I only have a few minutes because we are wrapping up all the lose ends before we leave the clinic today. For those of you keeping track I wanted to let you know that I survived the vaccine with very little problems. I got the chills and a fever before I finished my IVs so Dr. Jacob gave me some medicine that literally knocked me out in a few minutes. I was able to sleep for a little over an hour, woke up, went to the apartment and slept for another hour, ate, and went to bed.
I woke up today feeling a little tired, but am not complaining. We packed and checked out of the apartment and are on our way to a hotel in Munich for the evening. Flight is at 6:30AM tomorrow...will be home soon.
Looking forward to seeing everyone back home again....the gang here has all left so today was very quiet.
Love,
Tony
Thursday, October 30, 2008
Wednesday, October 29, 2008
Vaccination day...
Woke up early this morning thinking that maybe I shouldn’t be completely rested to start the day today. I receive my vaccination today which is supposed to give me a fever, chills, body aches, maybe nausea, etc. Dr. Jacob has been giving people sleeping pills to help people sleep through those side effects. I thought being a little tired might help aid the sleeping pills as well. The vaccination’s purpose is to help boost my immune system and help the fight against my tumors, but I also see it as my last major procedure for this go round in Germany. I feel like once I wake up Thursday morning I will have survived this trip with relative ease. As most of you know, that has not always been the case with me, so to get results and not have major side effects is really impressive to me.
Yesterday there was not much news. The weather turned sour here…really cold and rainy, so dad and I went to my IVs in the morning and sat around the apartment most of the day. We were able to go to Salzburg on Monday which was a good change. We went with another guy whose brother is here getting treatment. I think it was good for all of us to have some new conversation and scenery. Salzburg was nice, not what I expected, but nice. There are some beautiful places to see and plenty of shopping and cafes. We only spent the day there but I would describe Salzburg as a “little Rome.” The streets are all brick with shops and cafes everywhere. Not nearly the site seeing attractions as in Rome, but seemed like just as many shops. Unfortunately this is like my own personal hell since shopping is one of my least favorite things to do. I told Steve and dad that if I were to be in hell this would be it, just raise the temperature about 50 degrees to 110. Nonetheless, it is a place worth seeing if you are nearby and I am glad we went. I’m sure I’ll take Crystal there on one of our return trips…my hell is her heaven. We walked quite a bit in Salzburg so I proved to myself that I was gaining back some of my strength. I was very tired when we returned home, but felt really good yesterday when I woke up.
Right now I am just waiting…I’ve received my three vaccination shots and ready to go. Found out yesterday that the chemo I am going on in the States is not available in the US. I guess I shouldn’t be surprised. I’m not sure why the US does not use the drug and neither is my doctor here. The drug is relatively new (5 years) so I would assume the US hasn’t performed all their tests on it yet…who knows. I try to not get angry anymore about the incompetencies of the US medical industry.
Two days and counting. Thanks again to all of you for your support to me and my family during this journey.
More updates to come.
Love,
Tony
Yesterday there was not much news. The weather turned sour here…really cold and rainy, so dad and I went to my IVs in the morning and sat around the apartment most of the day. We were able to go to Salzburg on Monday which was a good change. We went with another guy whose brother is here getting treatment. I think it was good for all of us to have some new conversation and scenery. Salzburg was nice, not what I expected, but nice. There are some beautiful places to see and plenty of shopping and cafes. We only spent the day there but I would describe Salzburg as a “little Rome.” The streets are all brick with shops and cafes everywhere. Not nearly the site seeing attractions as in Rome, but seemed like just as many shops. Unfortunately this is like my own personal hell since shopping is one of my least favorite things to do. I told Steve and dad that if I were to be in hell this would be it, just raise the temperature about 50 degrees to 110. Nonetheless, it is a place worth seeing if you are nearby and I am glad we went. I’m sure I’ll take Crystal there on one of our return trips…my hell is her heaven. We walked quite a bit in Salzburg so I proved to myself that I was gaining back some of my strength. I was very tired when we returned home, but felt really good yesterday when I woke up.
Right now I am just waiting…I’ve received my three vaccination shots and ready to go. Found out yesterday that the chemo I am going on in the States is not available in the US. I guess I shouldn’t be surprised. I’m not sure why the US does not use the drug and neither is my doctor here. The drug is relatively new (5 years) so I would assume the US hasn’t performed all their tests on it yet…who knows. I try to not get angry anymore about the incompetencies of the US medical industry.
Two days and counting. Thanks again to all of you for your support to me and my family during this journey.
More updates to come.
Love,
Tony
Monday, October 27, 2008
The three week mark...
Today marks the three week point in my first journey to Germany. The weeks go fast so I know the last four days of this trip will be gone before I know it. Dad has been here a week, like Crystal and Aunt Betty, hard to believe the week has come and gone.
I’m still moving a little slow, but overall can not complain. The inflammation in my abdomen is causing some soreness and I have what I call “the chemos”. Hard to describe the feeling, but you feel tired and a little tinglely. I am hoping that by the time I leave on Friday I will be feeling 90-100%. The IVs each day are helping my liver normalize and reduce inflammation so I am giving my body some help. Crystal had her 35th birthday yesterday, so between her birthday, Ashley’s birthday and our anniversary I need to be full strength for all the celebrations when I get home. Based on how things are going here I think celebrating this trip will be in order as well.
Dad and I haven’t really ventured out much so we are going to make a trip to Salzburg, Austria today. The trip is under two hours so getting an early start today so we can hopefully get out of the Klinik somewhere around noon. The way I see things, tomorrow will really be our last day “normal” day. Wednesday I get the vaccination which is supposed to give me flu like systems. Good news is the doctor plans to knock me out so Wednesday I’ll probably sleep most of the day. Thursday we will do IVs and go to Munich so we are close to the airport for our early flight Friday.
I give dad credit; he has been doing a good job with his German. We know enough to order food and get smiles from the Germans who I assume are happy we are trying to speak their language but find it humorous that we are butchering the language. Probably shouldn’t pat ourselves on the back to much though. We went to an authentic Bavarian restaurant last night and I thought I was getting grilled fish, but got some sort of grilled meat. Can’t tell you what kind of meat it was, I really didn’t want to know. They eat quite a bit of game over here so I find that not asking is the best way to go. Of course my food came with pretzels (the big kind you get at the ballpark) and potatoes. Not sure what the Germans would do if they didn’t have potatoes with a meal. I know potatoes will not be in my diet for a long time once I get home.
Not to somber the mood, but would ask all of you that are reading this to pray for the family of Gunner Gillespie. I have been following Gunner’s story for several months now and he passed away a few days ago. Gunner was eight years old little boy from Kentucky who had a rare form of brain cancer (DIPG). Although I never met him, he seemed like he had an incredible spirit and was so brave through his battle. Hearing about his death and having yet another victim of cancer deeply saddens me. We have got to figure this cancer thing out.
More updates to come….
Love,
Tony
I’m still moving a little slow, but overall can not complain. The inflammation in my abdomen is causing some soreness and I have what I call “the chemos”. Hard to describe the feeling, but you feel tired and a little tinglely. I am hoping that by the time I leave on Friday I will be feeling 90-100%. The IVs each day are helping my liver normalize and reduce inflammation so I am giving my body some help. Crystal had her 35th birthday yesterday, so between her birthday, Ashley’s birthday and our anniversary I need to be full strength for all the celebrations when I get home. Based on how things are going here I think celebrating this trip will be in order as well.
Dad and I haven’t really ventured out much so we are going to make a trip to Salzburg, Austria today. The trip is under two hours so getting an early start today so we can hopefully get out of the Klinik somewhere around noon. The way I see things, tomorrow will really be our last day “normal” day. Wednesday I get the vaccination which is supposed to give me flu like systems. Good news is the doctor plans to knock me out so Wednesday I’ll probably sleep most of the day. Thursday we will do IVs and go to Munich so we are close to the airport for our early flight Friday.
I give dad credit; he has been doing a good job with his German. We know enough to order food and get smiles from the Germans who I assume are happy we are trying to speak their language but find it humorous that we are butchering the language. Probably shouldn’t pat ourselves on the back to much though. We went to an authentic Bavarian restaurant last night and I thought I was getting grilled fish, but got some sort of grilled meat. Can’t tell you what kind of meat it was, I really didn’t want to know. They eat quite a bit of game over here so I find that not asking is the best way to go. Of course my food came with pretzels (the big kind you get at the ballpark) and potatoes. Not sure what the Germans would do if they didn’t have potatoes with a meal. I know potatoes will not be in my diet for a long time once I get home.
Not to somber the mood, but would ask all of you that are reading this to pray for the family of Gunner Gillespie. I have been following Gunner’s story for several months now and he passed away a few days ago. Gunner was eight years old little boy from Kentucky who had a rare form of brain cancer (DIPG). Although I never met him, he seemed like he had an incredible spirit and was so brave through his battle. Hearing about his death and having yet another victim of cancer deeply saddens me. We have got to figure this cancer thing out.
More updates to come….
Love,
Tony
Saturday, October 25, 2008
Still making progress...
The chemoembolism treatment I had on Tuesday played havoc on my system so I've been slow going this week. Have not really felt good, but overall still able to function. I have no reason to complain though based on the results we have gotten.
Dr. Jacob believes we have made a 15-20% reduction in my tumor mass based on the MRI results from before my first chemoembolism treatment to the MRI before I had the second chemoembolism treatment. This is obviously good news, but the doctors also had some concerns about the tumors shrinking to quickly. I, of course, don't think we can get rid of these things fast enough but apparently I can produce toxins that would open up additional treatment needs if the masses decrease to fast. As of now, the doctors are happy with the progress and feel like we are on the right path.
I had another ultrasound today to see what differences we could see from the second chemoembolism treatment. More good news...continued narcosis and reduction in tumor masses. My liver continues to get smaller---we could actually see the entire right side of my liver on one screen (which we couldn't do three weeks ago). I am having some soreness near my hepatic artery pump, but Dr. Jacob believes the pain is coming from some tissue inflammation surrounding my pump. This is actually a good thing...shows more progress in the reduction of size in my liver.
I remember the first day I was lying on the ultrasound table looking at my tumors and hearing her version of what she calls my "potato field". I smile now on that table as she shows me the progress we have made. I've always felt like I can read people fairly well and over the past four years I have used that skill to read doctors as they give me news. Dr. Jacob is easy to read because she tells you the reality, good or bad, but nonetheless I could see the excitement in her face during the ultrasound today. She says this is very good news and very good progress especially after only three weeks of treatment. At the same time she reminded me that I still have many other treatments that I have not started yet (the vaccination, the antibodies, and the oral chemo) which she believes will only add to our success.
We also discussed my return date to Germany which looks like will be the end of January. She wants to put something on the calendar with Dr. Vogl. Sounds like the return trip would only last 7-10 days. Another chemoembolism treatment and some supportive IVs for my liver and lungs after the treatment. I also plan to get my hepatic artery pump taken out when I return to the States. No doctor in Italy or in Germany has liked this pump--it's been called stupid, shit, dumb, etc., etc--and Dr. Jacob has convinced me to take it out. I've talked to my surgeon already and she is willing to take it out when I get home. Dr. Jacob believes the metal in my body is hindering my progress. The procedure sounds fairly simple (my surgeon also thinks cutting out 25% of my liver is simple too), but I have to believe that it is because it will be an outpatient procedure. Something else to look forward to...actually will be nice not to see it or feel it...has always been a constant reminder for me of what I am dealing with. The scar will become a battle wound and a reminder of how far I've come.
Emotionally this has been a very good three weeks. I know I still have a long way to go, but for the first time in a long time I feel like we are on the right path. Prayers, love, support, hope, and faith are all key ingredients to fighting cancer. I've gotten a large dose of hope here in Germany.
More updates to come...
Love,
Tony
Dr. Jacob believes we have made a 15-20% reduction in my tumor mass based on the MRI results from before my first chemoembolism treatment to the MRI before I had the second chemoembolism treatment. This is obviously good news, but the doctors also had some concerns about the tumors shrinking to quickly. I, of course, don't think we can get rid of these things fast enough but apparently I can produce toxins that would open up additional treatment needs if the masses decrease to fast. As of now, the doctors are happy with the progress and feel like we are on the right path.
I had another ultrasound today to see what differences we could see from the second chemoembolism treatment. More good news...continued narcosis and reduction in tumor masses. My liver continues to get smaller---we could actually see the entire right side of my liver on one screen (which we couldn't do three weeks ago). I am having some soreness near my hepatic artery pump, but Dr. Jacob believes the pain is coming from some tissue inflammation surrounding my pump. This is actually a good thing...shows more progress in the reduction of size in my liver.
I remember the first day I was lying on the ultrasound table looking at my tumors and hearing her version of what she calls my "potato field". I smile now on that table as she shows me the progress we have made. I've always felt like I can read people fairly well and over the past four years I have used that skill to read doctors as they give me news. Dr. Jacob is easy to read because she tells you the reality, good or bad, but nonetheless I could see the excitement in her face during the ultrasound today. She says this is very good news and very good progress especially after only three weeks of treatment. At the same time she reminded me that I still have many other treatments that I have not started yet (the vaccination, the antibodies, and the oral chemo) which she believes will only add to our success.
We also discussed my return date to Germany which looks like will be the end of January. She wants to put something on the calendar with Dr. Vogl. Sounds like the return trip would only last 7-10 days. Another chemoembolism treatment and some supportive IVs for my liver and lungs after the treatment. I also plan to get my hepatic artery pump taken out when I return to the States. No doctor in Italy or in Germany has liked this pump--it's been called stupid, shit, dumb, etc., etc--and Dr. Jacob has convinced me to take it out. I've talked to my surgeon already and she is willing to take it out when I get home. Dr. Jacob believes the metal in my body is hindering my progress. The procedure sounds fairly simple (my surgeon also thinks cutting out 25% of my liver is simple too), but I have to believe that it is because it will be an outpatient procedure. Something else to look forward to...actually will be nice not to see it or feel it...has always been a constant reminder for me of what I am dealing with. The scar will become a battle wound and a reminder of how far I've come.
Emotionally this has been a very good three weeks. I know I still have a long way to go, but for the first time in a long time I feel like we are on the right path. Prayers, love, support, hope, and faith are all key ingredients to fighting cancer. I've gotten a large dose of hope here in Germany.
More updates to come...
Love,
Tony
Thursday, October 23, 2008
A little down today...
I'm going to keep this one short today because I'm not feeling that great today. The steroids are wearing off from the chemoembolism treatment I had on Tuesday so my body is struggling a little. I finished my IVs for the day and feeling a little better, but this is by far the worst I have felt since I have been here. I think all of this is expected so no worries, just need to get through the next couple of days and then I will be ok.
To make matters worse I received news today that I need to stay here longer. The hardest part about being here is being away from Crystal and the kids. They are my life line and play a big part in my healing process. I came here for a reason though and I will stay as long as necessary to complete the treatments I need.
I was supposed to get my vaccination today and leave Monday, but the monocytes (which I mentioned in a previous journal entry) in my blood were so low. The good news is after we drew blood on Monday we had enough monocytes to create the vaccine. The bad news is they need to culture for several days before they can make the vaccine. So we are now scheduled to get the vaccine on Wednesday. She wanted me to stay Thursday for observation and I will fly home with dad on Friday, Oct. 31st. I was counting the days and was down to four until today. Back up to eight now, which is discouraging, but not the end of the world. Based on the way I am feeling today I'm not sure I could have gotten my vaccine anyway.
I will update everyone later on the progress. The news I continue to recieve is positive so obviously my spirits remain positive.
More updates to come.
Love,
Tony
To make matters worse I received news today that I need to stay here longer. The hardest part about being here is being away from Crystal and the kids. They are my life line and play a big part in my healing process. I came here for a reason though and I will stay as long as necessary to complete the treatments I need.
I was supposed to get my vaccination today and leave Monday, but the monocytes (which I mentioned in a previous journal entry) in my blood were so low. The good news is after we drew blood on Monday we had enough monocytes to create the vaccine. The bad news is they need to culture for several days before they can make the vaccine. So we are now scheduled to get the vaccine on Wednesday. She wanted me to stay Thursday for observation and I will fly home with dad on Friday, Oct. 31st. I was counting the days and was down to four until today. Back up to eight now, which is discouraging, but not the end of the world. Based on the way I am feeling today I'm not sure I could have gotten my vaccine anyway.
I will update everyone later on the progress. The news I continue to recieve is positive so obviously my spirits remain positive.
More updates to come.
Love,
Tony
Wednesday, October 22, 2008
Changing of the guards and another trip to Frankfurt
The past two days have been extremely busy, so busy I have not had time to journal which is usually one of my higher priorities. I know there are so many people “rooting” for me back home so my way of giving right now is to keep everyone updated. Crystal and I receive messages daily from people as well as keep up with the “Guestbook” entries. I want to thank all of you who write, pray, and continue to keep us in your thoughts. I have always said and will continue to say that cancer patients can not win their battles alone—I am convinced the support I have received over the past four years has helped get me where I am today.
Dad arrived Monday to the welcoming party of no one. Betty and I ran into traffic and his plane arrived early so he was at the airport for about 30 minutes before we arrived. I felt badly about it, but put him to work renewing our rental car before we arrived. He didn’t think he was tired, but after the drive home, my IVs, a trip to the grocery, a walk around the lake, and some ice cream we headed back to the apartment and he was out in less than a minute. He woke up for a movie after I went out for something to eat and we went to bed around 10:30.
Tuesday was an early morning and another long day in Frankfurt. We had a car so decided to skip the expensive cab ride and make the trek ourselves. The roads here are very similar to the US, except everyone goes very fast (and it’s legal!!). I was in heaven driving on the autobahn at average speeds of 145 km/hour (90 mph) with a top speed of 200 km/hr (125 mph). I would like to thank whoever invented the autobahn—what fun. We would have them piling up like pancakes if we every tried something similar on I-70 or 465. Everyone here are very good drivers, trucks stay in the right lane and if you are in the left lane you better be passing. No matter how fast you are going someone is always going faster and they get on top of you in a hurry. I would also like to thank whoever invented the GPS systems because we went straight to the hospital, but I am certain we would have never found where we needed to be without the GPS. The city streets of Frankfurt are a tad confusing.
We saw Dr. Vogl on time and he did his thing…let’s say his efficiency was well above average yesterday. We all joke here that he does not allow much time for the anesthesia to work. He actually walked out of the room for a moment after he gave me my injection. I was happy that I would have a fighting chance to get the anesthesia to work but I was a little worried when the room began to spin and I was alone with no one around. He came back in took out his scalpel and made the incision. This is about the time he asks you if you can feel anything (which of course is to late). I told him “besides the incision he just made and the blood running down my leg I don’t feel a thing”. He knew I was kidding (even though I was only half joking), he has a good sense of humor. I’ve made it a general rule to try to keep things light in an operating room in hopes they will take better care of me. As I mentioned before, the procedure went quickly with no problems and we were off to recovery within minutes.
The good news continued from Frankfurt as my scan results came back positive. Dr. Vogl’s exact words were the tumors are smaller and less aggressive in both my liver and my lungs from the previous scan. He, liked Dr. Jacob, seemed pleased with the progress. I didn’t have a radiologist report (hoping to get that in the next day or two), so I asked him in his opinion if the progress small, medium, or large. He said he would classify it as medium. Regardless of knowing the exact scan results I feel like we are on the right track and making progress. I asked him if I needed to come back before February and he didn’t think so, but didn’t want to confirm that until we continued to monitor my progress.
We got home last night a little past 11:00 pm. Dad was initiated on the autobahn with darkness, rain, construction, and some misunderstood road signs so his drive home was not as fun. Nonetheless we made the trip home without any snags, just took us a little longer. We were in no hurry and happy from the news so enjoyed the ride as much as possible. I went to bed soon after we got home, dad stayed up a little longer. The wild ride home, plus the time difference he’s still not adjusted to kept him up a little longer.
I slept last night with a little bigger smile than usual on my face. We’ll see what Dr. Jacob has to say today.
More updates to come.
Love,
Tony
Dad arrived Monday to the welcoming party of no one. Betty and I ran into traffic and his plane arrived early so he was at the airport for about 30 minutes before we arrived. I felt badly about it, but put him to work renewing our rental car before we arrived. He didn’t think he was tired, but after the drive home, my IVs, a trip to the grocery, a walk around the lake, and some ice cream we headed back to the apartment and he was out in less than a minute. He woke up for a movie after I went out for something to eat and we went to bed around 10:30.
Tuesday was an early morning and another long day in Frankfurt. We had a car so decided to skip the expensive cab ride and make the trek ourselves. The roads here are very similar to the US, except everyone goes very fast (and it’s legal!!). I was in heaven driving on the autobahn at average speeds of 145 km/hour (90 mph) with a top speed of 200 km/hr (125 mph). I would like to thank whoever invented the autobahn—what fun. We would have them piling up like pancakes if we every tried something similar on I-70 or 465. Everyone here are very good drivers, trucks stay in the right lane and if you are in the left lane you better be passing. No matter how fast you are going someone is always going faster and they get on top of you in a hurry. I would also like to thank whoever invented the GPS systems because we went straight to the hospital, but I am certain we would have never found where we needed to be without the GPS. The city streets of Frankfurt are a tad confusing.
We saw Dr. Vogl on time and he did his thing…let’s say his efficiency was well above average yesterday. We all joke here that he does not allow much time for the anesthesia to work. He actually walked out of the room for a moment after he gave me my injection. I was happy that I would have a fighting chance to get the anesthesia to work but I was a little worried when the room began to spin and I was alone with no one around. He came back in took out his scalpel and made the incision. This is about the time he asks you if you can feel anything (which of course is to late). I told him “besides the incision he just made and the blood running down my leg I don’t feel a thing”. He knew I was kidding (even though I was only half joking), he has a good sense of humor. I’ve made it a general rule to try to keep things light in an operating room in hopes they will take better care of me. As I mentioned before, the procedure went quickly with no problems and we were off to recovery within minutes.
The good news continued from Frankfurt as my scan results came back positive. Dr. Vogl’s exact words were the tumors are smaller and less aggressive in both my liver and my lungs from the previous scan. He, liked Dr. Jacob, seemed pleased with the progress. I didn’t have a radiologist report (hoping to get that in the next day or two), so I asked him in his opinion if the progress small, medium, or large. He said he would classify it as medium. Regardless of knowing the exact scan results I feel like we are on the right track and making progress. I asked him if I needed to come back before February and he didn’t think so, but didn’t want to confirm that until we continued to monitor my progress.
We got home last night a little past 11:00 pm. Dad was initiated on the autobahn with darkness, rain, construction, and some misunderstood road signs so his drive home was not as fun. Nonetheless we made the trip home without any snags, just took us a little longer. We were in no hurry and happy from the news so enjoyed the ride as much as possible. I went to bed soon after we got home, dad stayed up a little longer. The wild ride home, plus the time difference he’s still not adjusted to kept him up a little longer.
I slept last night with a little bigger smile than usual on my face. We’ll see what Dr. Jacob has to say today.
More updates to come.
Love,
Tony
Sunday, October 19, 2008
Another NFL Sunday...
I must admit besides being with Crystal, Ashley, William (and Sampson, our cat), I really do miss my couch and NFL Sundays. It is close to 1:00pm here and would be nice to have my feet up watching a couple of good games. Instead I have my feet up doing a few IVs, another day as usual.
Aunt Betty leaves tomorrow. I'm a broken record I know, but seems like she just got here. We were able to do a few things; enjoyed many different restaurants (some good, some not so good), got lost in the mountains of Austria trying to find a little town, saw a church in a nearby Bavarian town where apparently some miracles were performed, and took a walk around the lake here in Bad Wiesse. My treatments take up most of the day, but we were able to get out enough to get some activity. I am grateful she came out, but I told her today that as disappointed as I am to see her go it does mark another week closer for me to get home and for that I am happy.
Status quo on treatment today. More of the same with a little added immune boosters for my blood draw tomorrow. Dr. Jacob gave us a good education today on stem cells and the vaccination she is giving us. I get more excited as each day passes with her treatment here. She is saddened by the laws that govern the United States as well. She is very open about how long some of her treatments have been around (some 15 years), but not yet approved in the US. Makes no sense to me.
Big news today is that she wants my hepatic artery pump out. She is worried about the heavy metals in my body and knows my pump is not helping. She does not want to be doing treatment that may not be effective due to the pump. She has other concerns as well, but wanted me to look into having it removed. I have e-mailed my surgeon at home to see what she says. Dr. Jacob is going to wait three weeks to put me on chemo so she said the timing would be right to get this out as soon as I got home. I want to see how major of a procedure it is and what to expect before I make that decision, but right now I have a difficult time not following the request of Dr. Jacob.
Weather remains nice...a bit chilly, but the sun continues to shine. This place is beautiful. Miss being home tremendously...would love to watch a NFL game today. Soon, I know.
More updates to come.
Love,
Tony
Aunt Betty leaves tomorrow. I'm a broken record I know, but seems like she just got here. We were able to do a few things; enjoyed many different restaurants (some good, some not so good), got lost in the mountains of Austria trying to find a little town, saw a church in a nearby Bavarian town where apparently some miracles were performed, and took a walk around the lake here in Bad Wiesse. My treatments take up most of the day, but we were able to get out enough to get some activity. I am grateful she came out, but I told her today that as disappointed as I am to see her go it does mark another week closer for me to get home and for that I am happy.
Status quo on treatment today. More of the same with a little added immune boosters for my blood draw tomorrow. Dr. Jacob gave us a good education today on stem cells and the vaccination she is giving us. I get more excited as each day passes with her treatment here. She is saddened by the laws that govern the United States as well. She is very open about how long some of her treatments have been around (some 15 years), but not yet approved in the US. Makes no sense to me.
Big news today is that she wants my hepatic artery pump out. She is worried about the heavy metals in my body and knows my pump is not helping. She does not want to be doing treatment that may not be effective due to the pump. She has other concerns as well, but wanted me to look into having it removed. I have e-mailed my surgeon at home to see what she says. Dr. Jacob is going to wait three weeks to put me on chemo so she said the timing would be right to get this out as soon as I got home. I want to see how major of a procedure it is and what to expect before I make that decision, but right now I have a difficult time not following the request of Dr. Jacob.
Weather remains nice...a bit chilly, but the sun continues to shine. This place is beautiful. Miss being home tremendously...would love to watch a NFL game today. Soon, I know.
More updates to come.
Love,
Tony
Saturday, October 18, 2008
Schedule for next week...
All continues to go smoothly here in Germany. This has probably been the smoothest ride I have been on in some time. I'm not waiting for something to go wrong, I'm very happy that we are (knock on wood) not having any issues and hopeful that will continue.
Next week we have some more "tough" procedures. On Tuesday I go see Prf. Vogl again in Frankfurt to have another chemoembolism treatment. Since this will be the second go round, Dr. Jacob says I may have a little more difficult time tolerating the procedure (ie. more tired, run down). On Thursday I receive my vaccination that is being made from my blood. I was going to get it this week, but they could not pull enough monocytes from my blood. Monday we will take more blood and hope with two blood draws we can get enough. The monocyte is one of the killer agents in your white blood cells. I am baffled why my immune system is so low based on what I have been doing over the past year. Dr. Jacob says what I have done is ok, but my immune system is so very compromised based on the number of years my body has been fighting this disease that it does not surprise her. She is giving me thymus injections and chlorella IVs to help boost the monocyte production in my body.
The vaccine is supposed to cause a fever and chills. She actually wants you to get this reaction to help stimulate your immune system. Two of the patients had the vaccination last night and had fairly rough nights. They have recommended that I stay in the Klinik the night of my vaccine based on what they went through. I told Dr. Jacob I feel badly that I feel so good while so many people around me aren't doing so well. She told me she would make me suffer next week (partly joking of course--but we'll see).
Still on schedule to leave on the 27th. Dr. Jacob said depending on the results of the procedure next week I could probably expect to come back here in February for a week or two. She will start my chemo in the States three weeks after I get home and those results will help make future decisions as well.
Aunt Betty and I went for a long walk yesterday around the lake. The weather is getting colder, so it's becoming more difficult to be outside. The days continue to go fast though.
More updates to come...
Love,
Tony
Next week we have some more "tough" procedures. On Tuesday I go see Prf. Vogl again in Frankfurt to have another chemoembolism treatment. Since this will be the second go round, Dr. Jacob says I may have a little more difficult time tolerating the procedure (ie. more tired, run down). On Thursday I receive my vaccination that is being made from my blood. I was going to get it this week, but they could not pull enough monocytes from my blood. Monday we will take more blood and hope with two blood draws we can get enough. The monocyte is one of the killer agents in your white blood cells. I am baffled why my immune system is so low based on what I have been doing over the past year. Dr. Jacob says what I have done is ok, but my immune system is so very compromised based on the number of years my body has been fighting this disease that it does not surprise her. She is giving me thymus injections and chlorella IVs to help boost the monocyte production in my body.
The vaccine is supposed to cause a fever and chills. She actually wants you to get this reaction to help stimulate your immune system. Two of the patients had the vaccination last night and had fairly rough nights. They have recommended that I stay in the Klinik the night of my vaccine based on what they went through. I told Dr. Jacob I feel badly that I feel so good while so many people around me aren't doing so well. She told me she would make me suffer next week (partly joking of course--but we'll see).
Still on schedule to leave on the 27th. Dr. Jacob said depending on the results of the procedure next week I could probably expect to come back here in February for a week or two. She will start my chemo in the States three weeks after I get home and those results will help make future decisions as well.
Aunt Betty and I went for a long walk yesterday around the lake. The weather is getting colder, so it's becoming more difficult to be outside. The days continue to go fast though.
More updates to come...
Love,
Tony
Friday, October 17, 2008
More test results and a 10 year Anniversary.
I can not believe Friday is here again. When Crystal was here we were amazed at how quickly the time past even though we really didn’t have many “activities” to show for it. The same has been true this week with Aunt Betty. Seems like she just got here but she will be leaving in only a few days.
The biggest news of the day today is that Crystal and I are celebrating our 10th Anniversary. What a way to spend it…thousands of miles apart. The day is a reminder of how important she is to me and how lucky I have been the past ten years to partner with such an extraordinary women. I would rather be home to celebrate with her, but I am here so we can continue celebrating this day for years to come.
My chemosensitivity test came back two days ago, but it has taken me a couple of days to understand the results in order to publish them. A simple blood test cultured by a geneticist is all they use to see what antibodys, natural medications and chemos your tumors are sensitive to (which is good) or insensitive to. I am appalled that the States does not use this test and find it near criminal in my mind. The test gives you so much information and helps pinpoint what medications work best for someone. This information would alleviate putting cancer patients through the pains and sickness of chemos that may not be sensitive to their tumors. I don’t understand why we don’t have it in the States—and after seeing the results I’m angered by what I and so many cancer patients go through because this is not a test in the US “cancer box.”
There are chemosensitivity tests in the States, but they take a biopsy of your tumor. This not only is invasive, but only gives you a small picture of what is going on. A tumor mass can have different properties in different areas, so getting a small slice of a tumor will only tell you the story for that particular piece. The test here in Germany comes from the blood and gets your “cancer story” from both active and non active cancer cells travelling through your body. Amazing---this test alone was worth the trip to Germany.
There was some good news on my test and some bad news, but I think overall the test was much more positive than the doctor anticipated. My perception is that she thought the results would be much worse. Bad news is only 30% of my tumors are sensitive (which is good) to chemotherapy. That means the other 70% we will need to tackle through antibodys and embryonic cells. We found that I was insensitive to all of the chemos I have been offered at home (not that I was not sensitive to them at one time, but my body has now become resistant to them). The decision to stop chemo several months ago was a great decision because it would not have helped. There were four chemos that I was sensitive to...three are in the colon cancer family of drugs and one is an old lymphoma drug. The three colon cancer drugs I have never heard of, but Dr. Jacob says they use them for colon cancer. The really good news is that Dr. Jacob guessed correctly on two of the chemos. She had Dr. Vogl use two of the chemos in his chemoembolism treatment last week in my lungs along with the antibody, Avastin. She is now even more confident that we have made progress in my lungs like we did in my liver.
We are not going to start chemo until I get home. She says she doesn’t want to throw too much at me at once---basically my body may not be able to handle all of it. I have found that timing is very important with her, so I will start when she wants me to start. The chemo at home will most likely be in pill form in much lower doses than before. She doesn’t believe my side effects will be bad, if at all…and the best news…we know my tumors will be sensitive to it. I don’t mind going through a little suffering if I know the drugs have the potential to work. Of course she will be supporting my body through natural medications at the same time because she absolutely does not want to compromise my immune system.
The other piece of the puzzle was the antibodys. She was very concerned that I would be resistant to antibodys, which would have made this a little more difficult. The best news of the test is that I have sensitivity to the antibody thalidomide. This is an old drug (1950-1960s??) that was used to help women with nausea when they were pregnant. They have sinced stopped the use of this drug because they soon found out that these pregnant women were having babies with deformities. I could write the history here, but I’ll spare everyone the details for now---the connection though is obvious with what we know now about embryonic cells. So…30-40% of my cancer cells will respond to antibodys, in particular thalidomide. This drug will go to the cancer in my body, “mark it”, which will cause inflammation in the body. My body’s immune system will recognize the inflammation as something that needs to be destroyed and will go kill it. So along with these antibodys, having my immune system working well is just as important. That is where the natural drugs, the vaccines and photopherosis I am doing come into play.
The last piece and probably the worst news on the test is that 35% of my cells are resistant to chemo or antibodys. There are no medications I can take that will kill these cells. Good news is we have the embryonic cells that can kill these cells. Again, I will spare you the details ( I think I put some in an earlier blog). These proteins are injected into your body and will again, “mark” the cancer cells resistant to antibodys and chemo and kill them. I had my injection yesterday and confident my little guys are working hard right now to do their thing!
As I mentioned, there are also a slew of natural drugs that were on the test that revealed some sensitivity to my cancer cells. We are using some of them here and will continue to do so when I return. I am currently getting artesunate injections which is a natural drug previously used for malaria. I’m on selenium and will be taking quercetin when I get home. There are many other natural drugs that I have some sensitivity to that I have been taking for the last year, so that is probably why I have had some success holding my disease at bay.
The conclusion is obvious and one Dr. Jacob told me before I got here. I need to be doing many things in combination to combat my disease. Doing chemo alone or natural medicine alone is not effective because it only works on a small percentage of the disease. Doing everything in combination is the only way.
If you can’t read the excitement in my voice it is there. Each day I believe more and more in what we are doing here. I am a very logical thinking man and all of this is very logical and makes complete sense. I told aunt Betty last night that I regret not finding this place a few years ago. If I didn’t have cancer, but was diagnosed today, this is the first place I would be. The less your cancer sees (from chemo,etc.), the better chance this treatment can work because the options should be nearly unlimited.
For now I remain hopeful and excited that I am once again on the right path. I appreciate all of your support…I’m really looking forward to getting home soon. Can’t wait to give my kids a hug and tell them with more confidence that “daddy is going to be ok.”
More updates to come…
Love,
Tony
The biggest news of the day today is that Crystal and I are celebrating our 10th Anniversary. What a way to spend it…thousands of miles apart. The day is a reminder of how important she is to me and how lucky I have been the past ten years to partner with such an extraordinary women. I would rather be home to celebrate with her, but I am here so we can continue celebrating this day for years to come.
My chemosensitivity test came back two days ago, but it has taken me a couple of days to understand the results in order to publish them. A simple blood test cultured by a geneticist is all they use to see what antibodys, natural medications and chemos your tumors are sensitive to (which is good) or insensitive to. I am appalled that the States does not use this test and find it near criminal in my mind. The test gives you so much information and helps pinpoint what medications work best for someone. This information would alleviate putting cancer patients through the pains and sickness of chemos that may not be sensitive to their tumors. I don’t understand why we don’t have it in the States—and after seeing the results I’m angered by what I and so many cancer patients go through because this is not a test in the US “cancer box.”
There are chemosensitivity tests in the States, but they take a biopsy of your tumor. This not only is invasive, but only gives you a small picture of what is going on. A tumor mass can have different properties in different areas, so getting a small slice of a tumor will only tell you the story for that particular piece. The test here in Germany comes from the blood and gets your “cancer story” from both active and non active cancer cells travelling through your body. Amazing---this test alone was worth the trip to Germany.
There was some good news on my test and some bad news, but I think overall the test was much more positive than the doctor anticipated. My perception is that she thought the results would be much worse. Bad news is only 30% of my tumors are sensitive (which is good) to chemotherapy. That means the other 70% we will need to tackle through antibodys and embryonic cells. We found that I was insensitive to all of the chemos I have been offered at home (not that I was not sensitive to them at one time, but my body has now become resistant to them). The decision to stop chemo several months ago was a great decision because it would not have helped. There were four chemos that I was sensitive to...three are in the colon cancer family of drugs and one is an old lymphoma drug. The three colon cancer drugs I have never heard of, but Dr. Jacob says they use them for colon cancer. The really good news is that Dr. Jacob guessed correctly on two of the chemos. She had Dr. Vogl use two of the chemos in his chemoembolism treatment last week in my lungs along with the antibody, Avastin. She is now even more confident that we have made progress in my lungs like we did in my liver.
We are not going to start chemo until I get home. She says she doesn’t want to throw too much at me at once---basically my body may not be able to handle all of it. I have found that timing is very important with her, so I will start when she wants me to start. The chemo at home will most likely be in pill form in much lower doses than before. She doesn’t believe my side effects will be bad, if at all…and the best news…we know my tumors will be sensitive to it. I don’t mind going through a little suffering if I know the drugs have the potential to work. Of course she will be supporting my body through natural medications at the same time because she absolutely does not want to compromise my immune system.
The other piece of the puzzle was the antibodys. She was very concerned that I would be resistant to antibodys, which would have made this a little more difficult. The best news of the test is that I have sensitivity to the antibody thalidomide. This is an old drug (1950-1960s??) that was used to help women with nausea when they were pregnant. They have sinced stopped the use of this drug because they soon found out that these pregnant women were having babies with deformities. I could write the history here, but I’ll spare everyone the details for now---the connection though is obvious with what we know now about embryonic cells. So…30-40% of my cancer cells will respond to antibodys, in particular thalidomide. This drug will go to the cancer in my body, “mark it”, which will cause inflammation in the body. My body’s immune system will recognize the inflammation as something that needs to be destroyed and will go kill it. So along with these antibodys, having my immune system working well is just as important. That is where the natural drugs, the vaccines and photopherosis I am doing come into play.
The last piece and probably the worst news on the test is that 35% of my cells are resistant to chemo or antibodys. There are no medications I can take that will kill these cells. Good news is we have the embryonic cells that can kill these cells. Again, I will spare you the details ( I think I put some in an earlier blog). These proteins are injected into your body and will again, “mark” the cancer cells resistant to antibodys and chemo and kill them. I had my injection yesterday and confident my little guys are working hard right now to do their thing!
As I mentioned, there are also a slew of natural drugs that were on the test that revealed some sensitivity to my cancer cells. We are using some of them here and will continue to do so when I return. I am currently getting artesunate injections which is a natural drug previously used for malaria. I’m on selenium and will be taking quercetin when I get home. There are many other natural drugs that I have some sensitivity to that I have been taking for the last year, so that is probably why I have had some success holding my disease at bay.
The conclusion is obvious and one Dr. Jacob told me before I got here. I need to be doing many things in combination to combat my disease. Doing chemo alone or natural medicine alone is not effective because it only works on a small percentage of the disease. Doing everything in combination is the only way.
If you can’t read the excitement in my voice it is there. Each day I believe more and more in what we are doing here. I am a very logical thinking man and all of this is very logical and makes complete sense. I told aunt Betty last night that I regret not finding this place a few years ago. If I didn’t have cancer, but was diagnosed today, this is the first place I would be. The less your cancer sees (from chemo,etc.), the better chance this treatment can work because the options should be nearly unlimited.
For now I remain hopeful and excited that I am once again on the right path. I appreciate all of your support…I’m really looking forward to getting home soon. Can’t wait to give my kids a hug and tell them with more confidence that “daddy is going to be ok.”
More updates to come…
Love,
Tony
Wednesday, October 15, 2008
On the right track…(Day 9 in Germany)
I slept great Monday night, one of the best nights of sleep since I have been here. I think because Crystal and I were always getting up every morning “alarmless” I was always afraid I would oversleep. I knew we didn’t have to get up Tuesday morning since we were not on a tight schedule--so we slept. Aunt Betty needed to catch up on her sleep and I needed some extra sleep as well.
Because we slept in we didn’t get to the Klinik until around 11:00am and didn’t leave until 3:30pm. I got my IVs as usual and spoke with Dr. Jacob. She was very pleased with how I was feeling, especially how my body tolerated Dr. Vogls treatment last week in Frankfurt. The plan in her mind has not changed. I will get the embryonic cells on Thursday, start my vaccinations next week and have a repeat trip to Dr. Vogl again next week before I go home. I knew my stay here could go past 3 weeks, but she doesn’t think at this point that I will need to stay longer. I will need to come back at some point, but we will figure out when and how long before I leave. Much of that decision will be based on how much I can do at home and how well things are going here.
Dr. Jacob had my follow up ultrasound today. We had our baseline ultrasound last week, but she wanted another one today to see what kind progress we have made. As we talked she seemed confident that I would see a reduction in my tumor sizes—narcosis and dead tissue. I wanted to believe her, but at the same time I’ve learned to be fairly guarded about these things. As much as I want good news and as positive as I remain, I also find myself skeptical at times, especially with results this quick. I use the word “guarded” quite a bit because I want the positive news, but have expected it before and have gotten not so good news.
We had the ultrasound and she was right. I haven’t had tears of joy for awhile, but the ultrasound brought them out. Dr. Jacob was very happy and saw measurable progress. She is going to give me some measurements tomorrow, but from what she saw it seems to be significant progress. I could see the tumors clearly last Monday as soon as she started the ultrasound; today we had a little more trouble spotting them. Not that they are that small, but I think was fairly surprised last week in the size of them on the ultrasound.
Of course I am thrilled to finally get a taste of good news, especially after one week of treatment. I know an ultrasound is not as precise and accurate as a CT or MRI, but there seems to be enough evidence of good news to be happy. We won’t know how the lungs are doing until next week, but Dr. Jacob also seemed confident that we should be having a positive effect there as well. I immediately called Crystal and made her cry. Even though she’s not here, it was great to finally share some news we have been longing to hear for awhile.
In a previous entry I talked about being asked a question about how sure I was about this place. Everyone here is really sold on what is going on and I apparently seemed to exude the perception that I was on the fence. When you begin seeing positive results it becomes very difficult to not believe more and more the things that are going on here. I obviously remain guarded (there’s that word again)—we have a long way to go, but seems for now that we are on the right track. Today was a good day.
More updates to come.
Love,
Tony
Because we slept in we didn’t get to the Klinik until around 11:00am and didn’t leave until 3:30pm. I got my IVs as usual and spoke with Dr. Jacob. She was very pleased with how I was feeling, especially how my body tolerated Dr. Vogls treatment last week in Frankfurt. The plan in her mind has not changed. I will get the embryonic cells on Thursday, start my vaccinations next week and have a repeat trip to Dr. Vogl again next week before I go home. I knew my stay here could go past 3 weeks, but she doesn’t think at this point that I will need to stay longer. I will need to come back at some point, but we will figure out when and how long before I leave. Much of that decision will be based on how much I can do at home and how well things are going here.
Dr. Jacob had my follow up ultrasound today. We had our baseline ultrasound last week, but she wanted another one today to see what kind progress we have made. As we talked she seemed confident that I would see a reduction in my tumor sizes—narcosis and dead tissue. I wanted to believe her, but at the same time I’ve learned to be fairly guarded about these things. As much as I want good news and as positive as I remain, I also find myself skeptical at times, especially with results this quick. I use the word “guarded” quite a bit because I want the positive news, but have expected it before and have gotten not so good news.
We had the ultrasound and she was right. I haven’t had tears of joy for awhile, but the ultrasound brought them out. Dr. Jacob was very happy and saw measurable progress. She is going to give me some measurements tomorrow, but from what she saw it seems to be significant progress. I could see the tumors clearly last Monday as soon as she started the ultrasound; today we had a little more trouble spotting them. Not that they are that small, but I think was fairly surprised last week in the size of them on the ultrasound.
Of course I am thrilled to finally get a taste of good news, especially after one week of treatment. I know an ultrasound is not as precise and accurate as a CT or MRI, but there seems to be enough evidence of good news to be happy. We won’t know how the lungs are doing until next week, but Dr. Jacob also seemed confident that we should be having a positive effect there as well. I immediately called Crystal and made her cry. Even though she’s not here, it was great to finally share some news we have been longing to hear for awhile.
In a previous entry I talked about being asked a question about how sure I was about this place. Everyone here is really sold on what is going on and I apparently seemed to exude the perception that I was on the fence. When you begin seeing positive results it becomes very difficult to not believe more and more the things that are going on here. I obviously remain guarded (there’s that word again)—we have a long way to go, but seems for now that we are on the right track. Today was a good day.
More updates to come.
Love,
Tony
Tuesday, October 14, 2008
A sad day, but a new week (Day 8 in Germany)
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
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
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
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