Our trip from the airport to our house took longer than our trip from Atlanta to Indianapolis due to the snow. Wasn't the welcome home party Crystal and I were hoping for, but we were happy that we made it home before the storm really hit. We could have been stuck in an airport somewhere trying to get home so I don't want to complain.
I've been non-stop since our return home. Although Dr. Jacob gave me strict instructions to rest, I haven't had much time to do so. We are going to bed around 9 o'clock every night and I'm doing four to five hours of IVs every day, so I guess I consider that "rest". I'm really busy catching up at work and at home so even though I'm "resting" it doesn't always feel that way. Good news is I've been feeling fairly good overall. I can feel when I'm getting tired so I take the necessary breaks and have been very careful not to over exert myself.
Blood tests came back yesterday and I'm actually a little surprised from the results. All my levels are normal, including liver enzymes, white / red blood cells, etc. Honestly that is hard for me to believe based on what I have been through, but I'm not complaining. I guess that is the reason I have been feeling pretty good. The news of my blood test gives me a little pep in my step. My body is doing a great job tolerating these treatments and I can't help but think that will correlate to better overall results. I've done everything Dr. Jacob has asked me to do since I've returned and I know that has made a difference as well. Special thanks to our angel next door, Carol Haney, for coming over late Tuesday night when we returned from Germany to help me access my port so I didn't miss any of my treatments.
Dr. Jacob sent me the results of all my other tests yesterday. I'm not great at deciphering the German, but from what I can read and understand the results look very positive. There were some new tests she ran which will need some explanation before I publish the results. We are trying to find a time we can talk early this week to go over the results and talk about what I should be doing next. I'm anxious to speak with her to get her opinion on the results. I have this funny feeling she is going to have something else up her sleeve on some things I should be doing next. Once I speak with her I'll publish the results.
I want to thank everyone for the well wishes while we were gone and since we have returned. I have not made many phone calls or returned e-mails since I've been home, but please know I appreciate all of the support. I continue to know that I don't walk alone on this journey which is a big reason for my success. I am very aware that I still have work to do, but I haven't felt this good about the status of my disease in a long time. I've come a long way in three months.
More updates to come...
Love,
Tony
Saturday, January 31, 2009
Monday, January 26, 2009
Coming home...
Steroids help the recovery process after my chemoembolization treatment with Dr. Vogl. While the steroids help my body cope with the side effects they also put me in a very hormonal state after the procedure. I feel like a pregnant teen age boy going through puberty during a menstrual cycle on the brink of menopause. I have to lay flat in a bed for four hours doing nothing but letting my mind wander. One moment I'm joking around with the nurses, the next I've got tears running down my cheeks or I want to throw something across the room and then I circle back through depression, worry and happiness. Thank goodness I'm not bed ridden for more than four hours. I make this point because I realize when I update this journal I can be emotional and I need to be careful at this time based on my steroid use.
We said our goodbyes to Dr. Jacob and the staff this morning and made our way back to Frankfurt. I really wasn't looking forward to the procedure this morning because I was really feeling like I was getting some energy and feeling better. I knew I would more than likely take a couple steps back after today, but I also know I come here for a reason, so not having the procedure didn't even cross my mind. Feeling good is a daily goal to get me to my ultimate cancer free goal and I realize I have to make continued sacrifices to make that happen. What is another week or two when looking at the overall picture?
The procedure went ok. The incision spot Dr. Vogl used last Monday was used again today, so I'll use the word tender to describe how I felt as he performed his magic. He took a little longer today and found out later when we met with him that he was a little more aggressive today in what he did which required a little more time. I'm not going to complain, I want aggressive, but it came as somewhat of a surprise from what we expected. Crystal and I left his office wondering why we weren't more "aggressive" last Monday, but we'll talk to Dr. Jacob more about that this week. I believe it is because they weren't exactly sure when I arrived last Monday the status of my lesions. We knew going into today exactly what we were dealing with. When we spoke to Dr. Vogl before we left he showed us pictures of my lungs and felt like we had made progress this week with those lesions and was very satisfied with the progress in my liver. All of this is very good news and was a great way to end the trip. We will have a follow-up call with Dr. Jacob later this week or early next week so she can check in on my status and finalize my plan after all of the tests she sent out come back.
We arrived at the hospital today and sat next to a man from England that turned to me and asked if I was on a plane coming in from London. I thought maybe something strange had happened to that plane, but he was asking because he was on that plane and thought he recognized me. I explained to him I was from the States and come here for the doctors. Long story short, he was a patient of Dr. Jacobs too, coming from England to see Dr. Vogl. Colon cancer diagnosis with liver metastasis. His son had non-Hodgkin’s lymphoma incurable by the US (MD Anderson) and England, came to Germany and was cancer free after four months. This was not a chance encounter. He spoke to me of the "risk" that he and his son took to put aside what two country's physicians told him which ultimately led him to Germany. They were not willing to go home and die or kill themselves trying the "traditional" way. They carry faith in themselves and not just say they will do anything, but will actually do anything to help themselves find the road that leads to their ultimate healing. Like I said, to me this wasn't a chance meeting, and having that little pep talk from him to myself was comforting before I went in for my treatment.
Tonight is an emotional night... 1) We made it through round two in Germany and have had some positive news. 2) I realize I'm doing everything I can possibly do to heal myself without regrets. 3) I'm blessed to have people surrounding me to allow this to happen. 4) I'm blessed with a wonderfully supportive wife who has been by my side through all of this. We are so thankful that we have been able to travel to Europe three times together in the last seven months. The circumstances aren't optimal, but our relationship continues to bloom from it and our experiences will live with us forever. 5) Of course the steroids make a difference with my emotions too.
Tonight though, emotions aside, I'm a pretty lucky guy. Thanks again to all of you to continue to be a part of my journey. Can't wait to get home to Indiana--even if we do land to six inches of snow.
More updates to come...
Love,
Tony
We said our goodbyes to Dr. Jacob and the staff this morning and made our way back to Frankfurt. I really wasn't looking forward to the procedure this morning because I was really feeling like I was getting some energy and feeling better. I knew I would more than likely take a couple steps back after today, but I also know I come here for a reason, so not having the procedure didn't even cross my mind. Feeling good is a daily goal to get me to my ultimate cancer free goal and I realize I have to make continued sacrifices to make that happen. What is another week or two when looking at the overall picture?
The procedure went ok. The incision spot Dr. Vogl used last Monday was used again today, so I'll use the word tender to describe how I felt as he performed his magic. He took a little longer today and found out later when we met with him that he was a little more aggressive today in what he did which required a little more time. I'm not going to complain, I want aggressive, but it came as somewhat of a surprise from what we expected. Crystal and I left his office wondering why we weren't more "aggressive" last Monday, but we'll talk to Dr. Jacob more about that this week. I believe it is because they weren't exactly sure when I arrived last Monday the status of my lesions. We knew going into today exactly what we were dealing with. When we spoke to Dr. Vogl before we left he showed us pictures of my lungs and felt like we had made progress this week with those lesions and was very satisfied with the progress in my liver. All of this is very good news and was a great way to end the trip. We will have a follow-up call with Dr. Jacob later this week or early next week so she can check in on my status and finalize my plan after all of the tests she sent out come back.
We arrived at the hospital today and sat next to a man from England that turned to me and asked if I was on a plane coming in from London. I thought maybe something strange had happened to that plane, but he was asking because he was on that plane and thought he recognized me. I explained to him I was from the States and come here for the doctors. Long story short, he was a patient of Dr. Jacobs too, coming from England to see Dr. Vogl. Colon cancer diagnosis with liver metastasis. His son had non-Hodgkin’s lymphoma incurable by the US (MD Anderson) and England, came to Germany and was cancer free after four months. This was not a chance encounter. He spoke to me of the "risk" that he and his son took to put aside what two country's physicians told him which ultimately led him to Germany. They were not willing to go home and die or kill themselves trying the "traditional" way. They carry faith in themselves and not just say they will do anything, but will actually do anything to help themselves find the road that leads to their ultimate healing. Like I said, to me this wasn't a chance meeting, and having that little pep talk from him to myself was comforting before I went in for my treatment.
Tonight is an emotional night... 1) We made it through round two in Germany and have had some positive news. 2) I realize I'm doing everything I can possibly do to heal myself without regrets. 3) I'm blessed to have people surrounding me to allow this to happen. 4) I'm blessed with a wonderfully supportive wife who has been by my side through all of this. We are so thankful that we have been able to travel to Europe three times together in the last seven months. The circumstances aren't optimal, but our relationship continues to bloom from it and our experiences will live with us forever. 5) Of course the steroids make a difference with my emotions too.
Tonight though, emotions aside, I'm a pretty lucky guy. Thanks again to all of you to continue to be a part of my journey. Can't wait to get home to Indiana--even if we do land to six inches of snow.
More updates to come...
Love,
Tony
Sunday, January 25, 2009
Germany trip two coming to an end...
Last full day at the Klinic today and we’re trying to get everything in order. Because we are going home after my second chemoembolism treatment Monday, we are bringing back quite a bit more medication to get the supportive IVs at home that I typically receive in Germany. Dr. Jacob has made it very clear to me that I need to be extra careful next week and prepare for the worst. Obviously I’m hoping for the best, but I know these treatments are hard on the body and getting the rest and medications I need next week will be extremely important.
Yesterday was a fairly typically day other than another man dropping his pants in front of Crystal. She is officially two for two on her trips to Germany seeing another mans pants fall below his ankles. This time it was an older man walking down the hallway of the Klinic. As we were sitting in the library watching him walk by, his pants decided to give on him leaving the three of us stunned. I’m not sure what was funnier, the actual event of his pants coming down or seeing the man kind of shrug his shoulders and continue walking by with his pants around his ankles. We had a good laugh and hope that the elderly man finds himself a nice belt sometime soon. The rest of the day went as planned…came to the Klinic to receive my IVs, went to lunch with Dr. Jacob and some of the other employees at the Klinic, spent some time catching up on e-mails, ordered some take away pizza and went back to the apartment to watch some movies. Not much different than being at home.
We had an extended conversation with Dr. Jacob yesterday during our daily “review” with her. She was telling me about a conference she went to on Friday in Munich about an antibody the Germans have been testing for the past twenty years. The German equivalent to our FDA approved this antibody recently and Dr. Jacob thinks it will be in the market in Germany June or July. She said she sat in the conference and thought about my case while listening to them talk. She explained to me why she was so excited about this antibody. One, my body has never seen it. One of my biggest problems is that my body has become resistant to so many things that I’m limited to the full buffet of treatment. Two, this antibody works in many ways fighting different types of cells. Many of the medications I take now are “monoeffective”, so we have to combine several things to get the effects we want. Lastly, this would be given in low doses based on its potency, so hopefully the side effects would be minimal.
This antibody has been tested systemically, but Dr. Jacob wants to try local treatment into my liver via Dr. Vogl. She thinks she can get the drug before it is actually released so when I come back in late April / early May I could try it. Obviously I’m excited about the news and what it could do for me, but at the same time I must admit it’s a little scary thinking I could be one of the first patients using this antibody locally. Crystal jokingly asked if the US might have this antibody ready for patients in ten years and Dr. Jacob jokingly said maybe longer. I try to think logically and Dr. Jacob used the word logical many times when talking about this with me. She said it makes so much sense with what I have and is the most logical thing to do. I like that.
As exciting as the news was, the conversation was still bittersweet. We continue to make progress, but she also made it very clear I’m battling a very aggressive cancer and we have lots of work to do. We had another ultrasound today to see if I’ve had decreased inflammation in my liver and to check to see how the first chemoembolism treatment effected my lesions. Progress is the continued theme…there was still some inflammation, but overall there is quite a bit of dead tissue and necrosis, so we know what we are doing is working.
Tomorrow we head back to Frankfurt to see Dr. Vogl. One last treatment before we head home. I continue to be really tired, but I’m still not sure if the tiredness comes from the treatments or the six hour time difference that I have not become accustomed to yet. I guessing a little bit of both. We land Tuesday night and both Crystal and I are looking forward to coming home and getting those kids in our arms. Won’t be long….we appreciate the help we have received from so many people while we were gone, especially Crystal’s mom, Donna, who stayed with them through the week. None of this could happen without the help we have received.
More updates to come…
Love,
Tony
Yesterday was a fairly typically day other than another man dropping his pants in front of Crystal. She is officially two for two on her trips to Germany seeing another mans pants fall below his ankles. This time it was an older man walking down the hallway of the Klinic. As we were sitting in the library watching him walk by, his pants decided to give on him leaving the three of us stunned. I’m not sure what was funnier, the actual event of his pants coming down or seeing the man kind of shrug his shoulders and continue walking by with his pants around his ankles. We had a good laugh and hope that the elderly man finds himself a nice belt sometime soon. The rest of the day went as planned…came to the Klinic to receive my IVs, went to lunch with Dr. Jacob and some of the other employees at the Klinic, spent some time catching up on e-mails, ordered some take away pizza and went back to the apartment to watch some movies. Not much different than being at home.
We had an extended conversation with Dr. Jacob yesterday during our daily “review” with her. She was telling me about a conference she went to on Friday in Munich about an antibody the Germans have been testing for the past twenty years. The German equivalent to our FDA approved this antibody recently and Dr. Jacob thinks it will be in the market in Germany June or July. She said she sat in the conference and thought about my case while listening to them talk. She explained to me why she was so excited about this antibody. One, my body has never seen it. One of my biggest problems is that my body has become resistant to so many things that I’m limited to the full buffet of treatment. Two, this antibody works in many ways fighting different types of cells. Many of the medications I take now are “monoeffective”, so we have to combine several things to get the effects we want. Lastly, this would be given in low doses based on its potency, so hopefully the side effects would be minimal.
This antibody has been tested systemically, but Dr. Jacob wants to try local treatment into my liver via Dr. Vogl. She thinks she can get the drug before it is actually released so when I come back in late April / early May I could try it. Obviously I’m excited about the news and what it could do for me, but at the same time I must admit it’s a little scary thinking I could be one of the first patients using this antibody locally. Crystal jokingly asked if the US might have this antibody ready for patients in ten years and Dr. Jacob jokingly said maybe longer. I try to think logically and Dr. Jacob used the word logical many times when talking about this with me. She said it makes so much sense with what I have and is the most logical thing to do. I like that.
As exciting as the news was, the conversation was still bittersweet. We continue to make progress, but she also made it very clear I’m battling a very aggressive cancer and we have lots of work to do. We had another ultrasound today to see if I’ve had decreased inflammation in my liver and to check to see how the first chemoembolism treatment effected my lesions. Progress is the continued theme…there was still some inflammation, but overall there is quite a bit of dead tissue and necrosis, so we know what we are doing is working.
Tomorrow we head back to Frankfurt to see Dr. Vogl. One last treatment before we head home. I continue to be really tired, but I’m still not sure if the tiredness comes from the treatments or the six hour time difference that I have not become accustomed to yet. I guessing a little bit of both. We land Tuesday night and both Crystal and I are looking forward to coming home and getting those kids in our arms. Won’t be long….we appreciate the help we have received from so many people while we were gone, especially Crystal’s mom, Donna, who stayed with them through the week. None of this could happen without the help we have received.
More updates to come…
Love,
Tony
Friday, January 23, 2009
The start of our new plan...
After two full days in the Klinic I feel like we are finally getting some answers and formulating our next plan. Every time my cancer makes a move I’m eager to “counter attack” and I think we are close to knowing our next move.
Overall today was a really positive day. The day started with the results of my blood tests which are remarkable based on what my body has been through. These results, once more, helped solidify that my liver function is really getting better. For the most part, my liver enzymes are normal except for one level which is high based on the chemoembolism treatment. When I was here in October my counts were much higher after the chemoembolism treatments, so we know my liver is not only tolerating treatment better, but functioning better as well. Both my red and white blood cell counts are within the normal range as well which is very positive. I could go into detail about each marker, but overall my blood is telling me that my body is functioning like it should.
After we reviewed the blood tests and finished my IVs for the day we had an ultrasound to look at my liver. This was icing on the cake as far as showing improvement in my liver. Crystal and I have a hard time deciphering everything Dr. Jacob points out, but her conclusion was definitive that my liver is better. She was able to show us the “dead” tissue and more necrosis occurring in the liver that would not only show up as growth on a PET scan, but also “light up” as more active cells. Again, all of this is difficult to explain in a short journal, but after three ultrasounds of my liver it’s even obvious to me the improvement.
We’re making progress which is great, but it’s evident that there is still disease in my liver that needs to be addressed. Good news is there doesn’t seem to be spots that don’t have either dead tissue around them or necrosis inside of them. The size of my liver is smaller which is very positive and I have no pain. There were some areas in my liver that were inflamed due to the treatment I had Monday, so we are going to wait another couple of days and do another ultrasound to see if we can get a clearer picture of those areas as well. She took an ultrasound of my spleen and kidneys looking for unwanted fluid and found none, so I continue to thank my body for really performing and tolerating these amazing treatments.
Later in the day we had our meeting with Dr. Friedriekson who is another counseling oncologist who brings additional ideas to the table. We talked about the last several days to bring him up to speed on what is going on and I of course had plenty of questions for him. The not so good news is that both Dr. Jacob and Dr. Friedriekson do not understand why I had progression in my lungs. They both agree these were dormant cancer cells that over the last few months decided to become active and grow. The problem is that these cells somehow avoided the treatments we were doing. Dr. Friedriekson had some great ideas to help counteract as well as some possible explanation on why these progressive tumors “passed through the cracks.”
So the plan as of now is to return to Frankfurt on Monday and have another treatment with Dr. Vogl. I’m going to be bringing home quite of bit of medication to help my body recover like I do here. I’ll be a little nervous leaving because I know the second treatment last time was more difficult than the first. Now I’ll be doing a second treatment and jumping on a plane to come home. I know Dr. Jacob has confidence in me and is happy with how I am doing or she wouldn’t send me home. We’ve added several medications and injections to help boost my immune system that I will be taking the remainder of the week and when I return. We did another chemosensitivity test Tuesday and won’t get the results until I’m gone next week so the systemic chemo will be the “missing piece” of my plan until I get home. Dr. Jacob thinks we need to change to another chemo, but wanted the chemosensitivity test results to be sure. I’ll let everything play itself out and we’ll return back “home” late April / early May.
In light of Germany giving us good news today I took Crystal out to an authentic Bavarian Brewhouse. Of course I didn’t drink, but Crystal had a beer and we ate authentic German food and enjoyed the atmosphere of those around us. Overall I’m feeling ok. The mornings seem to be the worst. Once I get up and get my IVs I seem to start feeling better. We’ll see how the rest of the week plays out…each day seems to be a little different.
More updates to come…
Love,
Tony
Overall today was a really positive day. The day started with the results of my blood tests which are remarkable based on what my body has been through. These results, once more, helped solidify that my liver function is really getting better. For the most part, my liver enzymes are normal except for one level which is high based on the chemoembolism treatment. When I was here in October my counts were much higher after the chemoembolism treatments, so we know my liver is not only tolerating treatment better, but functioning better as well. Both my red and white blood cell counts are within the normal range as well which is very positive. I could go into detail about each marker, but overall my blood is telling me that my body is functioning like it should.
After we reviewed the blood tests and finished my IVs for the day we had an ultrasound to look at my liver. This was icing on the cake as far as showing improvement in my liver. Crystal and I have a hard time deciphering everything Dr. Jacob points out, but her conclusion was definitive that my liver is better. She was able to show us the “dead” tissue and more necrosis occurring in the liver that would not only show up as growth on a PET scan, but also “light up” as more active cells. Again, all of this is difficult to explain in a short journal, but after three ultrasounds of my liver it’s even obvious to me the improvement.
We’re making progress which is great, but it’s evident that there is still disease in my liver that needs to be addressed. Good news is there doesn’t seem to be spots that don’t have either dead tissue around them or necrosis inside of them. The size of my liver is smaller which is very positive and I have no pain. There were some areas in my liver that were inflamed due to the treatment I had Monday, so we are going to wait another couple of days and do another ultrasound to see if we can get a clearer picture of those areas as well. She took an ultrasound of my spleen and kidneys looking for unwanted fluid and found none, so I continue to thank my body for really performing and tolerating these amazing treatments.
Later in the day we had our meeting with Dr. Friedriekson who is another counseling oncologist who brings additional ideas to the table. We talked about the last several days to bring him up to speed on what is going on and I of course had plenty of questions for him. The not so good news is that both Dr. Jacob and Dr. Friedriekson do not understand why I had progression in my lungs. They both agree these were dormant cancer cells that over the last few months decided to become active and grow. The problem is that these cells somehow avoided the treatments we were doing. Dr. Friedriekson had some great ideas to help counteract as well as some possible explanation on why these progressive tumors “passed through the cracks.”
So the plan as of now is to return to Frankfurt on Monday and have another treatment with Dr. Vogl. I’m going to be bringing home quite of bit of medication to help my body recover like I do here. I’ll be a little nervous leaving because I know the second treatment last time was more difficult than the first. Now I’ll be doing a second treatment and jumping on a plane to come home. I know Dr. Jacob has confidence in me and is happy with how I am doing or she wouldn’t send me home. We’ve added several medications and injections to help boost my immune system that I will be taking the remainder of the week and when I return. We did another chemosensitivity test Tuesday and won’t get the results until I’m gone next week so the systemic chemo will be the “missing piece” of my plan until I get home. Dr. Jacob thinks we need to change to another chemo, but wanted the chemosensitivity test results to be sure. I’ll let everything play itself out and we’ll return back “home” late April / early May.
In light of Germany giving us good news today I took Crystal out to an authentic Bavarian Brewhouse. Of course I didn’t drink, but Crystal had a beer and we ate authentic German food and enjoyed the atmosphere of those around us. Overall I’m feeling ok. The mornings seem to be the worst. Once I get up and get my IVs I seem to start feeling better. We’ll see how the rest of the week plays out…each day seems to be a little different.
More updates to come…
Love,
Tony
Wednesday, January 21, 2009
Getting some answers...
As tired as we were when we went to bed Monday night in Frankfurt, neither Crystal nor I slept all that great. We went to bed at 7:30 pm (1:30 pm EST) thinking we would sleep through the night but I found myself up out of bed by 11:30pm doing some work on the computer. Crystal soon followed and we split our long night of sleep into two short shifts.
We travelled to the Klinic from Frankfurt on Tuesday morning. Our trip was slowed by our rental car exchange in Munich and the snow. Once we got into Munich the snow started and it got worse as we travelled south to the Klinic. The bad news was we were given a car that didn’t have snow tires. The rental car attendant warned me and I really didn’t think we would have a problem until the snow kept coming. We only got stuck once in a parking lot when leaving the Klinic and needed some help getting out, but they do a very good job of plowing the main roads and sidewalks so once on the main roads we were fine. We didn’t have time to check the extended forecast, but hoping the snow subsides the remainder of the week. If not, we’ll probably need to change cars again.
It was nice to be “home” again in the Klinic. We had an extended conversation about my scan results with Dr. Jacob and she seems a little more optimistic about the results. She wanted to follow up with Dr. Vogl based on the conversation we had with him and she also wanted to send the scan to her radiologist to double check his thoughts. She is convinced that the results are not as bad as the US has indicated, but wants to be sure on the progression, if any. She, like me, believes that if I am having progression indicated by the results I would be incurring other problems as well. She thinks I would be having pain, severe fatigue, losing weight, loss of color, and bad blood tests. We talked about the issues I had after coming home with Germany and she doesn’t believe any of those issues were cancer related.
Quick update this morning:
Dr. Jacob did speak to Dr. Vogl last night and we are now 99% certain that the disease in my liver is stable or better. My blood tests came back today and all of my liver enzymes are better than they were three months ago and that is after the Dr. Vogl procedure which typically raises those levels. The actual pictures and my liver functions make Dr. Jacob much more certain that my liver is functioning much better than it was three months ago…which is progress. She still sent the PET scan to another radiologist for one more opinion, but unless he sees something significantly different I don’t think we’re going to get different news.
The disappointing news is there are two new spots in my lungs. We’re going to look at them tomorrow, but she knows for certain they are new. This makes her want to change some of my systemic treatment that we are doing as well as go back to Dr. Vogl next Monday for one more chemoembolism treatment focusing on my lungs. We took blood again today for another chemosensitivity test to see if anything has changed (which is possible) and to make sure we choose the correct systemic treatment for my lungs. This test will also give me a tumor marker which will be another important number to tell if my disease is better, worse, or stable.
All in all I think the news is positive. Obviously I’m a little disappointed about my lungs and want to make sure we attack those lesions, but keeping the liver in check right now is my biggest concern and I feel like we are doing that. We’re going to do an ultrasound tomorrow which will allow us to see the liver up close and personal. I’m really happy to be back and be surrounded by continued hope and optimism. As of now looks like we are still on schedule to come home on Tuesday…I don’t anticipate that changing unless something major occurs.
Overall I’m feeling pretty good. The steroids won’t wear off for another day or two from the procedure so I’ll have a couple days before I typically need a little more IV attention, but at the same time if my liver is functioning better than maybe I won’t need that extra boost. We’ll see what happens, it’s just good to be here and feel safe again.
More updates to come…
Love,
Tony
We travelled to the Klinic from Frankfurt on Tuesday morning. Our trip was slowed by our rental car exchange in Munich and the snow. Once we got into Munich the snow started and it got worse as we travelled south to the Klinic. The bad news was we were given a car that didn’t have snow tires. The rental car attendant warned me and I really didn’t think we would have a problem until the snow kept coming. We only got stuck once in a parking lot when leaving the Klinic and needed some help getting out, but they do a very good job of plowing the main roads and sidewalks so once on the main roads we were fine. We didn’t have time to check the extended forecast, but hoping the snow subsides the remainder of the week. If not, we’ll probably need to change cars again.
It was nice to be “home” again in the Klinic. We had an extended conversation about my scan results with Dr. Jacob and she seems a little more optimistic about the results. She wanted to follow up with Dr. Vogl based on the conversation we had with him and she also wanted to send the scan to her radiologist to double check his thoughts. She is convinced that the results are not as bad as the US has indicated, but wants to be sure on the progression, if any. She, like me, believes that if I am having progression indicated by the results I would be incurring other problems as well. She thinks I would be having pain, severe fatigue, losing weight, loss of color, and bad blood tests. We talked about the issues I had after coming home with Germany and she doesn’t believe any of those issues were cancer related.
Quick update this morning:
Dr. Jacob did speak to Dr. Vogl last night and we are now 99% certain that the disease in my liver is stable or better. My blood tests came back today and all of my liver enzymes are better than they were three months ago and that is after the Dr. Vogl procedure which typically raises those levels. The actual pictures and my liver functions make Dr. Jacob much more certain that my liver is functioning much better than it was three months ago…which is progress. She still sent the PET scan to another radiologist for one more opinion, but unless he sees something significantly different I don’t think we’re going to get different news.
The disappointing news is there are two new spots in my lungs. We’re going to look at them tomorrow, but she knows for certain they are new. This makes her want to change some of my systemic treatment that we are doing as well as go back to Dr. Vogl next Monday for one more chemoembolism treatment focusing on my lungs. We took blood again today for another chemosensitivity test to see if anything has changed (which is possible) and to make sure we choose the correct systemic treatment for my lungs. This test will also give me a tumor marker which will be another important number to tell if my disease is better, worse, or stable.
All in all I think the news is positive. Obviously I’m a little disappointed about my lungs and want to make sure we attack those lesions, but keeping the liver in check right now is my biggest concern and I feel like we are doing that. We’re going to do an ultrasound tomorrow which will allow us to see the liver up close and personal. I’m really happy to be back and be surrounded by continued hope and optimism. As of now looks like we are still on schedule to come home on Tuesday…I don’t anticipate that changing unless something major occurs.
Overall I’m feeling pretty good. The steroids won’t wear off for another day or two from the procedure so I’ll have a couple days before I typically need a little more IV attention, but at the same time if my liver is functioning better than maybe I won’t need that extra boost. We’ll see what happens, it’s just good to be here and feel safe again.
More updates to come…
Love,
Tony
Tuesday, January 20, 2009
Annoyances (warning: this ones a long one)...
In the weeks before we left for Germany there seemed to be several “little things” that happened to Crystal and I. Some call them Murphy’s law, I’m sticking to calling them our little annoyances. These things have mainly pertained to billing issues from doctor’s offices, airlines, utility bills, and even some self-imposed issues from things that just happen. Not end of the world type stuff, and most of them have been or seem fixable without “penalty”, but they have been really annoying issues that have to be addressed in the midst of our busy lives and bigger issues. I can’t say I don’t get frustrated, but at the same time I have been trying to keep things in perspective and I realize for every annoyance we have to follow up on there are many other day to day activities that occur seamlessly.
These annoyances are all good lessons in the forgiveness process and I bring them up because the start of our trip to Germany became borderline comical with the small issues we seemed to face. As usual, we were running around slightly frantic while getting ready Sunday morning. We left the house on time, but also left with that feeling of “it’s a matter of time before we realize what we forgot feeling” because we had to rush. So we were both a little frazzled from rushing around as we pulled out of our driveway. I told Crystal in the car that as long as we had our passports, toothbrushes, and the PET scan we could make due all week. If you know Crystal, the probability of her forgetting something is slim, but we’ve all been there and it further sets up my lead in to these annoyances and how we were feeling at the time.
Crystal’s brother, Steve, was taking us to the airport. To save time we were dropping our kids over at his house to play with his kids and taking our van to the airport. First self-imposed annoyance was our first stop. I had to make some copies of some medical reports to take with me and download some information from our school computer onto a memory stick. We got to the school which is only a few miles away and realized we didn’t have a key to get into the building. Time was ticking, but had no choice but to do what we needed to do. Luckily Crystal’s mom, Donna, was still at our house wrapping up some loose ends when she came over to see us off. We called and she rushed over to let us in the building. Problem one averted.
Once at Steve’s, we said our goodbyes to the kids and off we were. The kids did great as we left and we both know they will be fine this week. As we got onto the highway we soon remembered that the van’s windshield wiper fluid was not working. I noticed this Saturday night as we were leaving to go out as a family to see friends and refilled the tank, but didn’t have time to check the pump or play mechanic when we first noticed it. Usually no big deal but the roads were perfect for the day where you needed wiper fluid. Cars were spitting enough muck on your windshield to make it hard to see, but not wet enough to use your wipers without making things worse. Soon Crystal was driving down I-70 and all I could think about was that ridiculous Jim Carey movie Pet Detective where he rides down the highway with his head out the window. Crystal did her best to find those tiny pinholes of vision and Steve and I turned MacGuyver on the situation. Good news was I grabbed a bottle of water from our garage so Steve thought he may be able to reach out the window and wet the windshield, bad news was the bottle was frozen from the cold weather. Now we’re driving down the highway with the heat on high trying to melt the ice to help clean the windshield. You get the picture. Long story short we made it to the airport without pulling over or getting any water out of the bottle, but not without some laughter. We passed through problem two (hopefully Steve had a better return trip home…he had more time to pull over so I’m sure it was better).
We walk into an empty airport, got our boarding passes and begin to check our bags. We bought a new piece of luggage for Christmas because our big bag was getting a little worn. I bought a big piece because the airlines are getting so stingy with charging for extra luggage. Eventhough we both get two free checked bags for an international flight, Crystal and I were so proud of ourselves for getting everything into two suitcases (admittedly they were both 99% full), but I thought the less luggage we would have to haul through airports, rental car facilities, hotels, etc. would be better. As the check-in attendant took our bags she soon informed us that one of our bags was nine pounds overweight. We would have to dump some stuff, somehow carry it on, or rearrange how we packed. Steve was gone, we had no extra bag and the one carryon we had was relatively full. We opted to rearrange the suitcases and show the world our underwear. As I looked back, the kiosk that was a ghost town moments ago had now turned into a thriving metropolis. The one open lane Crystal and I started now had four people behind us and more on the way. We made it work by rearranging our luggage in front of a crowd that seemed like thousands and most importantly made it through annoyance number three.
I was looking forward to not getting the full body search at security since this was my first time flying without my internal pump. With the pump I always had to get stopped and do the whole pat down thing during the security check. I smiled as I didn’t beep through the security door and smiled even bigger when the pulled me aside for more checks. It wasn’t a full blown body search as usual with the rubber gloves, but it was an extra step and by now, after annoyance four, I realized this was going to be a day where perspective would be important. Small issue on the flight to Atlanta that lead to number five. Crystal and I had a two hour lay over in Atlanta so the twenty minute wait the pilot relayed to us on the Indianapolis runway wasn’t terrible, but was enough to include in this entry.
We get to Atlanta and had enough time to sit down and have a quick snack since we both knew the two squares we were going to receive going to Germany weren’t exactly five star quality (not complaining, just making a point). There was a little Mexican restaurant right next to our gate so sat down and make the decision to split a super nacho versus a chicken quesadilla. Someone should have tapped us on the shoulder and asked us what in the hell we were thinking to consider Mexican right before a nine hour flight. That same person should have beaten us over the head when we went with the super nachos with chili over the rather plain chicken quesadilla. We laughed about it when the food arrived as we watched our neighbors eat a baked potato with broccoli, but down the hatchet the chips went. I included this piece in my annoyance because when I think of super nachos we thought we would get lettuce, tomatoes, peppers, beans, etc. This one came with chili (we were smart enough to ask for the chili on the side), cheese and salsa. Not so super.
On the plane to Germany Crystal and I were hoping we would have an extra seat next to us the plane so we could spread out a little. Annoyance number seven came into play when somehow our two window seats were switched to two inside row seats when we checked in so we had to play the seating lottery and hope the seat next to us was empty. Of course it wasn’t and there were just enough empty seats where most everyone could sit comfortably around us except for us. Annoyance number eight came when we were up in the air, I started a movie, and my head set didn’t work. Luckily, this annoyance worked out to our benefit since we asked the man sitting next to Crystal to move back a row where there were two empty seats so Crystal and I could use the two workable headsets in the row. The comedy of errors continued but it seemed to be turning our way.
Then I fell finally fell asleep and woke up forty five minutes into my deep sleep to the crying of two babies. Not only were our window seats changed but we were sitting strategically between to sets of babies…one about six rows in front of us and one about six rows behind us. After a nice movie and mediocre meal I settled into my nap and woke up to the sound of two babies having a competition on who could cry the loudest. The winner was by far the one behind me, but annoyance number nine really had no winners. I always feel badly for the parents of these kids, because I know it’s harder on them then it is for all the other passengers. Many of us have flown with kids and have been through the stress of worrying about an airplane meltdown. Although I couldn’t sleep I knew the babies weren’t purposely keeping me awake and sending them and / or the parents negative energy wouldn’t help the situation. Reading became my activity of choice until the babies wore themselves down.
Hard to believe we had no customs or baggage issues in Frankfurt, but we hit double digit annoyances while getting the rental car. First was when we went to pickup the car they said I was at the wrong terminal because I didn’t give them my flight info so they needed to bring the car to me or I had to take a lesser car. We had two hours to get to the hospital so we didn’t mind waiting the half hour. We made the trek to our car with our limited luggage, loaded the car, jumped in and saw that the car was a manual transmission. I can drive a manual, but Crystal is not skilled on one and I didn’t want to take a chance with driving one with my leg if I had complications at the hospital and also wanted Crystal to be able to drive in an emergency situation. So we got out, walked back to the desk in the terminal and waiting another half hour as the attendant searched for an automatic transmission in the vicinity. Our options became take a car that would probably fit in our new luggage or keep the car we had and drive to Munich tomorrow on the way to the clinic and switch cars. Crystal checked four other rental places as we waited and we soon learned that automatic transmissions were as popular as driving pick-ups in Germany. She added a cargo van to our option, but that just makes me laugh thinking about her and I driving around Germany in a large cargo van. Not ideal, but we chose option two from our rental place…drive to Munich tomorrow. We actually got an upgraded vehicle so even though it will be a thirty to forty minutes out of our way tomorrow, Crystal will have the option to drive all week and we’ll have a very nice and even safer car (with the weather you never know).
Finally we made it to the hospital fifteen minutes before my ten o’clock appointment (4am in the US). After a little confusion we were sent back and I was scanned, prepped and finished by 10:45. We had to do the four hour observation again, which is a little annoying, but better safe than sorry. Crystal snuck into my area, cozied (probably a bad term) up in my bed and we were both able to sleep on and off for a coupe of hours. After the hospital Crystal and I went to a lovely Marriott donated by our good friend Rob Petruska had a very nice meal and went to bed---all without encountering any additional annoyances.
That was our trip into Germany. By themselves none of these annoyances would have made print, but together made the first day a test of patience and forgiveness. I’m becoming really good at not getting angry and remembering to forgive in the process and keep things in perspective.
From a medical standpoint we did get some news from Dr. Vogl. I hesitate to publish much at this point because there is still some confusion in my mind as to what the results really are. Maybe I shouldn't use the word confusion, Crystal and I just need more details. Dr. Vogl is a man of few words and you know if someone like Crystal can grill him and still not quite understand the conclusion it's evident we need to get more facts. We know Dr. Jacob will be very detailed with us and allow us to ask additional questions. The bottom line from Dr. Vogl was that my tumors are not as bad as the report explained in the US report. He did say, however, that he thought there was some new spots particullary in the lungs that he was focusing on during the chemoemboilzation treatment. He thought everything we touched last time was stable and said the tumors are like terroist and we have to continue to chase them down. He showed us pictures, but again, both Crystal and I couldn't get a firm read on exactly what we were seeing. The different scans all look so close it's hard to tell what's new, old, smaller or bigger. The different coloration is the only thing that is noticeable. We're going to sit tight another day, get the opinion from Dr. Jacob and go from there.
I feel fine from the treatment and looking forward to less annoyances as the week continues.
More updates to come...
Love,
Tony
These annoyances are all good lessons in the forgiveness process and I bring them up because the start of our trip to Germany became borderline comical with the small issues we seemed to face. As usual, we were running around slightly frantic while getting ready Sunday morning. We left the house on time, but also left with that feeling of “it’s a matter of time before we realize what we forgot feeling” because we had to rush. So we were both a little frazzled from rushing around as we pulled out of our driveway. I told Crystal in the car that as long as we had our passports, toothbrushes, and the PET scan we could make due all week. If you know Crystal, the probability of her forgetting something is slim, but we’ve all been there and it further sets up my lead in to these annoyances and how we were feeling at the time.
Crystal’s brother, Steve, was taking us to the airport. To save time we were dropping our kids over at his house to play with his kids and taking our van to the airport. First self-imposed annoyance was our first stop. I had to make some copies of some medical reports to take with me and download some information from our school computer onto a memory stick. We got to the school which is only a few miles away and realized we didn’t have a key to get into the building. Time was ticking, but had no choice but to do what we needed to do. Luckily Crystal’s mom, Donna, was still at our house wrapping up some loose ends when she came over to see us off. We called and she rushed over to let us in the building. Problem one averted.
Once at Steve’s, we said our goodbyes to the kids and off we were. The kids did great as we left and we both know they will be fine this week. As we got onto the highway we soon remembered that the van’s windshield wiper fluid was not working. I noticed this Saturday night as we were leaving to go out as a family to see friends and refilled the tank, but didn’t have time to check the pump or play mechanic when we first noticed it. Usually no big deal but the roads were perfect for the day where you needed wiper fluid. Cars were spitting enough muck on your windshield to make it hard to see, but not wet enough to use your wipers without making things worse. Soon Crystal was driving down I-70 and all I could think about was that ridiculous Jim Carey movie Pet Detective where he rides down the highway with his head out the window. Crystal did her best to find those tiny pinholes of vision and Steve and I turned MacGuyver on the situation. Good news was I grabbed a bottle of water from our garage so Steve thought he may be able to reach out the window and wet the windshield, bad news was the bottle was frozen from the cold weather. Now we’re driving down the highway with the heat on high trying to melt the ice to help clean the windshield. You get the picture. Long story short we made it to the airport without pulling over or getting any water out of the bottle, but not without some laughter. We passed through problem two (hopefully Steve had a better return trip home…he had more time to pull over so I’m sure it was better).
We walk into an empty airport, got our boarding passes and begin to check our bags. We bought a new piece of luggage for Christmas because our big bag was getting a little worn. I bought a big piece because the airlines are getting so stingy with charging for extra luggage. Eventhough we both get two free checked bags for an international flight, Crystal and I were so proud of ourselves for getting everything into two suitcases (admittedly they were both 99% full), but I thought the less luggage we would have to haul through airports, rental car facilities, hotels, etc. would be better. As the check-in attendant took our bags she soon informed us that one of our bags was nine pounds overweight. We would have to dump some stuff, somehow carry it on, or rearrange how we packed. Steve was gone, we had no extra bag and the one carryon we had was relatively full. We opted to rearrange the suitcases and show the world our underwear. As I looked back, the kiosk that was a ghost town moments ago had now turned into a thriving metropolis. The one open lane Crystal and I started now had four people behind us and more on the way. We made it work by rearranging our luggage in front of a crowd that seemed like thousands and most importantly made it through annoyance number three.
I was looking forward to not getting the full body search at security since this was my first time flying without my internal pump. With the pump I always had to get stopped and do the whole pat down thing during the security check. I smiled as I didn’t beep through the security door and smiled even bigger when the pulled me aside for more checks. It wasn’t a full blown body search as usual with the rubber gloves, but it was an extra step and by now, after annoyance four, I realized this was going to be a day where perspective would be important. Small issue on the flight to Atlanta that lead to number five. Crystal and I had a two hour lay over in Atlanta so the twenty minute wait the pilot relayed to us on the Indianapolis runway wasn’t terrible, but was enough to include in this entry.
We get to Atlanta and had enough time to sit down and have a quick snack since we both knew the two squares we were going to receive going to Germany weren’t exactly five star quality (not complaining, just making a point). There was a little Mexican restaurant right next to our gate so sat down and make the decision to split a super nacho versus a chicken quesadilla. Someone should have tapped us on the shoulder and asked us what in the hell we were thinking to consider Mexican right before a nine hour flight. That same person should have beaten us over the head when we went with the super nachos with chili over the rather plain chicken quesadilla. We laughed about it when the food arrived as we watched our neighbors eat a baked potato with broccoli, but down the hatchet the chips went. I included this piece in my annoyance because when I think of super nachos we thought we would get lettuce, tomatoes, peppers, beans, etc. This one came with chili (we were smart enough to ask for the chili on the side), cheese and salsa. Not so super.
On the plane to Germany Crystal and I were hoping we would have an extra seat next to us the plane so we could spread out a little. Annoyance number seven came into play when somehow our two window seats were switched to two inside row seats when we checked in so we had to play the seating lottery and hope the seat next to us was empty. Of course it wasn’t and there were just enough empty seats where most everyone could sit comfortably around us except for us. Annoyance number eight came when we were up in the air, I started a movie, and my head set didn’t work. Luckily, this annoyance worked out to our benefit since we asked the man sitting next to Crystal to move back a row where there were two empty seats so Crystal and I could use the two workable headsets in the row. The comedy of errors continued but it seemed to be turning our way.
Then I fell finally fell asleep and woke up forty five minutes into my deep sleep to the crying of two babies. Not only were our window seats changed but we were sitting strategically between to sets of babies…one about six rows in front of us and one about six rows behind us. After a nice movie and mediocre meal I settled into my nap and woke up to the sound of two babies having a competition on who could cry the loudest. The winner was by far the one behind me, but annoyance number nine really had no winners. I always feel badly for the parents of these kids, because I know it’s harder on them then it is for all the other passengers. Many of us have flown with kids and have been through the stress of worrying about an airplane meltdown. Although I couldn’t sleep I knew the babies weren’t purposely keeping me awake and sending them and / or the parents negative energy wouldn’t help the situation. Reading became my activity of choice until the babies wore themselves down.
Hard to believe we had no customs or baggage issues in Frankfurt, but we hit double digit annoyances while getting the rental car. First was when we went to pickup the car they said I was at the wrong terminal because I didn’t give them my flight info so they needed to bring the car to me or I had to take a lesser car. We had two hours to get to the hospital so we didn’t mind waiting the half hour. We made the trek to our car with our limited luggage, loaded the car, jumped in and saw that the car was a manual transmission. I can drive a manual, but Crystal is not skilled on one and I didn’t want to take a chance with driving one with my leg if I had complications at the hospital and also wanted Crystal to be able to drive in an emergency situation. So we got out, walked back to the desk in the terminal and waiting another half hour as the attendant searched for an automatic transmission in the vicinity. Our options became take a car that would probably fit in our new luggage or keep the car we had and drive to Munich tomorrow on the way to the clinic and switch cars. Crystal checked four other rental places as we waited and we soon learned that automatic transmissions were as popular as driving pick-ups in Germany. She added a cargo van to our option, but that just makes me laugh thinking about her and I driving around Germany in a large cargo van. Not ideal, but we chose option two from our rental place…drive to Munich tomorrow. We actually got an upgraded vehicle so even though it will be a thirty to forty minutes out of our way tomorrow, Crystal will have the option to drive all week and we’ll have a very nice and even safer car (with the weather you never know).
Finally we made it to the hospital fifteen minutes before my ten o’clock appointment (4am in the US). After a little confusion we were sent back and I was scanned, prepped and finished by 10:45. We had to do the four hour observation again, which is a little annoying, but better safe than sorry. Crystal snuck into my area, cozied (probably a bad term) up in my bed and we were both able to sleep on and off for a coupe of hours. After the hospital Crystal and I went to a lovely Marriott donated by our good friend Rob Petruska had a very nice meal and went to bed---all without encountering any additional annoyances.
That was our trip into Germany. By themselves none of these annoyances would have made print, but together made the first day a test of patience and forgiveness. I’m becoming really good at not getting angry and remembering to forgive in the process and keep things in perspective.
From a medical standpoint we did get some news from Dr. Vogl. I hesitate to publish much at this point because there is still some confusion in my mind as to what the results really are. Maybe I shouldn't use the word confusion, Crystal and I just need more details. Dr. Vogl is a man of few words and you know if someone like Crystal can grill him and still not quite understand the conclusion it's evident we need to get more facts. We know Dr. Jacob will be very detailed with us and allow us to ask additional questions. The bottom line from Dr. Vogl was that my tumors are not as bad as the report explained in the US report. He did say, however, that he thought there was some new spots particullary in the lungs that he was focusing on during the chemoemboilzation treatment. He thought everything we touched last time was stable and said the tumors are like terroist and we have to continue to chase them down. He showed us pictures, but again, both Crystal and I couldn't get a firm read on exactly what we were seeing. The different scans all look so close it's hard to tell what's new, old, smaller or bigger. The different coloration is the only thing that is noticeable. We're going to sit tight another day, get the opinion from Dr. Jacob and go from there.
I feel fine from the treatment and looking forward to less annoyances as the week continues.
More updates to come...
Love,
Tony
Saturday, January 17, 2009
Lessons learned...
Tomorrow Crystal and I make our second journey to Germany. I’ve said it in the journal and to numerous people that I am really looking forward to this trip. Not sure I’m so excited about seeing Dr. Vogl and his scalpel, but I am looking forward to hearing his opinion along with all the other doctor’s while I am there. One of the difficult parts about having treatment in Germany is losing that comfort zone once you are gone. No matter what the news, I know I will feel comforted there and that’s something I could use right now. Dr. Jacob e-mailed me today and said after chemoembolization the lesions always show up bigger. I had two doses of chemoembolization in October and will have another on Monday. No guarantee from her, but it was nice to hear it again that she wants to see the scans before I “freak”.
This trip will be much different than the first. We know our way around the area, know the “hot spots”, have become really advanced in the German language (I think I’ve doubled my vocabulary from two words to four this trip) and most importantly, feel like we pretty much know what to expect. The gang (other patients) and the weather will be different, but bottom line is we’re feeling 100% less anxious than we did three months ago the night before we were leaving.
We’ve learned some things from the last trip that we hope will make this trip better considering our first experiences. We…
· …brushed up on our 80’s music all week so we can sing along in the restaurants.
· …packed washcloths since they don’t exist in Germany
· …tried to accommodate a pillow or two in our luggage due to the German pillow being the equivalent of a sheet with a pack of cotton balls in between. These people are master engineers, but can’t design a suitable pillow? Maybe after all the beer a pillow doesn’t matter.
· …are much more cognizant that there are some areas on the autobahn that have speed limits.
· …learned to stay away from the unrefrigerated milk, the green and pink eggs, as well as any meat on a menu that you are not absolutely certain about.
· …tried to rent a pick-up truck just to see if pick-ups are actually driven in Germany. If you’re wondering about the results our rental seats five comfortable (inside) and we won’t be able to haul any large loads.
· …have our Sunday meals planned when the entire town basically shuts down. I still say the US needs to go back to closing everything on Sunday.
· …won’t be alarmed when we see dogs entering restaurants.
There’s plenty more, but I’ll spare everyone my attempt at humor. Most of all we have learned to try to enjoy the time we are there even though the circumstances may not always seem the best. I try not to get to high during the good times and not to down during the bad times. We continue to ask the Holy Spirit for guidance and know we are not walking alone in this journey.
Thanks, as always, to all the well wishes from so many of you. I’m still convinced we can do this!
More updates to come, from the mother country…
Love,
Tony
This trip will be much different than the first. We know our way around the area, know the “hot spots”, have become really advanced in the German language (I think I’ve doubled my vocabulary from two words to four this trip) and most importantly, feel like we pretty much know what to expect. The gang (other patients) and the weather will be different, but bottom line is we’re feeling 100% less anxious than we did three months ago the night before we were leaving.
We’ve learned some things from the last trip that we hope will make this trip better considering our first experiences. We…
· …brushed up on our 80’s music all week so we can sing along in the restaurants.
· …packed washcloths since they don’t exist in Germany
· …tried to accommodate a pillow or two in our luggage due to the German pillow being the equivalent of a sheet with a pack of cotton balls in between. These people are master engineers, but can’t design a suitable pillow? Maybe after all the beer a pillow doesn’t matter.
· …are much more cognizant that there are some areas on the autobahn that have speed limits.
· …learned to stay away from the unrefrigerated milk, the green and pink eggs, as well as any meat on a menu that you are not absolutely certain about.
· …tried to rent a pick-up truck just to see if pick-ups are actually driven in Germany. If you’re wondering about the results our rental seats five comfortable (inside) and we won’t be able to haul any large loads.
· …have our Sunday meals planned when the entire town basically shuts down. I still say the US needs to go back to closing everything on Sunday.
· …won’t be alarmed when we see dogs entering restaurants.
There’s plenty more, but I’ll spare everyone my attempt at humor. Most of all we have learned to try to enjoy the time we are there even though the circumstances may not always seem the best. I try not to get to high during the good times and not to down during the bad times. We continue to ask the Holy Spirit for guidance and know we are not walking alone in this journey.
Thanks, as always, to all the well wishes from so many of you. I’m still convinced we can do this!
More updates to come, from the mother country…
Love,
Tony
Wednesday, January 14, 2009
I'll need that second opinion...
No use beating around the bush tonight. Scan results are in and the results were not what I wanted. Unfortunately from the perspective of the US radiologist there seems to be an overall theme of tumor progression in both my liver and lungs. I'm not sure the news has completely set in, but at the same time I'm still holding out to see what the doctors in Germany say before I completely bring my emotions into play. Disappointed doesn't do justice to what I feel tonight. Dr. Jacob will not "sugar coat" the results so I know that if there is true progression she'll let me know. At the same time, I think I'll feel more comfortable being in Germany if the news isn't what I was hoping knowing we will have an immediate plan in place.
I've said this a hundred times in this journal, but I think I'm a pretty logical guy and these results don't make sense. My blood counts are good, overall I feel good, I'm gaining weight and think I look good (not jaundiced, etc.), and I'm not in any pain. Logically it makes no sense to me how cancer could be progressing in my body if things are going so well. I really don't understand it. So I'll continue hoping that warning Dr. Jacob gave me about the US radiologist before I left Germany are true. I have nothing else to go on right now.
I stop chemo tomorrow and I have tons to do before we leave Sunday so I don't think I'll have much time to worry about these results right now. Wish I had better news to report, maybe I will in several days once I'm back in the mother country.
More updates to come...
Love,
Tony
I've said this a hundred times in this journal, but I think I'm a pretty logical guy and these results don't make sense. My blood counts are good, overall I feel good, I'm gaining weight and think I look good (not jaundiced, etc.), and I'm not in any pain. Logically it makes no sense to me how cancer could be progressing in my body if things are going so well. I really don't understand it. So I'll continue hoping that warning Dr. Jacob gave me about the US radiologist before I left Germany are true. I have nothing else to go on right now.
I stop chemo tomorrow and I have tons to do before we leave Sunday so I don't think I'll have much time to worry about these results right now. Wish I had better news to report, maybe I will in several days once I'm back in the mother country.
More updates to come...
Love,
Tony
Sunday, January 11, 2009
Big week...
This past week the old Tony returned. My energy level was much better, physically I felt close to normal (whatever normal is), I laughed much more and generally enjoyed life like I should. Although I am eleven days into my second round of chemo, I'm finally starting to feel more like myself.
Last week was a busy week at work and at home. I skipped my IVs at my naturopath due to my schedule at work and even though I was tired when I got home every night, I wasn't exhausted to the point where I needed to go straight to bed. May not sound like progress to some, but to me having some energy back has been huge. William celebrated his fourth birthday Wednesday and I was able to "be involved". I was able to help Crystal more around the house. I was able to work full days without wondering how I was going to make it to the end of the day. I was able to enjoy times with family and friends. I've had several good days since October, but never this many in a row, so maybe my 2009 resolution is working.
I big step towards that resolution takes place Tuesday this week. I have a PET scan Tuesday morning for a status check before my return to Germany next week. I've had numerous PET scans over the last four years and my anxiety level remains at an all time high during these tests. This one will be no different. The tests themselves are no big deal, waiting for the results is the hard part. Obviously hoping for positive news based on our discoveries in Germany, but also have been warned by my doctors in Germany that seemingly bad news from radiologist here in the States, may not be as bad as seen by the doctors in Germany. Apparently they have had some patients come from the US where US radiologist have not been familiar with some of the treatments being performed in Germany and measure certain markers as tumor growth when the tumors aren't really grown. Obviously I hope I get the news I'm wanting in the States so I don't have to worry about the results before I have the doctors in Germany read the scans, but we'll deal with the cards we are given this week and move forward accordingly. I'll be sure to give more frequent updates this week and while I'm in Germany. Honestly I don't know when I'll get the results this week, I'm not one to call and pester for them and if I don't hear from my doctor (which would surprise me) I wouldn't be one to call and ask. What matters to me now is what Dr. Vogl, Dr Friedrikson, and Dr. Jacob say about my test.
That's my big news for the week. This week should begin another adventure as my second round of chemo ends, my PET scan results are revealed, and we begin wrapping up loose ends before our trip to Germany. I know last time I started feeling worse when the chemo stopped, so we'll see if that occurs this time as well, but for now I'm going to continue to enjoy the good days. Good news is that I'll be in front of Dr. Jacob in a week so she'll have a chance to see any symptoms and I'm sure do her best to help prevent them.
More updates to come...
Love,
Tony
Last week was a busy week at work and at home. I skipped my IVs at my naturopath due to my schedule at work and even though I was tired when I got home every night, I wasn't exhausted to the point where I needed to go straight to bed. May not sound like progress to some, but to me having some energy back has been huge. William celebrated his fourth birthday Wednesday and I was able to "be involved". I was able to help Crystal more around the house. I was able to work full days without wondering how I was going to make it to the end of the day. I was able to enjoy times with family and friends. I've had several good days since October, but never this many in a row, so maybe my 2009 resolution is working.
I big step towards that resolution takes place Tuesday this week. I have a PET scan Tuesday morning for a status check before my return to Germany next week. I've had numerous PET scans over the last four years and my anxiety level remains at an all time high during these tests. This one will be no different. The tests themselves are no big deal, waiting for the results is the hard part. Obviously hoping for positive news based on our discoveries in Germany, but also have been warned by my doctors in Germany that seemingly bad news from radiologist here in the States, may not be as bad as seen by the doctors in Germany. Apparently they have had some patients come from the US where US radiologist have not been familiar with some of the treatments being performed in Germany and measure certain markers as tumor growth when the tumors aren't really grown. Obviously I hope I get the news I'm wanting in the States so I don't have to worry about the results before I have the doctors in Germany read the scans, but we'll deal with the cards we are given this week and move forward accordingly. I'll be sure to give more frequent updates this week and while I'm in Germany. Honestly I don't know when I'll get the results this week, I'm not one to call and pester for them and if I don't hear from my doctor (which would surprise me) I wouldn't be one to call and ask. What matters to me now is what Dr. Vogl, Dr Friedrikson, and Dr. Jacob say about my test.
That's my big news for the week. This week should begin another adventure as my second round of chemo ends, my PET scan results are revealed, and we begin wrapping up loose ends before our trip to Germany. I know last time I started feeling worse when the chemo stopped, so we'll see if that occurs this time as well, but for now I'm going to continue to enjoy the good days. Good news is that I'll be in front of Dr. Jacob in a week so she'll have a chance to see any symptoms and I'm sure do her best to help prevent them.
More updates to come...
Love,
Tony
Sunday, January 4, 2009
New Year's Resolution
My number one goal for the past three New Years has been to end the year cancer free. There is no reason to stop that trend this year, so you could call “being cancer free” my New Years resolution for 2009. Even though it has only been four years it seems like I’ve been living with cancer forever. Unfortunately cancer is such a big part of my life it’s hard to imagine a life without it. I would do anything…anything…to be cancer free, so in order to adjust to a life without cancer I’m going to try to live 2009 like it’s already gone. Crazy, I know, but cancer in many ways is much tougher mentally than physically. Keeping ahead of the disease mentally is as important as keeping ahead of the disease physically. I took some time to reflect with Crystal over New Year's break and although I’m amazed at our progress, experiences and the odds we have overcome, the last few months have been mentally exhausting so I’m using 2009 as my fresh start to regain that feeling of hope.
I remember when I was Ashley’s age my biggest worry was missing recess or not having enough time to play with my friends. Middle school and high school brought worries of fitting in with my friends. College my biggest problem was going to class and studying. Then I hit the real world and saw how crazy my “problems” seemed in school since I now had bills to pay, a career to build, a wife and eventually kids to take care of. I didn’t think my problems could get any bigger. Now I look back at all of these “problems” and would give anything to have these as my main source of worry. I told Crystal Thursday on the eve of starting my second round of chemo how nice it would be to have a headache, the flu, a bad cold, body aches or pains, etc. all while being cancer free.
This is not a self pity party, I realize there are many people struggling with all kinds of different issues much more troubling them mine. I also can sympathize somewhat with people that are having “bad days” or “not feeling good”, everyone deserves and has the right to bad days as long as we don’t dwell on them. I just think my perspective over the last four years has changed so much that once this is over I will never see the world the same again.
I know the only way to live cancer free is start believing that I can be cancer free, so that becomes my focus in 2009. I also know my actions would not be the same if I had my same aches and pains, but knew I didn’t have cancer. Would I lie on the couch and be miserable if I had a pain in my abdomen knowing cancer had nothing to do with it? Not a chance. The new year for me brings renewed hope and my focus back into perspective. Without getting into details, I have had some good things happen over the past couple of weeks and still believe I am on the right path. My only choice is to believe in what I am doing and believe that my body has the ability to turn this thing around.
In two weeks we will be back in Germany. My aches and pains have not gone away and my second round of chemo is in progress, but my focus has changed. Here’s looking forward to another successful year with, I’m sure, quite a few more adventures.
More updates to come…
Love,
Tony
I remember when I was Ashley’s age my biggest worry was missing recess or not having enough time to play with my friends. Middle school and high school brought worries of fitting in with my friends. College my biggest problem was going to class and studying. Then I hit the real world and saw how crazy my “problems” seemed in school since I now had bills to pay, a career to build, a wife and eventually kids to take care of. I didn’t think my problems could get any bigger. Now I look back at all of these “problems” and would give anything to have these as my main source of worry. I told Crystal Thursday on the eve of starting my second round of chemo how nice it would be to have a headache, the flu, a bad cold, body aches or pains, etc. all while being cancer free.
This is not a self pity party, I realize there are many people struggling with all kinds of different issues much more troubling them mine. I also can sympathize somewhat with people that are having “bad days” or “not feeling good”, everyone deserves and has the right to bad days as long as we don’t dwell on them. I just think my perspective over the last four years has changed so much that once this is over I will never see the world the same again.
I know the only way to live cancer free is start believing that I can be cancer free, so that becomes my focus in 2009. I also know my actions would not be the same if I had my same aches and pains, but knew I didn’t have cancer. Would I lie on the couch and be miserable if I had a pain in my abdomen knowing cancer had nothing to do with it? Not a chance. The new year for me brings renewed hope and my focus back into perspective. Without getting into details, I have had some good things happen over the past couple of weeks and still believe I am on the right path. My only choice is to believe in what I am doing and believe that my body has the ability to turn this thing around.
In two weeks we will be back in Germany. My aches and pains have not gone away and my second round of chemo is in progress, but my focus has changed. Here’s looking forward to another successful year with, I’m sure, quite a few more adventures.
More updates to come…
Love,
Tony
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