what they do, but they use your own blood to create these vaccines to help bolster your immune system. This is one of the things they were doing in Mexico and although I can’t talk very intelligently about it now, the concept is a fascinating one.
Dr. Jacob didn’t get back from her trip until we were ready to leave the Klinik. I didn’t want to stay long because I needed to get Betty some sleep. She was going on 24 hours of awake time—I know our first day last week was tiring so I wanted to get her back to the apartment so she could get a nap before dinner. Dr. Jacob told me to go home and we would talk tomorrow---I know she needed to catch up as well.
I spoke to Ashley and Will today before they went to school. They are very excited to see their mother tonight—especially Will. He’s had a little cold and Ashley has been very busy which I’m sure has made him miss his mom and dad a little more (not the nana isn’t doing a great job!). Crystal will be home before they go to bed tonight, so they have something to look forward to.
I have a schedule in mind for me this week, but want to speak with Dr. Jacob before I publish it. There are several reports we are waiting on that I hope I will get in the next day or two that will help dictate our next moves.
More updates to come…
Love,
Tony
Tuesday, October 14, 2008
Sunday, October 12, 2008
The move (Day 6 in Germany)
I would by no means say I feel bad, but yesterday I was little more run down than usual. Sleeping has not been easy for me here (not sure why) and you add the effects of the medication and you have a good combination to help slow me down.
The big news yesterday was that we moved out of the Klinik. One of the advantages of befriending people that have been here before is that they have tried different things and can recommend certain places and areas. After my IVs yesterday we went moved into a very nice and affordable apartment. We have a kitchen which helps cut down on some food expenses and it’s bright and cheery. There are many windows to help bring light into the rooms. The down side of the apartment is that we don’t have internet access or a phone. We will have to do all of our “interneting” when I am at the Klinik.
We went to the grocery store to get some breakfast food and snacks to hold us over for a few days and then went back to our apartment to unpack and settle in. Crystal is going home tomorrow and my aunt Betty is arriving, so I will be getting a car since we are a few miles away from the Klinik. We have friends driving us around now. We are closer to the center of town, so Crystal and I got out last night to walk around and find some restaurants. We ate at a Greek restaurant, not bad, but not great, went home and watched another movie before going to bed. We are now back at the Klinik getting my Sunday treatment.
Worst part about yesterday is we didn’t get to speak with the kids. We left the Klinik yesterday before they were awake, so didn’t get to check on them. We miss them so much---Crystal can’t wait to see them and I’m counting the days. That’s it for now…still going well. I’m already going into NFL football withdrawal.
More to come…
Love,
Tony
The big news yesterday was that we moved out of the Klinik. One of the advantages of befriending people that have been here before is that they have tried different things and can recommend certain places and areas. After my IVs yesterday we went moved into a very nice and affordable apartment. We have a kitchen which helps cut down on some food expenses and it’s bright and cheery. There are many windows to help bring light into the rooms. The down side of the apartment is that we don’t have internet access or a phone. We will have to do all of our “interneting” when I am at the Klinik.
We went to the grocery store to get some breakfast food and snacks to hold us over for a few days and then went back to our apartment to unpack and settle in. Crystal is going home tomorrow and my aunt Betty is arriving, so I will be getting a car since we are a few miles away from the Klinik. We have friends driving us around now. We are closer to the center of town, so Crystal and I got out last night to walk around and find some restaurants. We ate at a Greek restaurant, not bad, but not great, went home and watched another movie before going to bed. We are now back at the Klinik getting my Sunday treatment.
Worst part about yesterday is we didn’t get to speak with the kids. We left the Klinik yesterday before they were awake, so didn’t get to check on them. We miss them so much---Crystal can’t wait to see them and I’m counting the days. That’s it for now…still going well. I’m already going into NFL football withdrawal.
More to come…
Love,
Tony
Friday, October 10, 2008
Is this THE place? (Day 4 in Germany)
I was talking to the wife of a man you has neck cancer yesterday while he was sleeping. She knows our story and is aware of where we have been, what we have done and our research. We were talking about a variety of things and she said to me, (I'm using quotes, but these were not her exact words), "I'm not sure if you are completely convinced this is it for you". Meaning...this would be the last clinic I would go to because I'm convinced of the treatment here. Her comment caught me a little off guard, but it was an interesting thought. We have done many different things and researched many different places...partly due to the length of time I have been dealing with this (there is only one person here that has been surviving cancer longer than me) and partly due to the fact I knew I wouldn't survive this disease if I took a completely traditional route. I can poke holes in some of the things I have done in the past, but I can't change what I have done, so I continue to forward think and make decisions that feel "right" at the time.
I took a second after she made her comment and responded that after today's meeting with Dr. Friedrickson (I'll explain in a second) I'm feeling more and more confident that this could be the "last stop". As most of you know that follow my story, my journey is full of twists and turns--as hard as it is to make these big decision, it's also part of the fun. I went on to tell her that I don't think you ever close the door to other opportunities, but at the same time if I'm having success here then it would not make sense to go anywhere else either.
People should be impressed by this facility and the care and compassion of Dr. Jacob. I certainly am. She is taking a very thorough approach to this disease. She has a "cookie cutter" approach in some of the tests she runs and medicines she gives, but at the end of the day everyone becomes extremely unique in the care and treatment that they receive. I am now convinced that there is no way I could have done everything she is doing here in the States. I know that was a piece of advice I was given (that I could do her protocol in the States by piecing it together with several doctors). I appreciate the advice, but based on the research I have done, I would find it very, very hard to believe. I am one of 20 people in the world who received Dr. Vogl's protocol, the chemosensitivity test they do here is much more thorough, chemos are low dose, and now I'm involved in fetal cell treatment that is not legal in the US.
I met with Dr. Friedrickson yesterday. His is a biochemist, geneticist and medical oncologist. Another brilliant man, looks alot like Robin Williams (I hope he doesn't read this and get offended), has the build and grin of Robin Williams and currently has the Dead Poets Society beard. He has been doing research for 20 years and has been working closely with Dr. Jacob's patients. I can't get into detail about what he is doing but his work has helped reduce and / or neutralize the cancer cells. Very exciting stuff, of course not regulated by the FDA. Apparently there have been some attempts to regulate, but still no luck. I spoke with the doctor for about 15-20 minutes and we scheduled my next appointment with him for Thursday but I felt like there should be more. So I said "this seems so simple, am I missing something?" His reply, "some of the most difficult questions have the simplest answers." I liked that. Dr. Simoncini told me the same thing and I'll always remember that.
Had IV treatment yesterday and for the most part felt pretty good. Got a little run down last night after another long day of treatment, so we went to bed fairly early. I'm a tad nauseous this morning, but ate a little breakfast which has calmed my stomach a bit. Back to the IV room in 15 minutes to start again. I have been told that today is the day I would be feeling the worst from Dr. Vogl's treatment. If I don't get any worse then I am right now then I'll take it. Things continue to go well...who knows maybe this will be my last stop. One day at a time :)
More updates to come...
Love,
Tony
I took a second after she made her comment and responded that after today's meeting with Dr. Friedrickson (I'll explain in a second) I'm feeling more and more confident that this could be the "last stop". As most of you know that follow my story, my journey is full of twists and turns--as hard as it is to make these big decision, it's also part of the fun. I went on to tell her that I don't think you ever close the door to other opportunities, but at the same time if I'm having success here then it would not make sense to go anywhere else either.
People should be impressed by this facility and the care and compassion of Dr. Jacob. I certainly am. She is taking a very thorough approach to this disease. She has a "cookie cutter" approach in some of the tests she runs and medicines she gives, but at the end of the day everyone becomes extremely unique in the care and treatment that they receive. I am now convinced that there is no way I could have done everything she is doing here in the States. I know that was a piece of advice I was given (that I could do her protocol in the States by piecing it together with several doctors). I appreciate the advice, but based on the research I have done, I would find it very, very hard to believe. I am one of 20 people in the world who received Dr. Vogl's protocol, the chemosensitivity test they do here is much more thorough, chemos are low dose, and now I'm involved in fetal cell treatment that is not legal in the US.
I met with Dr. Friedrickson yesterday. His is a biochemist, geneticist and medical oncologist. Another brilliant man, looks alot like Robin Williams (I hope he doesn't read this and get offended), has the build and grin of Robin Williams and currently has the Dead Poets Society beard. He has been doing research for 20 years and has been working closely with Dr. Jacob's patients. I can't get into detail about what he is doing but his work has helped reduce and / or neutralize the cancer cells. Very exciting stuff, of course not regulated by the FDA. Apparently there have been some attempts to regulate, but still no luck. I spoke with the doctor for about 15-20 minutes and we scheduled my next appointment with him for Thursday but I felt like there should be more. So I said "this seems so simple, am I missing something?" His reply, "some of the most difficult questions have the simplest answers." I liked that. Dr. Simoncini told me the same thing and I'll always remember that.
Had IV treatment yesterday and for the most part felt pretty good. Got a little run down last night after another long day of treatment, so we went to bed fairly early. I'm a tad nauseous this morning, but ate a little breakfast which has calmed my stomach a bit. Back to the IV room in 15 minutes to start again. I have been told that today is the day I would be feeling the worst from Dr. Vogl's treatment. If I don't get any worse then I am right now then I'll take it. Things continue to go well...who knows maybe this will be my last stop. One day at a time :)
More updates to come...
Love,
Tony
Wednesday, October 8, 2008
Back from Frankfurt.
Today started with a botched wake up call. Crystal and I forgot to bring an alarm and there is not one on our cell phones or in the room. We called the second shift nurse last night who was supposed to leave a message for the first shift nurse to call us at 6:30 for our 7:30 ride to Frankfurt. I woke up at 7:20 and we did that "holy shit" routine where you jump out of bed and frantically get ready. We had a nurse call us at 7:30 to let us know they forgot to call, which I politely noted to them that I figured that out. We got to our car at 7:45...
The trip to Frankfurt was a little over 4 hours. We travelled at speeds from 75 mph to 100 mph depending on traffic, but overall our driver thought the traffic was good. They gave me a MRI as soon as we got there..literally within about five minutes of arriving. I know they wanted to get another baseline test on my liver tumors. We did have to wait about an hour to meet Prof. (they don't call them doctors here) Vogl. We have heard so much about him that I had a picture of him in my mind. He of course, didn't look like I thought he would, but he was a super nice guy, tall, in his late fifties, very well spoken and with a very good sense of humor. I thought he may be a little more "dry" and quiet based on what we have heard about him, but he wasn't. His disclaimer today was that what we are doing is considered "experimental"...he thinks there have been about two dozen procedures like I had today completed in the world. The funny thing is that he is not doing anything "wacky". He is using an antibody that I received while doing my chemos, but he is directing it right into my liver and both of my lungs. He then inserts dye which creates a 4-6 hour embolism so the antibody can not escape the organs. We will be able to see results in the next few days and then decide if I need to go back in and do it again one or maybe even two more times before I leave. So far I feel ok...but he warned that the other patients have typically started flu like systems about a day after the procedure that last a couple of days. We'll see...I told him my body isn't typical.
After the procedure I had a CAT scan to make sure the antibody was staying in the organs and went up to recovery. Crystal said we now have more pictures of my liver than we do of our kids so since she is scrap booking here she is considering adding some pictures of my liver in the scrap book for all these good memories!
I ate instantly in recovery...the food came immediately which was significant for me since in the States I typically wait about a hour or two for a morsel of food after these types of procedures. I was very proud of Crystal as she ventured out on her own to find her some food. She brought back a pizza...one of my favorites. For her reward I threw her a German bachelorette party in the recovery room. Let's just say the recovery room was not very private and had many male patients that when it was their time to leave were not afraid to walk around full monty before getting dressed. I told Crystal when I got back from the procedure that they are not as worried about "covering you" during or after the procedure as they are in the States. Not a big deal, I just found it interesting. Then we get "the show" from several German men in the recovery room and I guess lesson learned is the comfort level of their bodies here in Germany is high OR they were hoping Crystal had a few extra Euros to tuck...I don't know.
We drove back to Bad Wiessee...our driver waited for us. The drive home took about 5 fours, so all in all we logged a day of over 15 hours. We stopped at a gas station and got a snack on the way home, but we also had food waiting in our room at the Klinik which was nice. Made a quick phone call to the kids...they are doing great thanks to Nana and Terri Park. They are staying busy and sounds like they are having a good week thus far. We are winding down now...ready to see what tomorrow brings. I am sure we will sleep in tomorrow after the day we had today.
Thanks for all of those that have been in contact with your well wishes. We are happy here...three good days in a row. One day at a time though...we'll see what tomorrow brings.
Love,
Tony
The trip to Frankfurt was a little over 4 hours. We travelled at speeds from 75 mph to 100 mph depending on traffic, but overall our driver thought the traffic was good. They gave me a MRI as soon as we got there..literally within about five minutes of arriving. I know they wanted to get another baseline test on my liver tumors. We did have to wait about an hour to meet Prof. (they don't call them doctors here) Vogl. We have heard so much about him that I had a picture of him in my mind. He of course, didn't look like I thought he would, but he was a super nice guy, tall, in his late fifties, very well spoken and with a very good sense of humor. I thought he may be a little more "dry" and quiet based on what we have heard about him, but he wasn't. His disclaimer today was that what we are doing is considered "experimental"...he thinks there have been about two dozen procedures like I had today completed in the world. The funny thing is that he is not doing anything "wacky". He is using an antibody that I received while doing my chemos, but he is directing it right into my liver and both of my lungs. He then inserts dye which creates a 4-6 hour embolism so the antibody can not escape the organs. We will be able to see results in the next few days and then decide if I need to go back in and do it again one or maybe even two more times before I leave. So far I feel ok...but he warned that the other patients have typically started flu like systems about a day after the procedure that last a couple of days. We'll see...I told him my body isn't typical.
After the procedure I had a CAT scan to make sure the antibody was staying in the organs and went up to recovery. Crystal said we now have more pictures of my liver than we do of our kids so since she is scrap booking here she is considering adding some pictures of my liver in the scrap book for all these good memories!
I ate instantly in recovery...the food came immediately which was significant for me since in the States I typically wait about a hour or two for a morsel of food after these types of procedures. I was very proud of Crystal as she ventured out on her own to find her some food. She brought back a pizza...one of my favorites. For her reward I threw her a German bachelorette party in the recovery room. Let's just say the recovery room was not very private and had many male patients that when it was their time to leave were not afraid to walk around full monty before getting dressed. I told Crystal when I got back from the procedure that they are not as worried about "covering you" during or after the procedure as they are in the States. Not a big deal, I just found it interesting. Then we get "the show" from several German men in the recovery room and I guess lesson learned is the comfort level of their bodies here in Germany is high OR they were hoping Crystal had a few extra Euros to tuck...I don't know.
We drove back to Bad Wiessee...our driver waited for us. The drive home took about 5 fours, so all in all we logged a day of over 15 hours. We stopped at a gas station and got a snack on the way home, but we also had food waiting in our room at the Klinik which was nice. Made a quick phone call to the kids...they are doing great thanks to Nana and Terri Park. They are staying busy and sounds like they are having a good week thus far. We are winding down now...ready to see what tomorrow brings. I am sure we will sleep in tomorrow after the day we had today.
Thanks for all of those that have been in contact with your well wishes. We are happy here...three good days in a row. One day at a time though...we'll see what tomorrow brings.
Love,
Tony
Tuesday, October 7, 2008
Germany (Day 2).
Day two has come and gone here in Germany. Crystal and I went to bed early last night so we could recover from our exhausting day yesterday. We woke up at 7:30am to eat breakfast. We could have slept a little longer, but we only have a 45 minute window on when we can eat in the dining area here at the clinic for breakfast, lunch and dinner. It has become a joke with Crystal and I after only one day--we have to pay very close attention to the time or we might miss a meal! It was a little weird eating breakfast at 1:30am, lunch at 6 am and dinner at 1:00pm (Indiana time), but other than that the culture shock is gone.
After breakfast I had my IVs...more of the same from yesterday. They take about 4 hours. Not that we weren't social yesterday, but I think our personalities came out a little more today with "the gang" today since we were not as tired. We have a great group of people here...they are all very supportive of each other, all come from different walks of life, but have all been initiated into the cancer fraternity where the common bond is so strong all other social differences are forgotten and unimportant. I can't express how nice is it to have these people around to give us helpful hints about the clinic, the treatment, our surroundings, what to expect, etc. None have anything negative to say, but some have done different things and some have done the same things differently. They are all willing to open up and talk about their experiences. Crystal even mentioned today that its so funny in the cancer fraternity how we talk--how everyone is so open and able to joke about their loss of hair, or scars, or other stories or events that may not seem socially suitable for a conversation with someone you met a day ago.
After my IV we ate lunch...didn't want to miss that window of opportunity and had an ultrasound. Thankfully I'm not pregnant, that would have added a whole new twist to this adventure, but I was able to see my tumors up close and personal for the first time (not from a CD). Some of you may know that I'm not a big fan of knowing or seeing exactly what is going on. Crystal is my medical "hard drive" and I always turn to her with questions I can't answer for the doctors. I figure I can stay more positive and not manifest "worry" by not seeing or really knowing the extent of my disease. The ultrasound was not an uplifting experiece, but the doctor made it easy and she is looking forward to seeing some improvement in the next few days. The ultrasound today was to take a baseline of where I am so we can see how what we are doing effects the tumors. I don't know why we have never done an ultrasound in the States...it's an easy procedure and it's very easy to see the majority of what is going on. Very interesting...
We came back to the room so I could catch up on my e-mails at work and then decided to take a walk around the town to get the lay of the land. We had a beautiful day here so we didn't want to waste it, plus we needed to get out for some fresh air. We walked down to the lake in Bad Wiessee, sat on a bench and enjoyed each other company (pictures on the website). We walked the town to see our surroundings, took a "wrong turn" down a path to the lake and ended up in the backyard of a man who went to West Point for three years with Colin Powell. I'm glad he was cordial and didn't shoot us...everyone is very friendly here. We walked back home, talked with the gang for a little longer while they were finishing their treatments and soon went to dinner--didn't want to miss that window. Came back to the room, showered and now resting for the big day tomorrow.
We leave at 7:30 to go to Frankfurt to see Dr. Vogl. He is going to do some locallized treatment in both my liver and my lungs. I am so excited to meet him as everyone here loves the man and is amazed of his work. I do know it is going to be a long day tomorrow...we expect to get back to the clinic tomorrow around 1 am. Dr. Jacob said I should feel fine tomorrow, but she would expect some discomfort or "not feeling good" by late Thursday going into Friday. We'll see what happens.
That was our day...I chalk it up to another good one. You may not hear from me tomorrow based on our long day depending on how tired we are when we get back. We got to talk to Ashley, William, Donna and my dad today...always good to hear from home.
More updates soon...
Love....Tony
After breakfast I had my IVs...more of the same from yesterday. They take about 4 hours. Not that we weren't social yesterday, but I think our personalities came out a little more today with "the gang" today since we were not as tired. We have a great group of people here...they are all very supportive of each other, all come from different walks of life, but have all been initiated into the cancer fraternity where the common bond is so strong all other social differences are forgotten and unimportant. I can't express how nice is it to have these people around to give us helpful hints about the clinic, the treatment, our surroundings, what to expect, etc. None have anything negative to say, but some have done different things and some have done the same things differently. They are all willing to open up and talk about their experiences. Crystal even mentioned today that its so funny in the cancer fraternity how we talk--how everyone is so open and able to joke about their loss of hair, or scars, or other stories or events that may not seem socially suitable for a conversation with someone you met a day ago.
After my IV we ate lunch...didn't want to miss that window of opportunity and had an ultrasound. Thankfully I'm not pregnant, that would have added a whole new twist to this adventure, but I was able to see my tumors up close and personal for the first time (not from a CD). Some of you may know that I'm not a big fan of knowing or seeing exactly what is going on. Crystal is my medical "hard drive" and I always turn to her with questions I can't answer for the doctors. I figure I can stay more positive and not manifest "worry" by not seeing or really knowing the extent of my disease. The ultrasound was not an uplifting experiece, but the doctor made it easy and she is looking forward to seeing some improvement in the next few days. The ultrasound today was to take a baseline of where I am so we can see how what we are doing effects the tumors. I don't know why we have never done an ultrasound in the States...it's an easy procedure and it's very easy to see the majority of what is going on. Very interesting...
We came back to the room so I could catch up on my e-mails at work and then decided to take a walk around the town to get the lay of the land. We had a beautiful day here so we didn't want to waste it, plus we needed to get out for some fresh air. We walked down to the lake in Bad Wiessee, sat on a bench and enjoyed each other company (pictures on the website). We walked the town to see our surroundings, took a "wrong turn" down a path to the lake and ended up in the backyard of a man who went to West Point for three years with Colin Powell. I'm glad he was cordial and didn't shoot us...everyone is very friendly here. We walked back home, talked with the gang for a little longer while they were finishing their treatments and soon went to dinner--didn't want to miss that window. Came back to the room, showered and now resting for the big day tomorrow.
We leave at 7:30 to go to Frankfurt to see Dr. Vogl. He is going to do some locallized treatment in both my liver and my lungs. I am so excited to meet him as everyone here loves the man and is amazed of his work. I do know it is going to be a long day tomorrow...we expect to get back to the clinic tomorrow around 1 am. Dr. Jacob said I should feel fine tomorrow, but she would expect some discomfort or "not feeling good" by late Thursday going into Friday. We'll see what happens.
That was our day...I chalk it up to another good one. You may not hear from me tomorrow based on our long day depending on how tired we are when we get back. We got to talk to Ashley, William, Donna and my dad today...always good to hear from home.
More updates soon...
Love....Tony
Monday, October 6, 2008
We made it to Germany.
Day one in Germany is coming to an end. If you are not one to read the details the overall theme right now is positive. We had a great first day, one that exceeded our expectations and now have a better idea of what the plan is while we are here.
We have been comparing our experiences here with what we encountered in Italy but found as the day progressed that we probably shouldn't because the two adventures are going to be quite different. I think the culture shock "got us" in Italy, but we felt more prepared coming here and I must say although the language is much different, everything seems easier thus far.
The flight over was non-eventful. Long and tiring. We did get a play-by-play from Crystal's sister via cell phone on the last two minutes of the Colts game while sitting on the runway. Hearing about their comback win was a good way to start the trip. The plane was a little older than the one we took to Italy so comfort level was lacking. We tried to sleep but only dozed off for a hour or two. We remember when we went to Italy everyone on the plane seemed so happy---not really the case on this plane. Typical airplane stuffiness. Crystal reminded me that we were going to Germany which made me laugh, but isn't fair to Germany.
We landed early (7:30am in Germany--1:30am EST). The airport was very easy to navigate and we had a driver waiting for us. She drove us to the Klinic im Alpenpark in Bad Wiesse which was about an hour from the airport. She spoke excellent english so we able to drill her with questions about the culture which was nice for us--she was probably glad when the ride was over though.
We arrived at the Klinic and I thought we would have some down time, but we started right away. We were shown to our room, which was is in a new section of the Klinic and very nice. They brought us a big fruit platter and Dr. Jacob came to see us all within about 30 minutes. She was very nice and had a "tentative" plan laid out for me. We talked about the plan for 20-30 minutes and went to the IV room to get blood draws and start IV treatments. We met several couples at the IV room, all very upbeat, some in worse condition than I, some in better. They all, of course, have nothing but great things to say about Dr. Jacob and her abilities. They have all tried different treatments in the States or in Canada and have been frustrated by what they have been told and the treatments they were offered. They unanimously have hope here, all are getting better and are excited about what they are doing. Crystal and I were extremely tired, but so thankful we were able to meet the current "cast of characters" and hear about their experiences while sharing ours. A few of the couples are leaving this week, but I am sure new ones will arrive bringing new faces and personalities into our lives.
We are going to Frankfurt on Wednesday to see Dr. Vogl where he will be perfoming some local treatments to both my liver and lungs. We found out from many of the other patients here what an amazing man he is so I am really excited for the trip. We are riding to Frankfurt with another couple--4 hours there, the 4 hour procedure (incl observation), and 4 hours back. Everyone has said the day is long, but well worth it. He apparently is doing things here in Germany that no one else is doing in the world.
After the IV we came back to the room and slept for several hours. We woke, went to dinner here in the Klinic and now resting again in the room. We're still tired so we won't have a problem going to bed again soon.
Everyone speaks English and most of the patients we met today were from America so the culture shock has not yet hit us. There was nothing today that made us question this decision. We are feeling very good about where we are and the new path we have taken. As I always say, one day at a time. Today went well and there is hope that there will be many more good days ahead.
I will update everyone tomorrow...I'm exhausted.
Love to all,
Tony
We have been comparing our experiences here with what we encountered in Italy but found as the day progressed that we probably shouldn't because the two adventures are going to be quite different. I think the culture shock "got us" in Italy, but we felt more prepared coming here and I must say although the language is much different, everything seems easier thus far.
The flight over was non-eventful. Long and tiring. We did get a play-by-play from Crystal's sister via cell phone on the last two minutes of the Colts game while sitting on the runway. Hearing about their comback win was a good way to start the trip. The plane was a little older than the one we took to Italy so comfort level was lacking. We tried to sleep but only dozed off for a hour or two. We remember when we went to Italy everyone on the plane seemed so happy---not really the case on this plane. Typical airplane stuffiness. Crystal reminded me that we were going to Germany which made me laugh, but isn't fair to Germany.
We landed early (7:30am in Germany--1:30am EST). The airport was very easy to navigate and we had a driver waiting for us. She drove us to the Klinic im Alpenpark in Bad Wiesse which was about an hour from the airport. She spoke excellent english so we able to drill her with questions about the culture which was nice for us--she was probably glad when the ride was over though.
We arrived at the Klinic and I thought we would have some down time, but we started right away. We were shown to our room, which was is in a new section of the Klinic and very nice. They brought us a big fruit platter and Dr. Jacob came to see us all within about 30 minutes. She was very nice and had a "tentative" plan laid out for me. We talked about the plan for 20-30 minutes and went to the IV room to get blood draws and start IV treatments. We met several couples at the IV room, all very upbeat, some in worse condition than I, some in better. They all, of course, have nothing but great things to say about Dr. Jacob and her abilities. They have all tried different treatments in the States or in Canada and have been frustrated by what they have been told and the treatments they were offered. They unanimously have hope here, all are getting better and are excited about what they are doing. Crystal and I were extremely tired, but so thankful we were able to meet the current "cast of characters" and hear about their experiences while sharing ours. A few of the couples are leaving this week, but I am sure new ones will arrive bringing new faces and personalities into our lives.
We are going to Frankfurt on Wednesday to see Dr. Vogl where he will be perfoming some local treatments to both my liver and lungs. We found out from many of the other patients here what an amazing man he is so I am really excited for the trip. We are riding to Frankfurt with another couple--4 hours there, the 4 hour procedure (incl observation), and 4 hours back. Everyone has said the day is long, but well worth it. He apparently is doing things here in Germany that no one else is doing in the world.
After the IV we came back to the room and slept for several hours. We woke, went to dinner here in the Klinic and now resting again in the room. We're still tired so we won't have a problem going to bed again soon.
Everyone speaks English and most of the patients we met today were from America so the culture shock has not yet hit us. There was nothing today that made us question this decision. We are feeling very good about where we are and the new path we have taken. As I always say, one day at a time. Today went well and there is hope that there will be many more good days ahead.
I will update everyone tomorrow...I'm exhausted.
Love to all,
Tony
Tuesday, September 30, 2008
Sometimes no news is good news.
For once I don't have any crazy news to report, but I do know there have been people looking on the site and possibly wondering what is going on. All I know right now is that we are going to Germany on Sunday. We get there Monday morning in Munich and hopefully start treatment right away. We have many unanswered questions concerning the details with the doctors there, but we are confident we will get most everything answered by the time we leave. My bulldog, Crystal, is staying for the first week so I'm sure I'll have all doctors and nurses well trained before she leaves. Other family members will be with me the other two weeks. Each day I feel better and better about the decision. I have talked to many people and have continued researching and feel like this is a good decision. Time will tell, but once again hopeful.
On a side note...I have another Fraternity brother who has a lawn care business in the Indianapolis / Hamilton County area. He has made the offer below that will provide a service, but at the same time may help generate some money for the treatment fund. Mike was a pledge brother and although we have not stayed in touch over the years, shows the type of guys that I "ran with" in college. I appreciate his support along with the other fraternity brothers that have gotten involved in this journey. Amazing.
See below...
For people in the Indy/Hamilton County area who need their lawns aerated, if you allow my company to provide this service, I'll donate all 100% of the revenue to Tony's fund. You'll be getting a much needed service for your lawn, and it's all going to a great cause. We can provide core aeration on normal sized lawns for $65.
Please contact Mike directly via the information below. There is no "deadline" on this service, but he has mentioned that it is best to aerate while grass is actively growing (early November). He has also offered a discount of $10.00 if you refer someone and they use the service. Basically a $55.00 offer if you get another person to sign up for the aeration service. Thanks again Mike for doing this...
Mike's contact info is below:
Mike Chovanec
Indy Lawn Care
317-750-0720
indylawncareservices@yahoo.com
More to come before we leave for Germany.
Tony
On a side note...I have another Fraternity brother who has a lawn care business in the Indianapolis / Hamilton County area. He has made the offer below that will provide a service, but at the same time may help generate some money for the treatment fund. Mike was a pledge brother and although we have not stayed in touch over the years, shows the type of guys that I "ran with" in college. I appreciate his support along with the other fraternity brothers that have gotten involved in this journey. Amazing.
See below...
For people in the Indy/Hamilton County area who need their lawns aerated, if you allow my company to provide this service, I'll donate all 100% of the revenue to Tony's fund. You'll be getting a much needed service for your lawn, and it's all going to a great cause. We can provide core aeration on normal sized lawns for $65.
Please contact Mike directly via the information below. There is no "deadline" on this service, but he has mentioned that it is best to aerate while grass is actively growing (early November). He has also offered a discount of $10.00 if you refer someone and they use the service. Basically a $55.00 offer if you get another person to sign up for the aeration service. Thanks again Mike for doing this...
Mike's contact info is below:
Mike Chovanec
Indy Lawn Care
317-750-0720
indylawncareservices@yahoo.com
More to come before we leave for Germany.
Tony
Saturday, September 27, 2008
I may have spoken to soon...
If you have been following this journal / blog you may realize that things can change fairly quickly in my life. I should know this the best since I live it, but apparently the excitement of having a "decision" made Thursday pushed me to post our plans for Germany. That was Thursday. Friday came with a new twist and I've been walking around in slight disbelief until now.
I woke up Friday morning feeling fairly well. I was anxious to get moving on our plans, tell the kids, and begin to prepare myself for some time away from home. My usual routine is to check my e-mail as soon as I wake up, which I did. I was hopeful there was an e-mail from Dr. Ursula outlining the agenda, which there was. Then came "the twist" I did not expect.
I have kept our fundraising success details to a minimum. Not because I don't want people to know, but more so because I know there are people that are still contributing daily and honestly didn't want that to stop. Many people ask me "how much do you need?" and my answer remains---I have no idea. In my head I was concerned that if I "published" a number and hit that number there may be people that are willing to donate but wouldn't based on us meeting a goal.
Please understand...I want to be clear that I continue to be in awe of the support we have received and by no means want to sound "greedy." What you all are doing for me and my family will have an affect on Crystal and I the rest of our lives. One of my biggest motivators to win this battle is so I can "give back" to those who have been so supportive over the last four years, with special emphasis on the last several months. Crystal and I know that each and every person that has helped us does it because they want to, but please understand, ALWAYS receiving is not always an easy thing.
So tonight I publish that with all of your help we have raised $60,000 in the Feller Treatment Fund. That is a jaw dropping number to me. I will simply say that I am thankful to all of you each and every day. Sometimes I step back and can't believe that I have cancer--the thought of what I am going through is so surreal. The same goes for the money we have raised. To actually think of raising that type of money---for me and my family--is surreal. We were able to pay for our trip to Italy which totalled $10,000. Since I'm fairly good with numbers I knew we had around $50,000 for the next treatment---more than enough.
Enter "the twist" from Dr. Ursula. My three week trip to Germany, excluding airfare and any extras (including any "unnoted medical procedures") is $70,000. Again, the math plays out to a $20,000 deficit not including those extras. Talk about jaws hitting the floor. So here I am Friday morning, excited about getting going and I get this news. I should have known not to publish this trip until I knew for sure because this journey has been so up and down--my "day at a time thing" got the best of me I guess.
So Crystal and I spent Friday trying to figure out how we can make this happen. Crystal e-mailed the doctor and asked if there was any way to keep our costs down or get some financial assistance. We explained our position with her. I spoke with my HR department to see if our insurance may cover some of this treatment overseas, since some of the treatment is conventional. Anything we could recoup from insurance would help us that much more. Without getting on my soapbox again, this is another example of how screwed up our health care system is. I'm sure they would be willing to pay for the radiation beads the IU Med Center suggested for $40,000, but I have to hope and pray they will cover some treatment that is proven to be very effective as well (with less side effects) because its performed in another country. I'm also trying to see if there is anything I can do here (blood tests, CTs, etc.) that may cut the costs down in Germany and would be covered by my insurance because I would be doing them in the US.
While all of this was going on Friday I had an encounter with a women who was introduced to me by a friend. He wanted to know if he could introduce me to her because her husband was in the medical field and knew about "cutting edge" treatments, etc., etc. To my surprise this woman knew of Dr. Jacob, Dr. Vogl, and Dr. Friedrieksen in Germany (all doctors I would be seeing). She knew about the clinic in Mexico and the clinic in Arizona. She said her husband could give me more information because he is more familiar with these doctors, but was able to give me some candid answers (after some prodding) to some of my questions. She was very high on Germany and Dr. Vogl and Dr. Friedrieksen. Her concern with Dr. Ursula was that her clinic base was very affluent--not that there was anything wrong with that--but that sometimes she felt she took advantage of that. After I told her my story she actually did not think the price tag was unreasonable based on the treatment she was doing, but thought I should ask for some assistance and / or be careful when I get there on what I'm being charged for any "extras". She said she would have her husband call me this weekend. He didn't call today, but having the information from her alone was very helpful.
I have said all along (even before the fundraiser) that I will not let money stand in my way. Crystal and I decided we are still going to Germany today. We are going to tell the kids tomorrow and start planning. I don't think we can afford to let this opportunity slip away. We'll figure out the financial piece of this thing as we go.
So maybe I didn't speak to soon after all--but we have some work to do before we can actually get over there. We have delayed our trip several days until a week from Monday (the 6th?) so we can work on moving some dollars around to make this happen. We have e-mailed Dr.Ursula and asked if that would work in her schedule. I'm sure we will know more on Monday. Colts are on a bye this week, so that gives me a little more time (still have to watch some football) tomorrow to wrap some things up before I leave for a few weeks.
Tomorrow is a new day so who knows what to expect.
With love,
Tony
I woke up Friday morning feeling fairly well. I was anxious to get moving on our plans, tell the kids, and begin to prepare myself for some time away from home. My usual routine is to check my e-mail as soon as I wake up, which I did. I was hopeful there was an e-mail from Dr. Ursula outlining the agenda, which there was. Then came "the twist" I did not expect.
I have kept our fundraising success details to a minimum. Not because I don't want people to know, but more so because I know there are people that are still contributing daily and honestly didn't want that to stop. Many people ask me "how much do you need?" and my answer remains---I have no idea. In my head I was concerned that if I "published" a number and hit that number there may be people that are willing to donate but wouldn't based on us meeting a goal.
Please understand...I want to be clear that I continue to be in awe of the support we have received and by no means want to sound "greedy." What you all are doing for me and my family will have an affect on Crystal and I the rest of our lives. One of my biggest motivators to win this battle is so I can "give back" to those who have been so supportive over the last four years, with special emphasis on the last several months. Crystal and I know that each and every person that has helped us does it because they want to, but please understand, ALWAYS receiving is not always an easy thing.
So tonight I publish that with all of your help we have raised $60,000 in the Feller Treatment Fund. That is a jaw dropping number to me. I will simply say that I am thankful to all of you each and every day. Sometimes I step back and can't believe that I have cancer--the thought of what I am going through is so surreal. The same goes for the money we have raised. To actually think of raising that type of money---for me and my family--is surreal. We were able to pay for our trip to Italy which totalled $10,000. Since I'm fairly good with numbers I knew we had around $50,000 for the next treatment---more than enough.
Enter "the twist" from Dr. Ursula. My three week trip to Germany, excluding airfare and any extras (including any "unnoted medical procedures") is $70,000. Again, the math plays out to a $20,000 deficit not including those extras. Talk about jaws hitting the floor. So here I am Friday morning, excited about getting going and I get this news. I should have known not to publish this trip until I knew for sure because this journey has been so up and down--my "day at a time thing" got the best of me I guess.
So Crystal and I spent Friday trying to figure out how we can make this happen. Crystal e-mailed the doctor and asked if there was any way to keep our costs down or get some financial assistance. We explained our position with her. I spoke with my HR department to see if our insurance may cover some of this treatment overseas, since some of the treatment is conventional. Anything we could recoup from insurance would help us that much more. Without getting on my soapbox again, this is another example of how screwed up our health care system is. I'm sure they would be willing to pay for the radiation beads the IU Med Center suggested for $40,000, but I have to hope and pray they will cover some treatment that is proven to be very effective as well (with less side effects) because its performed in another country. I'm also trying to see if there is anything I can do here (blood tests, CTs, etc.) that may cut the costs down in Germany and would be covered by my insurance because I would be doing them in the US.
While all of this was going on Friday I had an encounter with a women who was introduced to me by a friend. He wanted to know if he could introduce me to her because her husband was in the medical field and knew about "cutting edge" treatments, etc., etc. To my surprise this woman knew of Dr. Jacob, Dr. Vogl, and Dr. Friedrieksen in Germany (all doctors I would be seeing). She knew about the clinic in Mexico and the clinic in Arizona. She said her husband could give me more information because he is more familiar with these doctors, but was able to give me some candid answers (after some prodding) to some of my questions. She was very high on Germany and Dr. Vogl and Dr. Friedrieksen. Her concern with Dr. Ursula was that her clinic base was very affluent--not that there was anything wrong with that--but that sometimes she felt she took advantage of that. After I told her my story she actually did not think the price tag was unreasonable based on the treatment she was doing, but thought I should ask for some assistance and / or be careful when I get there on what I'm being charged for any "extras". She said she would have her husband call me this weekend. He didn't call today, but having the information from her alone was very helpful.
I have said all along (even before the fundraiser) that I will not let money stand in my way. Crystal and I decided we are still going to Germany today. We are going to tell the kids tomorrow and start planning. I don't think we can afford to let this opportunity slip away. We'll figure out the financial piece of this thing as we go.
So maybe I didn't speak to soon after all--but we have some work to do before we can actually get over there. We have delayed our trip several days until a week from Monday (the 6th?) so we can work on moving some dollars around to make this happen. We have e-mailed Dr.Ursula and asked if that would work in her schedule. I'm sure we will know more on Monday. Colts are on a bye this week, so that gives me a little more time (still have to watch some football) tomorrow to wrap some things up before I leave for a few weeks.
Tomorrow is a new day so who knows what to expect.
With love,
Tony
Thursday, September 25, 2008
Another leap of faith
I've faced many difficult decisions in my life, but over the past two weeks I have been presented with many different scenarios for my next steps and I can honestly say this decision has been one of the most difficult decisions I have ever had to make. I have learned over the past four years that once I make a decision I don't look back. I feel like whatever is supposed to happen--will happen. I pray every night...asking the Holy Spirit for guidance and try my best to "listen" and hope for the best.
After speaking with the clinic in Arizona today, the clinic from Mexico yesterday and finally the doctor from Germany today--my decision is another adventure overseas. We're heading to Germany. I had some dialogue te past two days via e-mail with the doctor from Germany, but today Crystal and I were able to speak with her. We felt like we received a fairly good overview of what she would be doing. More than "call me when you get here"--which is what we had to go on when we went to Italy to see Dr. Simoncini, but much less information than if we were going to Arizona or Mexico.
Here is what I know (or think I know)...she is going to send me some vials for me to draw blood. I'll fill those vials Monday and ship them overnight to a lab in Greece. This lab will take my blood and do a chemosensitivity test. This test will tell the doctor what type of chemos and antibodies would react best (and not so good) with my tumors. She thinks she will have the results by Thursday next week. Once she has the results she can begin treatment.
Treatment will begin in a hospital in Frankfurt. They will inject chemo to my tumors (I'm a tad unclear if it will only be liver directed or if they will try to get to my lungs too), do an embolism procedure where the smaller veins will be shut off for 6-8 hours so the chemo can not "escape". Once I stabilize I will be sent to a clinic near Munich to begin immunotherapy, vaccination therapy and probably more systemic chemo. The belief in Germany is to use smaller amounts of chemo while supporting your body through immunotherapy. They hope to have little to no side effects but get results at the same time. I'm sure I'll be learning as I go.
The doctor is super nice and super honest about my situation. She knows there are some pros and cons with my situation, will not promise anything (which I respect and would expect), but also feels like there could be some very effective treatments for me. She was able to poke some holes in some of my previous treatments and explain why she did not think they were effective. I'm still a little unclear on where I will be and what to expect from the clinic. I am supposed to receive that information from her tomorrow.
We originally told her we would be there next Thursday morning, but after sitting down tonight with Crystal, we are considering moving it back to the following Monday. Makes more sense from a travel perspective and also starts a procedure on Monday so if I have any type of complications I'm not worried about doctors gone for the weekend. We'll nail down exact plans in the next few days.
Obviously feels good to make a decision, but this journey continues to be a "leap of faith." I trust that I am being led to this doctor for a reason and will have to trust her treatment methods and protocols. I continue to live one day at a time. Today was another good day....I'll worry about tomorrow tomorrow.
More updates to come...
Tony
After speaking with the clinic in Arizona today, the clinic from Mexico yesterday and finally the doctor from Germany today--my decision is another adventure overseas. We're heading to Germany. I had some dialogue te past two days via e-mail with the doctor from Germany, but today Crystal and I were able to speak with her. We felt like we received a fairly good overview of what she would be doing. More than "call me when you get here"--which is what we had to go on when we went to Italy to see Dr. Simoncini, but much less information than if we were going to Arizona or Mexico.
Here is what I know (or think I know)...she is going to send me some vials for me to draw blood. I'll fill those vials Monday and ship them overnight to a lab in Greece. This lab will take my blood and do a chemosensitivity test. This test will tell the doctor what type of chemos and antibodies would react best (and not so good) with my tumors. She thinks she will have the results by Thursday next week. Once she has the results she can begin treatment.
Treatment will begin in a hospital in Frankfurt. They will inject chemo to my tumors (I'm a tad unclear if it will only be liver directed or if they will try to get to my lungs too), do an embolism procedure where the smaller veins will be shut off for 6-8 hours so the chemo can not "escape". Once I stabilize I will be sent to a clinic near Munich to begin immunotherapy, vaccination therapy and probably more systemic chemo. The belief in Germany is to use smaller amounts of chemo while supporting your body through immunotherapy. They hope to have little to no side effects but get results at the same time. I'm sure I'll be learning as I go.
The doctor is super nice and super honest about my situation. She knows there are some pros and cons with my situation, will not promise anything (which I respect and would expect), but also feels like there could be some very effective treatments for me. She was able to poke some holes in some of my previous treatments and explain why she did not think they were effective. I'm still a little unclear on where I will be and what to expect from the clinic. I am supposed to receive that information from her tomorrow.
We originally told her we would be there next Thursday morning, but after sitting down tonight with Crystal, we are considering moving it back to the following Monday. Makes more sense from a travel perspective and also starts a procedure on Monday so if I have any type of complications I'm not worried about doctors gone for the weekend. We'll nail down exact plans in the next few days.
Obviously feels good to make a decision, but this journey continues to be a "leap of faith." I trust that I am being led to this doctor for a reason and will have to trust her treatment methods and protocols. I continue to live one day at a time. Today was another good day....I'll worry about tomorrow tomorrow.
More updates to come...
Tony
Tuesday, September 23, 2008
Not much to update...
Just a quick note tonight. I have had many people ask me what I'm doing next and I am yet to have an answer. Basically I'm waiting to hear from Germany. I'm not a man of patience in this instance, so have started pushing the issue with the doctor there.
I have been "accepted" into the Mexico program so I know I can go there if need be. I can do radiation beads at the IU Med Center that go directly into my liver. The non-invasive procedure that was explained to me has now become I can't be around anyone for three days and probably can't fly for over a week after these beads are inserted. Apparently I'll be glowing from the radiation---I'm thinking about saving that treatment for the Holidays so I can blend in with all of the holiday lights. So much for treatment that doesn't effect the rest of your body. Unfortunately I'm still considering it as an option, but want to hear from Germany first.
I also heard back from Dr. Simoncini. He basically told me that what I did was not enough regarding the sodium bicarb. He is convinced I need a higher dosage each day and need to be on sodium bicarb longer. I'm considering doing venous sodium bicarb while I'm waiting to make a decision---can't hurt right?
So everyone is now caught up.
Also went to the service tonight for Greg Cavanaugh. As much as I thought I would be ok with his passing (because I know he is ok) it was very difficult for me. Obviously it saddens me to see Greg go and leave his family and friends behind, but it was a difficult test to remember to live life in the moment. All those fears and "what ifs" challenged me tonight. Like Greg, I am dealing with a serious situation and like Greg, want to beat it. I know he continues to pull for me, as I did for him. Please continue to keep his family in your prayers.
I'll give you more updates as they come...
Love,
Tony
I have been "accepted" into the Mexico program so I know I can go there if need be. I can do radiation beads at the IU Med Center that go directly into my liver. The non-invasive procedure that was explained to me has now become I can't be around anyone for three days and probably can't fly for over a week after these beads are inserted. Apparently I'll be glowing from the radiation---I'm thinking about saving that treatment for the Holidays so I can blend in with all of the holiday lights. So much for treatment that doesn't effect the rest of your body. Unfortunately I'm still considering it as an option, but want to hear from Germany first.
I also heard back from Dr. Simoncini. He basically told me that what I did was not enough regarding the sodium bicarb. He is convinced I need a higher dosage each day and need to be on sodium bicarb longer. I'm considering doing venous sodium bicarb while I'm waiting to make a decision---can't hurt right?
So everyone is now caught up.
Also went to the service tonight for Greg Cavanaugh. As much as I thought I would be ok with his passing (because I know he is ok) it was very difficult for me. Obviously it saddens me to see Greg go and leave his family and friends behind, but it was a difficult test to remember to live life in the moment. All those fears and "what ifs" challenged me tonight. Like Greg, I am dealing with a serious situation and like Greg, want to beat it. I know he continues to pull for me, as I did for him. Please continue to keep his family in your prayers.
I'll give you more updates as they come...
Love,
Tony
Friday, September 19, 2008
I think I found my #1 along with another sad day...
As always I do my grieving from a disappointing scan for a day or two and tend to bounce back with renewed energy. This one has not been to different besides I think my grieving lasted a third day this time around. I'm not sure if that was the case because of the "news" or because of the burden I feel with the next decision that needs to be made.
I know I still have some options, but at the same time I also know it could be one of the most important decisions I've ever had to make. I won't go through the details of each clinic, but thought I had my decision down to a clinic in Chicago, Phoenix, or Mexico. I was back and forth between Mexico and Arizona, both had their positives and both had their negatives. Honestly though, I was having a difficult time comparing both apples to apples and really struggling emotionally with a decision. Enter Germany.
Some of you may know that I contacted a doctor in Germany several weeks ago. I was a little turned off by the response from the doctor as it seemed to me that they were very pro chemo. As most of you know, I'm not very pro-chemo, plus I was thinking if I did go back to chemo I could do it here in the States.
I ran into Tom Shine (executive management at SLD of the Adidas Group) on Thursday morning. He was the one who referred me to this clinic in Germany. He had some friends that went to the clinic and were having success with their treatment. He put me in touch with one of those friends that went to the clinic so I could get a better understanding of the protocols. After talking to his friend and researching the clinic I'm 99% sure that is where I need to be..if they will take me. I've e-mailed the doctor again and have asked if I am a candidate for the program. If so, I'm off to Germany. We'll see what happens...maybe off on another adventure. I'll provide details once I'm "accepted" to their program.
In other news...
In many ways when someone is diagnosed with cancer you automatically are initiated into a cancer fraternity. You share stories and experiences, meet families, and become friends with people who are experiencing the same emotions and pains that you are going through. I've lost two members of that fraternity over the past two years, both from colon cancer, Buddy McAtee and Meredith Rankin. Yesterday we lost one more.
Greg Cavanaugh lost his battle with small cell lung cancer. We met a year ago at my naturopath and have remained close in our "fraternity" over the past year. He will be deeply missed by his wife Julie, his three children (all under the age of 6), and all of his friends and family whom he touched in his life (including myself). I would ask that all of you reading this would take a moment and wish his family peace, love and forgiveness during their time of sorrow. We love you Greg.
Tony
I know I still have some options, but at the same time I also know it could be one of the most important decisions I've ever had to make. I won't go through the details of each clinic, but thought I had my decision down to a clinic in Chicago, Phoenix, or Mexico. I was back and forth between Mexico and Arizona, both had their positives and both had their negatives. Honestly though, I was having a difficult time comparing both apples to apples and really struggling emotionally with a decision. Enter Germany.
Some of you may know that I contacted a doctor in Germany several weeks ago. I was a little turned off by the response from the doctor as it seemed to me that they were very pro chemo. As most of you know, I'm not very pro-chemo, plus I was thinking if I did go back to chemo I could do it here in the States.
I ran into Tom Shine (executive management at SLD of the Adidas Group) on Thursday morning. He was the one who referred me to this clinic in Germany. He had some friends that went to the clinic and were having success with their treatment. He put me in touch with one of those friends that went to the clinic so I could get a better understanding of the protocols. After talking to his friend and researching the clinic I'm 99% sure that is where I need to be..if they will take me. I've e-mailed the doctor again and have asked if I am a candidate for the program. If so, I'm off to Germany. We'll see what happens...maybe off on another adventure. I'll provide details once I'm "accepted" to their program.
In other news...
In many ways when someone is diagnosed with cancer you automatically are initiated into a cancer fraternity. You share stories and experiences, meet families, and become friends with people who are experiencing the same emotions and pains that you are going through. I've lost two members of that fraternity over the past two years, both from colon cancer, Buddy McAtee and Meredith Rankin. Yesterday we lost one more.
Greg Cavanaugh lost his battle with small cell lung cancer. We met a year ago at my naturopath and have remained close in our "fraternity" over the past year. He will be deeply missed by his wife Julie, his three children (all under the age of 6), and all of his friends and family whom he touched in his life (including myself). I would ask that all of you reading this would take a moment and wish his family peace, love and forgiveness during their time of sorrow. We love you Greg.
Tony
Tuesday, September 16, 2008
The results are in.
In one of my first jobs out of college some of us would take turns giving "talks" to 20-25 reps. One of the first "talks" I ever gave was on positive attitude. I remember asking the reps what kind of day they would have if they woke up 1) it was raining 2) stubbed their toe on the shower 3) burnt their breakfast and dribbled juice on their shirt and 4) got into a traffic jam causing them to be 30 minutes late from work. I think it is safe to say that most of us would consider this a "bad day", possibly be grumpy from the time we got to work, and probably even more possible that we would be grumpy the rest of the day depending on what other "bad" things occurred the remainder of the day. Positive or negative attitude that day? Hmmm.
Then I remember saying to take the same scenario and add that your spouse or boyfriend/girlfriend leave you a note in your car telling you how much they love and appreciate you. You get a call on your cell (during the traffic jam) from a friend you haven't heard from in years and have a great talk "catching up". A co-worker lets you borrow their umbrella so you don't get wet walking into work and the receptionist compliments you on how nice you look that day (except for the juice on your shirt). And to top it off, you get an unexpected small bonus for a recent job well done at work. Now what kind of day are you going to have--it's still raining, you still stubbed your toe, burnt breakfast and were late for work. All of those things will be forgotten and I would venture to say this would be considered a "good day" and you would go through the day with a positive attitude and smile on your face.
Then I would ramble on and on while watching people doze off and finally would conclude saying something about how we allow the events in our lives dictate our attitude. No matter what kind of day we are having, we choose how we are going to live that day. I have tried over the years to practice what I preach, live the day as it comes, and stay positive no matter what comes my way. I think I would give myself a good grade overall if I had to grade myself. I would by no means give myself the positive attitude of the year award, but I would say I do a pretty good job.
So my day started today without rain or a stubbed toe. I didn't burn breakfast or spill juice on my shirt. I did however get a call from a friend, my oncologist, Dr. Helft. We did have a long talk catching up on where I stand. Unfortunately his news was not good. Basically all of my tumors have grown--in the liver and in the lungs. They also found a new spot in a lymph node in my chest. I'm not sure I can describe my disappointment nor how saddened I am about the news. I think all of you following my story knew how important this scan was for me. For some reason the results I was hoping for (no change or reduction in tumor growth) was not meant to be.
As always my plan right now is to take a day or two to get through the emotions, make some calls to doctors, clinics, etc. and talk through this with Crystal and my family. Then I bounce back and start swinging again.
I know I have some options and will outline those in the days to come. As I've said before and will continue to say, I'm not giving up on the sodium bicarb but I also don't have time to waste trying to continue to sell this idea to my doctors here. My naturopath may have discovered why I was having pain during my sodium bicarb treatments so we will be quickly investigating her findings and how to counteract that pain in the future. Time is becoming an important factor and I obviously need to get the growth stopped as quickly as possible.
So did I have a "bad day"? Considering that we single handedly caused the stock market to rebound at the end of the day today from the increase in Kleenex stock, I don't think you can call it a bad day. I've still found time to smile, laugh and enjoy the "little things" in life. I still tell myself that I feel great, am not symptomatic and can / will beat this. Another obstacle I was hoping I didn't have to face, but just another event that I would not allow to "ruin" this day.
More updates as they unfold...
Love,
Tony
Then I remember saying to take the same scenario and add that your spouse or boyfriend/girlfriend leave you a note in your car telling you how much they love and appreciate you. You get a call on your cell (during the traffic jam) from a friend you haven't heard from in years and have a great talk "catching up". A co-worker lets you borrow their umbrella so you don't get wet walking into work and the receptionist compliments you on how nice you look that day (except for the juice on your shirt). And to top it off, you get an unexpected small bonus for a recent job well done at work. Now what kind of day are you going to have--it's still raining, you still stubbed your toe, burnt breakfast and were late for work. All of those things will be forgotten and I would venture to say this would be considered a "good day" and you would go through the day with a positive attitude and smile on your face.
Then I would ramble on and on while watching people doze off and finally would conclude saying something about how we allow the events in our lives dictate our attitude. No matter what kind of day we are having, we choose how we are going to live that day. I have tried over the years to practice what I preach, live the day as it comes, and stay positive no matter what comes my way. I think I would give myself a good grade overall if I had to grade myself. I would by no means give myself the positive attitude of the year award, but I would say I do a pretty good job.
So my day started today without rain or a stubbed toe. I didn't burn breakfast or spill juice on my shirt. I did however get a call from a friend, my oncologist, Dr. Helft. We did have a long talk catching up on where I stand. Unfortunately his news was not good. Basically all of my tumors have grown--in the liver and in the lungs. They also found a new spot in a lymph node in my chest. I'm not sure I can describe my disappointment nor how saddened I am about the news. I think all of you following my story knew how important this scan was for me. For some reason the results I was hoping for (no change or reduction in tumor growth) was not meant to be.
As always my plan right now is to take a day or two to get through the emotions, make some calls to doctors, clinics, etc. and talk through this with Crystal and my family. Then I bounce back and start swinging again.
I know I have some options and will outline those in the days to come. As I've said before and will continue to say, I'm not giving up on the sodium bicarb but I also don't have time to waste trying to continue to sell this idea to my doctors here. My naturopath may have discovered why I was having pain during my sodium bicarb treatments so we will be quickly investigating her findings and how to counteract that pain in the future. Time is becoming an important factor and I obviously need to get the growth stopped as quickly as possible.
So did I have a "bad day"? Considering that we single handedly caused the stock market to rebound at the end of the day today from the increase in Kleenex stock, I don't think you can call it a bad day. I've still found time to smile, laugh and enjoy the "little things" in life. I still tell myself that I feel great, am not symptomatic and can / will beat this. Another obstacle I was hoping I didn't have to face, but just another event that I would not allow to "ruin" this day.
More updates as they unfold...
Love,
Tony
Monday, September 15, 2008
Waiting patiently...
I've been a little quite lately, but honestly there has not been much to update. Since getting the catheter out I have tried to get back to some normalcy. I have some aches and pains here and there and my right leg is remembering how to function again. I'm not quite up to running drills, but I can at least do stairs now without using a railing. Each day gets better...dare I say I'm ready for some more :).
I've had many people ask me today about my scan results, but I have not heard from the doctor yet. I could have "pushed" the issue today by calling the doctor, but honestly I needed to get some work done today. I've probably been through close to a dozen of these scans now in the past few years and I know good news or bad it's very hard to focus the rest of the day after you get the news. I know the results are not changing no matter when I get them.
I know for sure I will get them tomorrow. I will send an update with the news. Thanks for all the continued support.
Love,
Tony
I've had many people ask me today about my scan results, but I have not heard from the doctor yet. I could have "pushed" the issue today by calling the doctor, but honestly I needed to get some work done today. I've probably been through close to a dozen of these scans now in the past few years and I know good news or bad it's very hard to focus the rest of the day after you get the news. I know the results are not changing no matter when I get them.
I know for sure I will get them tomorrow. I will send an update with the news. Thanks for all the continued support.
Love,
Tony
Tuesday, September 9, 2008
Just another day...
Woke up in my own bed this morning, showered, ate breakfast, and went to work. Although that is a normal daily routine, it felt a little awkward after 12 days in bed. I'm a little tired tonight since the hospital decided to keep me until midnight for "observation", but wanted to at least give a quick update.
I did go to my naturopath today and we pushed sodium bicarb through my venous port in my chest. I wanted to see if I would have any reaction and I didn't. Not sure if going through the venous port is effective, but I figured it couldn't hurt. Dr. Simoncini did say I could use the port and it may help my lungs.
So they next step is a scan on Friday. Not sure when I will get the results. Could be Friday, Saturday or Monday. My oncologist is going to call me when he gets the results. We'll see what happens.
Big week...stay tuned.
Tony
I did go to my naturopath today and we pushed sodium bicarb through my venous port in my chest. I wanted to see if I would have any reaction and I didn't. Not sure if going through the venous port is effective, but I figured it couldn't hurt. Dr. Simoncini did say I could use the port and it may help my lungs.
So they next step is a scan on Friday. Not sure when I will get the results. Could be Friday, Saturday or Monday. My oncologist is going to call me when he gets the results. We'll see what happens.
Big week...stay tuned.
Tony
Monday, September 8, 2008
A day off, but (WARNING) time to get on my soap box…
As scheduled, I took the day off Saturday to give my body a chance to rest. I woke up Sunday to an e-mail from my friend Odilia in the Netherlands. She sent me a link to watch Dr. Simoncini’s presentation in LA at a Cancer Convention this past week. I watched this and the “Stand Up to Cancer” program all the networks aired on Friday night.
First Dr. Simoncini’s presentation… Every time I hear him he gives me more hope. Even after lying in bed for almost two weeks, if I don’t get the results I want, I will still believe in what he is doing. What he says is so logical and the testimonials he has are amazing. Most of the people in his testimonials had very severe cancer and had long treatments with sodium bicarb (up to 9 months for one patient), but all had the same result—complete cure. I don’t know what else is in store for me with sodium bicarb, but I do know I won’t quit trying to use his methods.
On the other side of the fence was the “Stand Up to Cancer” program. Although I applaud the networks for airing a program for awareness, I also get a little angry that so many “powerful” people are so blinded by orthodox cancer treatment and research. Here you have Dr. Simoncini who is curing people on a regular basis and no one seems to know about him. I know it’s not that most people don’t care or actually want a cure, but call me crazy, we have all been trained to believe this is an incurable disease and I believe that’s want big government, big pharmas want.
I know statistics are skewed to help show that cancer rates are declining, but that is not true. Numbers and “causes of death” can be altered to make the general public believe anything you want them to believe. I was curious to see what the networks were “allowed” to show Friday. Why? Here’s an excerpt from some of my research:
“ as this article is being written, General Electric owns 80% of the NBC network. General Electric also owns 14 major NBC affiliates. General Electric's partner, Telemundo (which owns the other 20% of NBC), owns 16 major television stations. By the way, GE now owns Telemundo.
Why is this significant? General Electric has a major division called: "GE Healthcare." This division includes "GE Medical Systems Information Technologies," "GE Healthcare Cintricity Pharmacy" (which has sold about 6 billion prescriptions) and other orthodox health related organizations.
All of these organizations, and many more, are heavily involved in orthodox medicine. Thus, the same company, General Electric, has major ownership in both the media and orthodox medicine.
CBS has a longstanding advertising policy that prohibits the sale of advertising time for the advocacy of viewpoints on controversial issues of public importance. In other words, they can censor any advertisement they want.”
Did you know that the pharmaceutical companies spend $3 Billion per year on advertising? Did you know that 42% of our US Senators own stock in the pharmaceutical industry? That’s why I wondered what they would show on tv.
I hope I’m wrong, but I’m a cancer patient who believes so strongly that there is a cure, but feels like the truth is not always revealed or “they” don’t want to know the truth. I could go on and on, but my point is that the way we go about “curing” cancer in America is so illogical to me. I agree we have some drugs that can be effective, but there are so many more options that are available too that are not even considered. Obviously I turn back to Dr. Simoncini as an example. If he has cured one patient from cancer why would you not consider looking into his treatment for all cancer patients. He’s been doing this for years now with proven results and not only did they not look into his methods, but they banned him from practicing medicine. Is it just me or does that make no sense at all? When the US is willing to consider treatments like Dr. Simoncini’s immediately, then they prove to me that we are willing to Stand Up to Cancer. Until then, it’s more of the same.
As for me…I’m getting my catheter out Monday. I think the disappointment has hit me, especially after seeing Dr. Simoncini’s presentation. I’m having pain in my chest and throat when I push the sodium bicarb so it’s time for me to stop. I made it 12 days in bed, 7 good treatments of sodium bicarb, and 2 days of minimal amounts. My surgeon sent me an e-mail saying she is crossing her fingers for me and that I should remember I still have other options. She knows how much I want this. I’ll need a day to recover physically and emotionally from this and then go on to the next step which will be a scan. Should be an eventful and anxious week.
More updates to come…
Love,
Tony
First Dr. Simoncini’s presentation… Every time I hear him he gives me more hope. Even after lying in bed for almost two weeks, if I don’t get the results I want, I will still believe in what he is doing. What he says is so logical and the testimonials he has are amazing. Most of the people in his testimonials had very severe cancer and had long treatments with sodium bicarb (up to 9 months for one patient), but all had the same result—complete cure. I don’t know what else is in store for me with sodium bicarb, but I do know I won’t quit trying to use his methods.
On the other side of the fence was the “Stand Up to Cancer” program. Although I applaud the networks for airing a program for awareness, I also get a little angry that so many “powerful” people are so blinded by orthodox cancer treatment and research. Here you have Dr. Simoncini who is curing people on a regular basis and no one seems to know about him. I know it’s not that most people don’t care or actually want a cure, but call me crazy, we have all been trained to believe this is an incurable disease and I believe that’s want big government, big pharmas want.
I know statistics are skewed to help show that cancer rates are declining, but that is not true. Numbers and “causes of death” can be altered to make the general public believe anything you want them to believe. I was curious to see what the networks were “allowed” to show Friday. Why? Here’s an excerpt from some of my research:
“ as this article is being written, General Electric owns 80% of the NBC network. General Electric also owns 14 major NBC affiliates. General Electric's partner, Telemundo (which owns the other 20% of NBC), owns 16 major television stations. By the way, GE now owns Telemundo.
Why is this significant? General Electric has a major division called: "GE Healthcare." This division includes "GE Medical Systems Information Technologies," "GE Healthcare Cintricity Pharmacy" (which has sold about 6 billion prescriptions) and other orthodox health related organizations.
All of these organizations, and many more, are heavily involved in orthodox medicine. Thus, the same company, General Electric, has major ownership in both the media and orthodox medicine.
CBS has a longstanding advertising policy that prohibits the sale of advertising time for the advocacy of viewpoints on controversial issues of public importance. In other words, they can censor any advertisement they want.”
Did you know that the pharmaceutical companies spend $3 Billion per year on advertising? Did you know that 42% of our US Senators own stock in the pharmaceutical industry? That’s why I wondered what they would show on tv.
I hope I’m wrong, but I’m a cancer patient who believes so strongly that there is a cure, but feels like the truth is not always revealed or “they” don’t want to know the truth. I could go on and on, but my point is that the way we go about “curing” cancer in America is so illogical to me. I agree we have some drugs that can be effective, but there are so many more options that are available too that are not even considered. Obviously I turn back to Dr. Simoncini as an example. If he has cured one patient from cancer why would you not consider looking into his treatment for all cancer patients. He’s been doing this for years now with proven results and not only did they not look into his methods, but they banned him from practicing medicine. Is it just me or does that make no sense at all? When the US is willing to consider treatments like Dr. Simoncini’s immediately, then they prove to me that we are willing to Stand Up to Cancer. Until then, it’s more of the same.
As for me…I’m getting my catheter out Monday. I think the disappointment has hit me, especially after seeing Dr. Simoncini’s presentation. I’m having pain in my chest and throat when I push the sodium bicarb so it’s time for me to stop. I made it 12 days in bed, 7 good treatments of sodium bicarb, and 2 days of minimal amounts. My surgeon sent me an e-mail saying she is crossing her fingers for me and that I should remember I still have other options. She knows how much I want this. I’ll need a day to recover physically and emotionally from this and then go on to the next step which will be a scan. Should be an eventful and anxious week.
More updates to come…
Love,
Tony
Saturday, September 6, 2008
Half way home???
We're starting day 10 and I have decided to take a day off from sodium bicarb. Although I hate to "waste" a day in bed with the catheter I also feel like it's important to give my body some chance to stabilize.
I obviously didn't go to the IU Med Center yesterday...I'm waiting for the hospital police to come get me any minute now. We did try to push sodium bicarb yesterday, but the pain returned. In all honesty I probably could have forced it in, although it would have taken several hours I'm sure. Instead, I decided to stop after about 100mls and call it a day. We will take a break today and see what Sunday brings. Same old story...if there is pain, maybe it's time to call it quits, if not I'll continue into next week day by day.
My cousin Shane and his wife Christi are coming over from Cincinnati so looking forward to the day today. I have the NFL tomorrow to keep me company, so don't think the weekend will be to bad. Without doubt I will be pulling the plug next Friday--if I get there. I feel like if I make it to Friday I will feel comfortable that I gave sodium bicarb a good run. My next scan is not scheduled, but I will have one soon after the catheter is pulled.
More updates as they come...
Love,
Tony
I obviously didn't go to the IU Med Center yesterday...I'm waiting for the hospital police to come get me any minute now. We did try to push sodium bicarb yesterday, but the pain returned. In all honesty I probably could have forced it in, although it would have taken several hours I'm sure. Instead, I decided to stop after about 100mls and call it a day. We will take a break today and see what Sunday brings. Same old story...if there is pain, maybe it's time to call it quits, if not I'll continue into next week day by day.
My cousin Shane and his wife Christi are coming over from Cincinnati so looking forward to the day today. I have the NFL tomorrow to keep me company, so don't think the weekend will be to bad. Without doubt I will be pulling the plug next Friday--if I get there. I feel like if I make it to Friday I will feel comfortable that I gave sodium bicarb a good run. My next scan is not scheduled, but I will have one soon after the catheter is pulled.
More updates as they come...
Love,
Tony
Thursday, September 4, 2008
Quick update on Christmas Day...
We have two Christmas Days in the Feller household. The first (and the most important--winning by a hair) is December 25th. The second Christmas is the start of the NFL season. The day came today and as usual, I was very antsy until the start of the 7:00 kick-off. Day 8 was one of the longest days in bed yet.
My plan remained the same....push sodium bicarb early afternoon. If I had pain...we stop and make the doctors appointment tomorrow to get the catheter out. No pain...I would continue tomorrow with the same plan as today. Verdict today was another day of no pain. We only did 250mls, but we got it in successfully.
Decision time comes tomorrow. The IU Med Center is expecting to see me tomorrow. What they don't know is I'm not coming back unless my pain returns. The question then becomes; do I continue treatment until the pain returns, do I take a couple days off and continue treatment all next week, etc. I feel like my body needs a chance to "flush" and get back to normal, but at the same time I hate to sit in bed for a day or two without doing any treatment. I plan to call my naturopath tomorrow to see if she has any suggestions. Right now I'm thinking about pushing more than 250ml tomorrow, take two days off, and go again next week (day by day of course). Dr. Simoncini wanted me to do two cycles (8 on, 6 off, 8 on). If I do my plan it would be (7 on, 2 off, 5 on)--abbreviated I know, but I would feel like I gave this a good shot.
We'll see...if you don't know by now, things can change in a hurry around here. I'll continue to take a day at a time and see what happens.
Love,
Tony
My plan remained the same....push sodium bicarb early afternoon. If I had pain...we stop and make the doctors appointment tomorrow to get the catheter out. No pain...I would continue tomorrow with the same plan as today. Verdict today was another day of no pain. We only did 250mls, but we got it in successfully.
Decision time comes tomorrow. The IU Med Center is expecting to see me tomorrow. What they don't know is I'm not coming back unless my pain returns. The question then becomes; do I continue treatment until the pain returns, do I take a couple days off and continue treatment all next week, etc. I feel like my body needs a chance to "flush" and get back to normal, but at the same time I hate to sit in bed for a day or two without doing any treatment. I plan to call my naturopath tomorrow to see if she has any suggestions. Right now I'm thinking about pushing more than 250ml tomorrow, take two days off, and go again next week (day by day of course). Dr. Simoncini wanted me to do two cycles (8 on, 6 off, 8 on). If I do my plan it would be (7 on, 2 off, 5 on)--abbreviated I know, but I would feel like I gave this a good shot.
We'll see...if you don't know by now, things can change in a hurry around here. I'll continue to take a day at a time and see what happens.
Love,
Tony
Wednesday, September 3, 2008
Always something different...
Before I begin tonight I have a couple announcements:
1) I have a Fraternity brother in Texas whose wife has a baby clothes business. He and his wife have offered to give 25% of the sales in September to the Feller Treatment fund. I'm not much of a marketer, but really appreciate what they are doing and want to announce it here on my "blog" and my website. The website is below, if you have a baby, want a baby, thinking about a baby, saw a baby, etc. maybe you'll find something of interest:
http://www.pimathreads.com/
2) I have had many people asking what they could do to help. If there is anyone out there with some computer skills I could use your assistance. I'm trying to get a couple of videos on the website via YouTube or GoogleVideo and can't seem to make it happen. The videos are from the fundraiser which many of you attended and are very good. I just want to share them with everyone. Send me an e-mail or call me if you think you can help.
Ok...now my update.
First I want to clarify that the picture on this journal of me in bed was my wonderful wife's idea. My friends the Petruska's asked if my pillow was Mickey Mouse or race cars. In case anyone else is wondering it is a "city vehicle" (police cars, taxi, ambulance, etc.) pillow, but I like the idea of race cars to go with my fast pace lifestyle right now.
Last night I spoke with my naturopath about my pain. Long story short her recommendation was if I'm having pain--stop. There can be some serious issues with over alkalizing your body, plus she's always been one to talk some sense in to me when I attempt to tolerate pain. She always reminds me that pain is the body's way of telling me something. Today my day started with a call from my doctor's nurse basically saying they have no idea why I am having pain. Of course the prognosis was that it could be a variety of things. I got off the phone knowing I had made no progress. Started reading my e-mails and had an e-mail from the lady in Florida that gave me Dr. Simoncini's phone number. She had stopped the sodium bicarb treatment because she was getting "fibrosis" in her breast (she has breast cancer). I'm not exactly sure what her definition of fibrosis is, but from what I know fibrosis isn't a good thing. I haven't heard from her in almost three months and out of the blue I get an e-mail from her about an issue she is having with sodium bicarb.
I'm sure I've said it a million times, but I don't believe in coincidences. I looked at my aunt Betty and said "this is as close to a slap in the face as I'm going to get that I need to stop this." I decided that I'm going to do a treatment today, but if I have any pain I'll stop and get the catheter pulled out tomorrow. I didn't really have a feeling of disappointment...for some reason I had a sense of calm about the whole situation.
So aunt Betty mixed my bag. I started the injection and.......no pain after 40mls, 80mls, 120 mls, etc. until 250 mls. Go figure. So back to square one. Taking a day at a time. If tomorrow goes well we'll see what happens Friday and so on and so on. One thing I know for sure is each day is always something different.
Day 7 almost in the books...we'll see what tomorrow brings.
Love,
Tony
1) I have a Fraternity brother in Texas whose wife has a baby clothes business. He and his wife have offered to give 25% of the sales in September to the Feller Treatment fund. I'm not much of a marketer, but really appreciate what they are doing and want to announce it here on my "blog" and my website. The website is below, if you have a baby, want a baby, thinking about a baby, saw a baby, etc. maybe you'll find something of interest:
http://www.pimathreads.com/
2) I have had many people asking what they could do to help. If there is anyone out there with some computer skills I could use your assistance. I'm trying to get a couple of videos on the website via YouTube or GoogleVideo and can't seem to make it happen. The videos are from the fundraiser which many of you attended and are very good. I just want to share them with everyone. Send me an e-mail or call me if you think you can help.
Ok...now my update.
First I want to clarify that the picture on this journal of me in bed was my wonderful wife's idea. My friends the Petruska's asked if my pillow was Mickey Mouse or race cars. In case anyone else is wondering it is a "city vehicle" (police cars, taxi, ambulance, etc.) pillow, but I like the idea of race cars to go with my fast pace lifestyle right now.
Last night I spoke with my naturopath about my pain. Long story short her recommendation was if I'm having pain--stop. There can be some serious issues with over alkalizing your body, plus she's always been one to talk some sense in to me when I attempt to tolerate pain. She always reminds me that pain is the body's way of telling me something. Today my day started with a call from my doctor's nurse basically saying they have no idea why I am having pain. Of course the prognosis was that it could be a variety of things. I got off the phone knowing I had made no progress. Started reading my e-mails and had an e-mail from the lady in Florida that gave me Dr. Simoncini's phone number. She had stopped the sodium bicarb treatment because she was getting "fibrosis" in her breast (she has breast cancer). I'm not exactly sure what her definition of fibrosis is, but from what I know fibrosis isn't a good thing. I haven't heard from her in almost three months and out of the blue I get an e-mail from her about an issue she is having with sodium bicarb.
I'm sure I've said it a million times, but I don't believe in coincidences. I looked at my aunt Betty and said "this is as close to a slap in the face as I'm going to get that I need to stop this." I decided that I'm going to do a treatment today, but if I have any pain I'll stop and get the catheter pulled out tomorrow. I didn't really have a feeling of disappointment...for some reason I had a sense of calm about the whole situation.
So aunt Betty mixed my bag. I started the injection and.......no pain after 40mls, 80mls, 120 mls, etc. until 250 mls. Go figure. So back to square one. Taking a day at a time. If tomorrow goes well we'll see what happens Friday and so on and so on. One thing I know for sure is each day is always something different.
Day 7 almost in the books...we'll see what tomorrow brings.
Love,
Tony
Tuesday, September 2, 2008
Little by little...
Day six in bed and you could say I'm getting a tad antsy. Crystal says that I can lay on the couch with the best of them but knows this is quite a challenge for me. Good news is that I can still report that I feel good. A few aches and pains from lying on my back, but nothing I can't handle. I have to put a brace on my right leg at night to make sure I don't bend it and that's getting annoying at night. Didn't sleep very good last night, but hard to feel sorry for a guy lying in bed all day that needs some sleep.
Yesterday I almost got 350 ml in my system. I'm having a harder time pushing the sodium bicarb right now. If I push to fast I get the chest pains I had in Italy. I got to about 325 ml last night and I had to stop. I said yesterday that I pride myself on getting through the tough times, but I also pride myself on listening to what my body is telling me. My high tolerance to pain and longing to get this treatment sometime make it difficult for me to listen to my body which is telling me to stop or fight through it. I am opting to listen these days and I know that whatever is supposed to happen will happen. I'm somewhat discouraged that I'm not getting the "full protocol" but at the same time I know any amount of sodium bicarb is better than none at all.
Today as soon as I started treatment "the pain" started. I'm getting pretty good at being my own doctor, so thought maybe my catheter has moved out of my liver cavity thus creating some pain. I called IU med to see if they had any suggestions and also asked about changing my dressing--which in my medical terms is getting a little ucky. Obviously not looking to contract an infection. I'm tentatively going back in tomorrow (my doctor was on vacation today)depending on what my doctor says---he doesn't really want me out of bed, but admits the difficulty of evaluating me from my hospital bed at home. If the catheter is dislodged then what I am doing is not going to be effective so will be hard to conclude if the sodium bicarb worked or not. We'll see what happens tomorrow.
Anyway...I stilled pushed 250 ml today. Pain is tolerable, but noticeable. The treatment just takes some time. As long as I go slow I can get through it. My aunt Betty came back today to help around the house and be with me during the day. As always it's good to have her here and of course we put her to work. I hope she doesn't decide to "unretire" after this stint with me.
We've gotten lots of encouraging e-mails over the past several days--we continue to thank all of you supporting us (not just those sending e-mails, etc.). All the support does make it easier to get through the days.
We continue to take a day at a time.
Until tomorrow...
Tony
Yesterday I almost got 350 ml in my system. I'm having a harder time pushing the sodium bicarb right now. If I push to fast I get the chest pains I had in Italy. I got to about 325 ml last night and I had to stop. I said yesterday that I pride myself on getting through the tough times, but I also pride myself on listening to what my body is telling me. My high tolerance to pain and longing to get this treatment sometime make it difficult for me to listen to my body which is telling me to stop or fight through it. I am opting to listen these days and I know that whatever is supposed to happen will happen. I'm somewhat discouraged that I'm not getting the "full protocol" but at the same time I know any amount of sodium bicarb is better than none at all.
Today as soon as I started treatment "the pain" started. I'm getting pretty good at being my own doctor, so thought maybe my catheter has moved out of my liver cavity thus creating some pain. I called IU med to see if they had any suggestions and also asked about changing my dressing--which in my medical terms is getting a little ucky. Obviously not looking to contract an infection. I'm tentatively going back in tomorrow (my doctor was on vacation today)depending on what my doctor says---he doesn't really want me out of bed, but admits the difficulty of evaluating me from my hospital bed at home. If the catheter is dislodged then what I am doing is not going to be effective so will be hard to conclude if the sodium bicarb worked or not. We'll see what happens tomorrow.
Anyway...I stilled pushed 250 ml today. Pain is tolerable, but noticeable. The treatment just takes some time. As long as I go slow I can get through it. My aunt Betty came back today to help around the house and be with me during the day. As always it's good to have her here and of course we put her to work. I hope she doesn't decide to "unretire" after this stint with me.
We've gotten lots of encouraging e-mails over the past several days--we continue to thank all of you supporting us (not just those sending e-mails, etc.). All the support does make it easier to get through the days.
We continue to take a day at a time.
Until tomorrow...
Tony
Monday, September 1, 2008
Bouncing back..
I pride myself on getting through the tough times. I know it's ok to break down every now and then, but at the same time often wonder if that gets me anywhere. The past two days have been brutal. Lots of pain, body aches, frustration, etc., and as Crystal said all while being bed ridden.
So far today, seems as if I'm bouncing back again. This is the best I have felt in a couple of days so hoping I can keep it going. We have not done a treatment yet today but plan to soon. Yesterday I was able to push 250ml (half of the 500ml protocol) through the catheter. My plan is to increase the amount each day and hope my body begins to tolerate it better. I keep telling Crystal let's take this a day at a time.
I want to thank Brenda Petruska, my aunt Betty Verkley, Donna Turner, Carol and Brad Haney, Duane and Joan Buell (and their kids), Jeff and Carletta Voegle (and their kids), and Laurie and Scott Dyer (and their kids) for helping out with the kids and making dinner the past two days. This is hard on Crystal so the help has been much appreciated. We've been back and forth the past two days on calling it quits, but I'm not willing to give up on this yet.
Obviously I want to thank Crystal too. This is hard on her too...and the kids. She continues to fight through the tough times too. You can read her frustration in the journal. She remains supportive, but hates to see me not feeling good. She made the comment yesterday that this is "just as bad as chemo." I'm not sure I'd qualify anything as being as bad as chemo, but at the time I had a hard time arguing my case.
We'll see what happens today...
Love,
Tony
So far today, seems as if I'm bouncing back again. This is the best I have felt in a couple of days so hoping I can keep it going. We have not done a treatment yet today but plan to soon. Yesterday I was able to push 250ml (half of the 500ml protocol) through the catheter. My plan is to increase the amount each day and hope my body begins to tolerate it better. I keep telling Crystal let's take this a day at a time.
I want to thank Brenda Petruska, my aunt Betty Verkley, Donna Turner, Carol and Brad Haney, Duane and Joan Buell (and their kids), Jeff and Carletta Voegle (and their kids), and Laurie and Scott Dyer (and their kids) for helping out with the kids and making dinner the past two days. This is hard on Crystal so the help has been much appreciated. We've been back and forth the past two days on calling it quits, but I'm not willing to give up on this yet.
Obviously I want to thank Crystal too. This is hard on her too...and the kids. She continues to fight through the tough times too. You can read her frustration in the journal. She remains supportive, but hates to see me not feeling good. She made the comment yesterday that this is "just as bad as chemo." I'm not sure I'd qualify anything as being as bad as chemo, but at the time I had a hard time arguing my case.
We'll see what happens today...
Love,
Tony
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