As much as I enjoy being home, I would be lying if I said this was an easy week. I've told numerous people this week being in Germany gives me such a sense of security....it's a place where I feel safe with what I have to face physically every day. Unfortunately it's not home, so as safe as I feel there physically obviously there is a big void when I am there in other aspects.
You name the emotion this week and I pretty much went through it. I'm slowly getting off all of the "unnatural" meds, which probably have been helping some physically, but are difficult on me emotionally. Pain meds and steroids aren't my idea of fun and not sure how anyone can actually take any of those drugs voluntarily. Dr. Jacob thought it would take at least a week before I started feeling better, so I hope she is right and I start to turn this thing around. I haven't been bed ridden, but I've been really tired and have been in some pain due to all the inflammation in my chest. To put things in perspective though, I must admit that I was very ambitious yesterday and tried to play nine holes of golf. The round was not pretty and I can't say I was "finishing" holes, but it did feel good to get a little exercise. I went from barely being able to hold the club on the first couple of holes to at least swinging freely by the end. The company was great and although I probably shouldn't have tried to play I needed some reassurance from myself that I was strong enough to swing some golf clubs. So...I guess I can't ask anyone to feel sorry for me for "not feeling good", but on the golf course, right?
Between work and spending time with the family, I spent most of my week trying to get organized with my medication and diet as well as work on the financial piece of the last couple of trips to Germany. Obtaining all the medications that I did not bring back from Germany is not difficult, but we changed my plan enough that I had some research to do along with several follow-up e-mails to Dr. Jacob to make sure I understood exactly what needed to be done. I'll have some more work to do the next couple of weeks as we add a few more things each week.
I look back at the last three months and even though there could be nothing that I did that caused progression, I took this week to look at the things that I could eliminate that "could" have caused some issues. My diet is always something that I know could cause issues, although you really never know. I'll hang my hat on a pretty solid diet over the last several years, but I would agree that I was a little more lax than usual over the last three months. I don't want to make myself crazy over diet, but this week was one where I started to plan again and try to eliminate and / or add foods that make sense. I won't be perfect, but I want to be better. Sounds easy, but trying to eat healthy is nearly a full time job....so again, I'm not going to be crazy, but will be spending more time trying to eat the right foods when I can.
I don't think my body has decided what time zone to be in yet either which hasn't helped. I broke out the little green pills tonight to try to get some sleep....let's hope I don't doze of mid sentence. When you add everything up this week I think being restless is probably a little natural. I plan to start off the week with a good nights sleep and try to build on that.
My intent is not sound to down, but an update is and update and overall it's been a difficult week. I don't think I expected this week to be easy and unfortunately it wasn't. I've always been one to snap out of a funk pretty quickly and I know this won't be any different. We continue to have so much support from friends and family which is much appreciated. I turned thirty-seven this past week, so thank you all for the birthday wishes. I've made the same birthday wish the past four years...I know dreams can come true.
More updates to come....
Love,
Tony
Sunday, May 31, 2009
Monday, May 25, 2009
I'm home...
Going to keep this quick, but wanted to let everyone know that I made it home safely without any issues. The flight was long as expected, but I felt fairly good and my rash remained calm. I'm not sure if my body has just gotten used to the antibody or whether I'm on so much medication that the signs are just being masked well.
There is no better feeling seeing your wife and kids after a physically and emotionally draining three weeks. We lit up the airport baggage claim area with hugs and tears, there is nothing better than having the three of them in my arms. I was tired, but very hungry from the flight (since they decide not to feed you much on the ride home), so we grabbed a bite to eat, came home and all went to bed.
I decided to stay away from my little green friend last night thinking that my own bed would be enough to warrant a good nights sleep, but may have revisited that decision if I had to do it all over again. Being overtired and a little off from the flight made for a restless night and I soon found myself up around 5:30am this morning ready for lunch. I started having some chest pain again last night and this morning which didn't help me sleep either, but had some little white friends that made things better by the afternoon.
Crystal, the kids and I spent a relaxing day today with Crystal's family. Was nice to have an extra day today before the madness begins. I have a massive "to-do" list that I will start to tackle tomorrow. As of now this week is looking a little daunting, with getting medication, IVs, work, family, rest, etc...but I know things will work out as they always do. I intend to stay as stress free (if that is possible) as I can during this eight week period...I don't want any obstacles for this medication.
Simply put tonight...it's good to be home.
More updates to come....
Love,
Tony
There is no better feeling seeing your wife and kids after a physically and emotionally draining three weeks. We lit up the airport baggage claim area with hugs and tears, there is nothing better than having the three of them in my arms. I was tired, but very hungry from the flight (since they decide not to feed you much on the ride home), so we grabbed a bite to eat, came home and all went to bed.
I decided to stay away from my little green friend last night thinking that my own bed would be enough to warrant a good nights sleep, but may have revisited that decision if I had to do it all over again. Being overtired and a little off from the flight made for a restless night and I soon found myself up around 5:30am this morning ready for lunch. I started having some chest pain again last night and this morning which didn't help me sleep either, but had some little white friends that made things better by the afternoon.
Crystal, the kids and I spent a relaxing day today with Crystal's family. Was nice to have an extra day today before the madness begins. I have a massive "to-do" list that I will start to tackle tomorrow. As of now this week is looking a little daunting, with getting medication, IVs, work, family, rest, etc...but I know things will work out as they always do. I intend to stay as stress free (if that is possible) as I can during this eight week period...I don't want any obstacles for this medication.
Simply put tonight...it's good to be home.
More updates to come....
Love,
Tony
Saturday, May 23, 2009
One final day...
Elvis woke up this morning after two good nights sleep thanks to my little green pill. Sleeping through the night the past two nights has been some of the best therapy I have had since I have been here. There is nothing worse than being so tired you can not sleep while not feeling good. I can tell my mood and energy level has been much better.
My rash had subsided a little yesterday, but I'm not sure how it could not have based on everything we are doing for it. I'm getting about six hours of IVS a day, I have three different ointments I'm constantly rubbing on it and keep my belly iced down while I'm in the Klinic. We really wanted some clear spots to poke for my injections yesterday. There weren't many, but even though she wanted to inject everything on my right side again above my liver, she opted to do half on one side above my liver and half on my left side.
Par for the course would have been a good day yesterday, not feeling good today and a full blown outbreak tomorrow. So far we are one for two. I had a nice day yesterday on my own. I woke up late thanks to my little green friend and spent most of my morning and mid afternoon in the Klinic. There is a lady here also getting IVs that comes and goes most of the day. She always says she can count on my being here no matter what time she comes to the room. After my IVs I treated myself to a yogurt cone and sat by the lake to read the paper. We had another beautiful day yesterday and looks like we are off to a good start today. I went home to pack after the lake because I didn't know how much energy I would have today and rested for another hour or so before heading to eat.
There is a new restaurant here that Eric, Doug and I went to that serves hamburgers and pizzas that is kind of a fun atmosphere so I decided to go there. I was early (6:30), most people don't start eating around here until 8:00 or after so I had a nice dinner listening to the band they had for that night warm up. Dr. Jacob started me on steroids again, mainly for this rash and to aid my trip home. Because I won't be getting IVs she wants to give me something to help keep me comfortable for tomorrows ride. As usual they make me a little emotional, so I tend to tear up for no reason at all....yesterday at dinner they started playing the Stones "Honkey Tonk Woman" and it brought tears to my eyes. I really didn't know I liked that song so much....but maybe I do. Thank God they didn't play any Elvis, I may have been crying like a baby.
I woke up today after another good nights sleep thanks again to my little green friend. On day two I usually am feeling the effects of the shot, mostly just really tired. So far, no complaints. I feel pretty good with plenty of energy. The IVs always help so I hope that things won't go down hill later. I have decided to eat at the Klinic tonight just in case things take a turn for the worse so I don't have to find a place to eat. We'll have to see what tomorrow brings, but I'm keeping my fingers crossed I have energy. I can deal with the rash as long as I have some energy to get around.
I'm a little disappointed today because Dr. Jacob is not here and I didn't know she was going to be gone. She had my plan ready, but I had a long list of questions for her that I was wanting answers on. I started going through them with the "interim" doctor and we ended up getting Dr. Jacob on the phone, so I got everything answered. My therapy list continues to grow since we have added some new things and only took out one or two elements of what I usually do at home. She wants me to have a PET scan in eight weeks and see where we stand. More than likely I'll be back here in early August. She wants Dr. Vogl to inject this new antibody directly into my liver. Unless someone beats me to the punch I'd be the first in the world....let's just say it will be okay if someone does beat me to the punch, but I'll be willing to be the first if I have to.
The next couple of months will be quite the waiting game. Of course I'm saddened by what we have found out this trip, but at the same time I'm eerily at peace with it. I'm sure I'll have my moments in the next couple of months, but I think I'll be feeling okay and I have to give this a chance. Dr. Jacob came to me yesterday with a medical journal on colon cancer and said there was nothing new in Germany for colon cancer treatment. She went through some of the "new" stuff (all of which I have had (mainly chemos)). So we joked about how "cutting edge" our countries have become. She said there was a Chinese drug that has been used in China that she would consider putting me on depending on how I respond to this new antibody. I'm hoping we don't have to go that route, but at least there is another possible option.
These last three weeks have been very eventful, not at all what I was expecting when I left. One thing about cancer is you never really know, which is one of the most difficult things to cope with. If you feel terrible your disease could be better and if you feel great your disease can be getting worse. I always try to go into scans without expectations, but I can tell you that's an impossible feat and one I'm not convinced I'll ever master.
Once again, I want to thank all of the people who have been thinking of me, praying for me, and sending me and Crystal, Ashley and William well wishes. This is just as difficult for them as me and the support Crystal receives and the hugs the kids get mean so much to me. I've written this numerous times, but I know with 100% degree of certainty that without all of the support I would not be here right now. Family and friends can not control what is occurring in my body, but they can help feed my mental and emotional well being which I know helps me with my personal battle. I've been through so much physically, but my physical struggles pale in comparison to what I face mentally everyday. I thank you all from the bottom of my heart. See you in the friendly confines of Indiana soon!
More updates to come....
Love,
Tony
My rash had subsided a little yesterday, but I'm not sure how it could not have based on everything we are doing for it. I'm getting about six hours of IVS a day, I have three different ointments I'm constantly rubbing on it and keep my belly iced down while I'm in the Klinic. We really wanted some clear spots to poke for my injections yesterday. There weren't many, but even though she wanted to inject everything on my right side again above my liver, she opted to do half on one side above my liver and half on my left side.
Par for the course would have been a good day yesterday, not feeling good today and a full blown outbreak tomorrow. So far we are one for two. I had a nice day yesterday on my own. I woke up late thanks to my little green friend and spent most of my morning and mid afternoon in the Klinic. There is a lady here also getting IVs that comes and goes most of the day. She always says she can count on my being here no matter what time she comes to the room. After my IVs I treated myself to a yogurt cone and sat by the lake to read the paper. We had another beautiful day yesterday and looks like we are off to a good start today. I went home to pack after the lake because I didn't know how much energy I would have today and rested for another hour or so before heading to eat.
There is a new restaurant here that Eric, Doug and I went to that serves hamburgers and pizzas that is kind of a fun atmosphere so I decided to go there. I was early (6:30), most people don't start eating around here until 8:00 or after so I had a nice dinner listening to the band they had for that night warm up. Dr. Jacob started me on steroids again, mainly for this rash and to aid my trip home. Because I won't be getting IVs she wants to give me something to help keep me comfortable for tomorrows ride. As usual they make me a little emotional, so I tend to tear up for no reason at all....yesterday at dinner they started playing the Stones "Honkey Tonk Woman" and it brought tears to my eyes. I really didn't know I liked that song so much....but maybe I do. Thank God they didn't play any Elvis, I may have been crying like a baby.
I woke up today after another good nights sleep thanks again to my little green friend. On day two I usually am feeling the effects of the shot, mostly just really tired. So far, no complaints. I feel pretty good with plenty of energy. The IVs always help so I hope that things won't go down hill later. I have decided to eat at the Klinic tonight just in case things take a turn for the worse so I don't have to find a place to eat. We'll have to see what tomorrow brings, but I'm keeping my fingers crossed I have energy. I can deal with the rash as long as I have some energy to get around.
I'm a little disappointed today because Dr. Jacob is not here and I didn't know she was going to be gone. She had my plan ready, but I had a long list of questions for her that I was wanting answers on. I started going through them with the "interim" doctor and we ended up getting Dr. Jacob on the phone, so I got everything answered. My therapy list continues to grow since we have added some new things and only took out one or two elements of what I usually do at home. She wants me to have a PET scan in eight weeks and see where we stand. More than likely I'll be back here in early August. She wants Dr. Vogl to inject this new antibody directly into my liver. Unless someone beats me to the punch I'd be the first in the world....let's just say it will be okay if someone does beat me to the punch, but I'll be willing to be the first if I have to.
The next couple of months will be quite the waiting game. Of course I'm saddened by what we have found out this trip, but at the same time I'm eerily at peace with it. I'm sure I'll have my moments in the next couple of months, but I think I'll be feeling okay and I have to give this a chance. Dr. Jacob came to me yesterday with a medical journal on colon cancer and said there was nothing new in Germany for colon cancer treatment. She went through some of the "new" stuff (all of which I have had (mainly chemos)). So we joked about how "cutting edge" our countries have become. She said there was a Chinese drug that has been used in China that she would consider putting me on depending on how I respond to this new antibody. I'm hoping we don't have to go that route, but at least there is another possible option.
These last three weeks have been very eventful, not at all what I was expecting when I left. One thing about cancer is you never really know, which is one of the most difficult things to cope with. If you feel terrible your disease could be better and if you feel great your disease can be getting worse. I always try to go into scans without expectations, but I can tell you that's an impossible feat and one I'm not convinced I'll ever master.
Once again, I want to thank all of the people who have been thinking of me, praying for me, and sending me and Crystal, Ashley and William well wishes. This is just as difficult for them as me and the support Crystal receives and the hugs the kids get mean so much to me. I've written this numerous times, but I know with 100% degree of certainty that without all of the support I would not be here right now. Family and friends can not control what is occurring in my body, but they can help feed my mental and emotional well being which I know helps me with my personal battle. I've been through so much physically, but my physical struggles pale in comparison to what I face mentally everyday. I thank you all from the bottom of my heart. See you in the friendly confines of Indiana soon!
More updates to come....
Love,
Tony
Thursday, May 21, 2009
"I'm all shook up"
I woke up this morning around 5:00am as usual (I still find it weird that most people in Indy are just going to bed). My sleeping habits this trip have not been good, I think mainly because of the medication, but for some reason can’t seem to get comfortable in the beds here. Germans apparently don’t believe in sheets, but they have these giant comforters they use, but then you get hot. I sleep with doors and windows open and have been using a curtain as a sheet, but I’m still hot at night—which doesn’t help. Because I have all of the doors and windows open the birds tend to wake me up around 5:00am too. I'm so lucky to be a morning person :) !
Typically the second day after my injection is a better one where I have more energy but the rash begins to show it’s teeth. Unfortunately the rash did show it’s teeth during the night, but my energy level was horrible. As much as I want to get home, I was thankful today was not the day. My rash had spread across my entire chest, under my arms, on my back, on my hands, feet and around my mouth. It is hot to the touch and feels and looks like a sunburn. I opted not to cook my eggs on my chest though this morning, took a rather painful shower and waited until about 7:45 to head to the Klinic. I knew I needed to get some treatment.
As soon as I walked in, my good friend and nurse Ailene was there to greet me. My nose started to bleed as I showed her my rash and basically told her I feel like I just got the tar beat out of me. As usual, the staff was on it. She called Dr. Jacob immediately who was on her way in and started me on my IVs. I was a little down today too, so she added in a much needed hug today too. Dr. Jacob was soon there and of course we sat down and mapped out what we needed to do. I'm like a broken record I know, but I can’t tell you how amazed I am with this woman. As we talk I sit and listen in amazement of this women's knowledge. I know she is good, but there is no one better at taking a snapshot of the current situation and finding ways to immediately solve them. I always tell her that its okay if I need to suffer, but she doesn’t want me to and does everything she can to make sure I’m comfortable.
The conclusion was that this injection really over stimulated my immune system. This is not a bad thing based on what we are hoping the antibody does, but she thinks the symptoms may get worse before they get better, especially after we take the last shot tomorrow. She tossed around splitting the injection into two cycles since we are increasing the dosage again, but decided not to. I was concerned about getting on a plane Sunday if these symptoms are what I will be dealing with so we talked about how we would combat those symptoms so I could get home. Six hours later I left the Klinic feeling much and the rash looking better as well. What makes me feel so secure with Dr. Jacob is I get instant validation from her after what she does. I always seem to feel better and today was no exception, so I'm beyond believing in what she says. If you know me, you know she is getting rapid fire questioning from me, but in the end I have no doubt that what she says is what I need to do.
She gave me some vitamin E pills to break open and put on my rash tonight, along with some aloe and antihistamine pills. Her concern about my lack of sleep has gotten to the level of giving me sleeping pills. I feel like Elvis (is that bad that I associate sleeping pills with Elvis?). If those don’t work tonight I’m screwed. Next option will be to grow some burns, play the guitar and shoot my sleeping pills with whisky. “Your body needs to rest Tony”, she says. “It has never seen anything like we are giving it and your immune system has not been this active for a long time.”
So like a good patient I spent the afternoon at home resting (without sleeping) and plan to go out and get a bite to eat and go over to the Klinic to work for a few more hours today. It’s Father’s Day here in Germany so I guess I should wish all those Father’s out there a Happy Father’s day from Germany. Should would be a joy to be with my kids today. Three more days…
After all the bitching and complaining I am doing okay. This has not been an easy ride, but I am in great hands and with very caring people surrounding me on a daily basis. Nothing would be better than being home, but I don’t want to be there if I need to be here giving my body what it needs. I know these last few days won’t take long at all.
More updates to come…
Love,
Tony
Typically the second day after my injection is a better one where I have more energy but the rash begins to show it’s teeth. Unfortunately the rash did show it’s teeth during the night, but my energy level was horrible. As much as I want to get home, I was thankful today was not the day. My rash had spread across my entire chest, under my arms, on my back, on my hands, feet and around my mouth. It is hot to the touch and feels and looks like a sunburn. I opted not to cook my eggs on my chest though this morning, took a rather painful shower and waited until about 7:45 to head to the Klinic. I knew I needed to get some treatment.
As soon as I walked in, my good friend and nurse Ailene was there to greet me. My nose started to bleed as I showed her my rash and basically told her I feel like I just got the tar beat out of me. As usual, the staff was on it. She called Dr. Jacob immediately who was on her way in and started me on my IVs. I was a little down today too, so she added in a much needed hug today too. Dr. Jacob was soon there and of course we sat down and mapped out what we needed to do. I'm like a broken record I know, but I can’t tell you how amazed I am with this woman. As we talk I sit and listen in amazement of this women's knowledge. I know she is good, but there is no one better at taking a snapshot of the current situation and finding ways to immediately solve them. I always tell her that its okay if I need to suffer, but she doesn’t want me to and does everything she can to make sure I’m comfortable.
The conclusion was that this injection really over stimulated my immune system. This is not a bad thing based on what we are hoping the antibody does, but she thinks the symptoms may get worse before they get better, especially after we take the last shot tomorrow. She tossed around splitting the injection into two cycles since we are increasing the dosage again, but decided not to. I was concerned about getting on a plane Sunday if these symptoms are what I will be dealing with so we talked about how we would combat those symptoms so I could get home. Six hours later I left the Klinic feeling much and the rash looking better as well. What makes me feel so secure with Dr. Jacob is I get instant validation from her after what she does. I always seem to feel better and today was no exception, so I'm beyond believing in what she says. If you know me, you know she is getting rapid fire questioning from me, but in the end I have no doubt that what she says is what I need to do.
She gave me some vitamin E pills to break open and put on my rash tonight, along with some aloe and antihistamine pills. Her concern about my lack of sleep has gotten to the level of giving me sleeping pills. I feel like Elvis (is that bad that I associate sleeping pills with Elvis?). If those don’t work tonight I’m screwed. Next option will be to grow some burns, play the guitar and shoot my sleeping pills with whisky. “Your body needs to rest Tony”, she says. “It has never seen anything like we are giving it and your immune system has not been this active for a long time.”
So like a good patient I spent the afternoon at home resting (without sleeping) and plan to go out and get a bite to eat and go over to the Klinic to work for a few more hours today. It’s Father’s Day here in Germany so I guess I should wish all those Father’s out there a Happy Father’s day from Germany. Should would be a joy to be with my kids today. Three more days…
After all the bitching and complaining I am doing okay. This has not been an easy ride, but I am in great hands and with very caring people surrounding me on a daily basis. Nothing would be better than being home, but I don’t want to be there if I need to be here giving my body what it needs. I know these last few days won’t take long at all.
More updates to come…
Love,
Tony
Wednesday, May 20, 2009
Short and sweet...
Going to keep it short today mainly because I'm fairly worn out and not much to update. My injection yesterday left me with a similar reaction last night and today as I had on the second go round. The worst part of the night was just not being able to sleep. Dr. Jacob believes my medication may play a part in that, so we may try some things on Friday night when we do the last injection. I also had six and a half hours of IVs yesterday, some of which made me sleep, so I am sure that didn't help either. I really miss my own bed too which adds to the lack of sleep...four more nights!!
Overall though, I'm surviving. I pretty much feel like I've been hit by a truck today so I'll hunker down on the couch and try to get some rest. The weather is nice today, so maybe I'll muster up enough energy for a short walk or sit in the sun for awhile. I've been working quite a bit over here and getting lots of treatment so the days go really fast. Dr. Jacob has told me several times, but today she told me again how tough she thinks I am. She can't believe how well I'm doing based on everything she is throwing at me. I thank my body for being so strong even though I don't always feel that way. My white blood cells finally started going in the right direction today which is positive and we are going to do a ultrasound on Friday to see if there are any differences from last week. That's all for today, looking forward to tomorrow when I know I'll start feeling better.
More updates to come....
Love,
Tony
Overall though, I'm surviving. I pretty much feel like I've been hit by a truck today so I'll hunker down on the couch and try to get some rest. The weather is nice today, so maybe I'll muster up enough energy for a short walk or sit in the sun for awhile. I've been working quite a bit over here and getting lots of treatment so the days go really fast. Dr. Jacob has told me several times, but today she told me again how tough she thinks I am. She can't believe how well I'm doing based on everything she is throwing at me. I thank my body for being so strong even though I don't always feel that way. My white blood cells finally started going in the right direction today which is positive and we are going to do a ultrasound on Friday to see if there are any differences from last week. That's all for today, looking forward to tomorrow when I know I'll start feeling better.
More updates to come....
Love,
Tony
Tuesday, May 19, 2009
Three down....one to go.
Getting some energy back just in time for the third shot today. Although I'm not having major reactions, it's evident that the shots dramatically slow me down for a day or two. I don't sleep very well at night mainly because of the pain the rash causes and my high body temperature, but it's not like I'm a ball of energy during the day so I think I'm getting enough rest. The rash has begun to subside today, but today we are scheduled for another shot. I can't say I'm excited about another shot, especially since I'm getting my energy back, but I know after today we are down to the last one.
I'm not staying at the Klinic tonight. Dr. Jacob does not believe I will have a major reaction...more like the second round than the first. I have her cell phone and I'm minutes from the Klinic if I need help. I also have quite a bit of medication with me so I know I can survive if a reaction occurs. My shot today is double the quantity that I received on Saturday. Her plan is to go under my skin today right over my liver. Dr. Jacob believes I may have a little more pain in my liver, but also believes we may get more of an effect in the liver as well. We're trying to avoid my lower right abdomen where my original rash was as well, even though it is nearly gone. We've been concentrating the past couple of days on my inflammation, red and white blood counts. My IVS have increased considerably, so I spend a little more time in the Klinic in the morning, but they seem to make me feel better.
Kept busy yesterday doing laundry and working all day. The laundry machine alone here runs for almost a hour and a half, so my two loads of laundry took most of the day. I smell good again though which is a bonus not only for me but for those around me. I selfishly was hoping it would rain yesterday because I knew I had to get laundry done, so wasn't disappointed when it did. The other patients here I'm sure weren't as happy, but the rain was a small victory for my personal productivity.
Paul and Kim flew home this morning so I am officially on my own. They were great to have around, especially after Doug and Eric left. They kept me moving and social at night. I know we'll stay in touch at home and I wish them nothing but the best...I was fortunate to gain their friendship this go round.
Five more nights to go which isn't so bad. I have dinner plans Wednesday night with one of the staff members and will probably plan another one later in the week. There are some new faces here, all very nice, but no one I have connected to yet. I still have plenty to do and hopefully will be resting as much as possible anyway for at least a day or two.
Not much more to report as of now.
More updates to come....
Love,
Tony
I'm not staying at the Klinic tonight. Dr. Jacob does not believe I will have a major reaction...more like the second round than the first. I have her cell phone and I'm minutes from the Klinic if I need help. I also have quite a bit of medication with me so I know I can survive if a reaction occurs. My shot today is double the quantity that I received on Saturday. Her plan is to go under my skin today right over my liver. Dr. Jacob believes I may have a little more pain in my liver, but also believes we may get more of an effect in the liver as well. We're trying to avoid my lower right abdomen where my original rash was as well, even though it is nearly gone. We've been concentrating the past couple of days on my inflammation, red and white blood counts. My IVS have increased considerably, so I spend a little more time in the Klinic in the morning, but they seem to make me feel better.
Kept busy yesterday doing laundry and working all day. The laundry machine alone here runs for almost a hour and a half, so my two loads of laundry took most of the day. I smell good again though which is a bonus not only for me but for those around me. I selfishly was hoping it would rain yesterday because I knew I had to get laundry done, so wasn't disappointed when it did. The other patients here I'm sure weren't as happy, but the rain was a small victory for my personal productivity.
Paul and Kim flew home this morning so I am officially on my own. They were great to have around, especially after Doug and Eric left. They kept me moving and social at night. I know we'll stay in touch at home and I wish them nothing but the best...I was fortunate to gain their friendship this go round.
Five more nights to go which isn't so bad. I have dinner plans Wednesday night with one of the staff members and will probably plan another one later in the week. There are some new faces here, all very nice, but no one I have connected to yet. I still have plenty to do and hopefully will be resting as much as possible anyway for at least a day or two.
Not much more to report as of now.
More updates to come....
Love,
Tony
Sunday, May 17, 2009
Still kicking...
Actually the worst part of yesterday was being concerned that I didn't "suffer" enough Friday night and into Saturday. Based on my conversation with Dr. Friedriekson, I was hoping for a similar reaction to my second dose of the antibody, but the night came and went without drama. Dr. Jacob was not here on Saturday and even though I had a small fever during the night and developed a rash on the left side of my abdomen, I wasn't satisfied with my reaction. The interim doctor told me not to worry, that a second severe reaction was not necessary and I should be happy that I didn't have the side effects.
Because I slept at the Klinic Friday night I started my IVs early the next morning, headed home for a shower and went out to lunch with Kim, Paul and another women, Susan, who is here from Texas with her friend. We had a nice lunch, but by around 2:00 I was ready to go home, which we did so I could rest. I spent most of the afternoon reading and napping. Although I didn't have a major reaction I was and am still very tired. I peeled myself off the couch for dinner last night with Paul, Kim, and Susan and headed home for bed.
This morning Dr. Jacob was here so I had the opportunity to go through the last several days with her. I have many symptoms ranging from night sweats to canker sores that I wanted to run past her based on the treatments. As usual, I won't get into any details, but talking to her about everything makes everything so much better. Based on our conversation we have added some new IVs and new medications. She made it clear that my first two reactions were good and didn't feel like I should have to have the side effects, especially after the first shot. She doesn't think round three or four will be much different. Each symptom we discussed she had an answer for and could detail what was occurring in my body. Everything makes much more sense when speaking to her and certainly gives me a sense of calm. She expects me to be really tired and achy, which I am...but mostly she is pleased with the direction we are going right now. I wanted to make sure she was hitting me with full force and she looked at me and said "Tony you body couldn't handle much more." I told her that was fine, but if I needed to suffer several more days while we did some things not to hold back. She pats me on my knee and says we're doing fine.
I'm ready to get home....tomorrow will be two weeks, but I know the days will go by fast. I need to be here to get the support my body needs. Every morning I receive several e-mails from different people which bring tears to my eyes---those little notes help more than any of you know. I know I am not alone over here...I'm a very lucky man and blessed to have so much support and love from so many people. I'm counting down each day to when I can get Crystal and my kids physically in my arms...won't be long.
More updates to come...
Love,
Tony
Because I slept at the Klinic Friday night I started my IVs early the next morning, headed home for a shower and went out to lunch with Kim, Paul and another women, Susan, who is here from Texas with her friend. We had a nice lunch, but by around 2:00 I was ready to go home, which we did so I could rest. I spent most of the afternoon reading and napping. Although I didn't have a major reaction I was and am still very tired. I peeled myself off the couch for dinner last night with Paul, Kim, and Susan and headed home for bed.
This morning Dr. Jacob was here so I had the opportunity to go through the last several days with her. I have many symptoms ranging from night sweats to canker sores that I wanted to run past her based on the treatments. As usual, I won't get into any details, but talking to her about everything makes everything so much better. Based on our conversation we have added some new IVs and new medications. She made it clear that my first two reactions were good and didn't feel like I should have to have the side effects, especially after the first shot. She doesn't think round three or four will be much different. Each symptom we discussed she had an answer for and could detail what was occurring in my body. Everything makes much more sense when speaking to her and certainly gives me a sense of calm. She expects me to be really tired and achy, which I am...but mostly she is pleased with the direction we are going right now. I wanted to make sure she was hitting me with full force and she looked at me and said "Tony you body couldn't handle much more." I told her that was fine, but if I needed to suffer several more days while we did some things not to hold back. She pats me on my knee and says we're doing fine.
I'm ready to get home....tomorrow will be two weeks, but I know the days will go by fast. I need to be here to get the support my body needs. Every morning I receive several e-mails from different people which bring tears to my eyes---those little notes help more than any of you know. I know I am not alone over here...I'm a very lucky man and blessed to have so much support and love from so many people. I'm counting down each day to when I can get Crystal and my kids physically in my arms...won't be long.
More updates to come...
Love,
Tony
Friday, May 15, 2009
The calm before the storm...
Nine thirty here on a crisp night in Germany. I'm sitting in the Klinic waiting for round two of the antibody to show it's teeth. We expect it will be here somewhere around midnight-2 am, so I'm making the most of my time while I can. It's like I'm waiting for some storm....very peaceful at the moment, but you can see the storm on the radar and know it will be here soon. The goal is to survive the storm tonight (obviously) and get to that sun shining morning tomorrow probably feeling a little beat down, but at the same time will have a sense of relief that round two will be over. Bring it on!
I spoke with Dr. Friedriekson yesterday and he is pleased with the reaction that I had, noting that no reaction would be very bad (meaning the cancer is not responding). He likes the rash, the fevers, the aches, pains, etc. He was able to answer all of my questions about my blood test results and what I can expect the next week. He liked the idea that I was staying in the Klinic for round two, but also doesn't think it will be much different or worse. Not having Dr. Jacob here has been difficult so I found some comfort in talking to a doctor that was very entrenched with my issues. We have other doctors here who are good, but just don't know me or my case like Dr. Jacob and Dr. Friedriekson.
I've done everything in my power today to stay awake even when they gave me my premeds which typically knock me out so I would be nice and tired tonight and maybe sleep. Could back-fire, but seemed logical at the time. My tumor marker results came back and even though these never have been a good indicator for me, we were pleased with the results based on our initial findings when I arrived. They have increased, but not nearly to the levels where we all thought they might go. I want to discuss with Dr. Jacob (she returns Sunday), but that was a positive piece of news today.
I drove Doug to the airport today. He was looking forward to getting home, but I also think he was concerned about leaving me. Doug and I have been friends since grade school and he's a very special part of my life. He has been with me through my best and my worst and has never strayed from my side. We can sit and talk for hours or we can sit comfortably in silence when we are together. This wasn't the setting I think either of us would have envisioned for us twenty or thirty years ago, but we made due with the situation. His willingness to be out here with me says volumes of the type of man and friend he is...I want to thank him publicly for being here with me. His company here meant more to me than he will ever know.
(Momma) Kim (I hope I don't offend her with that) and Paul, from Indiana, are still here and I know I can lean on them while they are still around. Kim is full of energy is has offered to run errands for me, cook for me, get me food, etc. I said it before, but just having someone else here to socialize with to keep you out of a funk is the most important thing. Paul and Kim are a joy to be around so I'm sure I'll spend more time than they might want with me in the next few days. I hoping the weather clears up in the next few days (it's been somewhat rainy / cloudy) so we can do some local cafes, etc. I have plenty to do with work and have reading to do so I'm not searching for things to do at the moment.
On a side note, for those of you needing some entertainment tonight, Farrah Fawcett's documentary is airing tonight in the States. I know this Klinic will be on the documentary since she has spent so much time here...I am keeping my fingers crossed that the documentary is done well and paints a positive picture of the alternatives out there for cancer patients.
Thanks, as always, for all the support from the States. I'm concerned, but positive as ever. Wish me luck tonight!
More updates to come....
Love,
Tony
I spoke with Dr. Friedriekson yesterday and he is pleased with the reaction that I had, noting that no reaction would be very bad (meaning the cancer is not responding). He likes the rash, the fevers, the aches, pains, etc. He was able to answer all of my questions about my blood test results and what I can expect the next week. He liked the idea that I was staying in the Klinic for round two, but also doesn't think it will be much different or worse. Not having Dr. Jacob here has been difficult so I found some comfort in talking to a doctor that was very entrenched with my issues. We have other doctors here who are good, but just don't know me or my case like Dr. Jacob and Dr. Friedriekson.
I've done everything in my power today to stay awake even when they gave me my premeds which typically knock me out so I would be nice and tired tonight and maybe sleep. Could back-fire, but seemed logical at the time. My tumor marker results came back and even though these never have been a good indicator for me, we were pleased with the results based on our initial findings when I arrived. They have increased, but not nearly to the levels where we all thought they might go. I want to discuss with Dr. Jacob (she returns Sunday), but that was a positive piece of news today.
I drove Doug to the airport today. He was looking forward to getting home, but I also think he was concerned about leaving me. Doug and I have been friends since grade school and he's a very special part of my life. He has been with me through my best and my worst and has never strayed from my side. We can sit and talk for hours or we can sit comfortably in silence when we are together. This wasn't the setting I think either of us would have envisioned for us twenty or thirty years ago, but we made due with the situation. His willingness to be out here with me says volumes of the type of man and friend he is...I want to thank him publicly for being here with me. His company here meant more to me than he will ever know.
(Momma) Kim (I hope I don't offend her with that) and Paul, from Indiana, are still here and I know I can lean on them while they are still around. Kim is full of energy is has offered to run errands for me, cook for me, get me food, etc. I said it before, but just having someone else here to socialize with to keep you out of a funk is the most important thing. Paul and Kim are a joy to be around so I'm sure I'll spend more time than they might want with me in the next few days. I hoping the weather clears up in the next few days (it's been somewhat rainy / cloudy) so we can do some local cafes, etc. I have plenty to do with work and have reading to do so I'm not searching for things to do at the moment.
On a side note, for those of you needing some entertainment tonight, Farrah Fawcett's documentary is airing tonight in the States. I know this Klinic will be on the documentary since she has spent so much time here...I am keeping my fingers crossed that the documentary is done well and paints a positive picture of the alternatives out there for cancer patients.
Thanks, as always, for all the support from the States. I'm concerned, but positive as ever. Wish me luck tonight!
More updates to come....
Love,
Tony
Thursday, May 14, 2009
Round One...
Let's hope the reaction I had to the new medication correlates to how well it is effecting the cancer. I was given the injection Tuesday after my premeds with a needle they probably also use to spear small sea fish. The shot is give under my skin near my stomach, on Tuesday we chose my right side for no really good reason. The injection site now looks like I got hit with a softball. Thankfully it is not inflamed, but it is red and starting to itch. We will switch sides when I go for round two tomorrow.
On Tuesday after my shot I felt fine. Doug and I went home ate lunch and relaxed. That evening we went out to a very nice dinner with Paul and Kim, a couple here from Indiana. Paul is getting some treatment here for some conditions not related to cancer. It's been great having them around. We had a great crowd here in October to talk to and I find the time and healing process goes much better when you have some support and friendships here as well with people you can better connect too.
After dinner, Doug and I went to the clinic to make our nightly phone calls followed by our nightly movie back at the apartment. When I went to bed around midnight I was starting to feel tired, but still wasn't feeling any reactions from the shot. Then came 4:00am.
I woke up at four and pretty much felt like I had been hit by a truck. There wasn't to many parts of my body that actually felt good. I was soaking wet from a fever, I could tell I was dehydrated from my muscle aches and thirst, and my chest and legs really hurt. I forced myself out of bed to use the restroom and drink about a gallon of water and tried to go back to sleep. I soon found that was not going to happen. I had some medicine that they gave me in case I started having some reactions, but I took some before I went to bed so didn't really want to double up on it, plus I knew if I could hold out for a few more hours I could get some help at the clinic.
I did doze in and out for a couple of hours until about 6:00, but knew I needed to get to the clinic. I wasn't getting better and I knew I needed some help. I forced a little breakfast down, woke up Doug, and we drove to the clinic. As usual, this place was wonderful. By the time we arrived at 6:30 there was still no one on staff from Dr. Jacob's crew. I stopped a nurse in the hallway and as soon as I gave her my name she dropped everything she was doing and immediately took me to the nurses station and began working on me. Gabby was her name and I couldn't have been more thankful for her that morning. She got me into a bed, started working on my temperature, and made all the necessary phone calls to Dr. Jacob's crew. I'm not sure if it was the treatment or the security of her being around, but even though I still didn't feel good, I did start feeling like I was stabilizing.
By 7:30am some of Dr. Jacob's crew began to arrive and by 8:00am I was making my way back down to the infusion room. I took on plenty of fluids yesterday and was able to get the rest I needed later in the afternoon. By 5:00pm yesterday I started feeling more like myself and declared that the worst was over from round one of four scheduled rounds. Doug and I had a late dinner last night and spent some time back at the clinic making some phone calls since I didn't feel good during the day. Unfortunately sleeping during the day keep us up late last night so getting to sleep last night was difficult.
Today I feeling much better. Besides the rash I have developed from the injection site I feel fairly "normal". I have another day off from the antibody today and we will do round two tomorrow on the other side of my stomach. I'm hoping for two matching shiners by weeks end on either side of my belly. Maybe I'll draw a smile under my belly button and I'll have cheery smiley face with two rosy red cheeks on my lower abdomen looking back at me when I need a smile.
Doug is leaving tomorrow morning, so I have decided to stay at the clinic on the days I am getting my injection. I am the first person here they have given this too, so when I asked if it gets worse as we increase the dosage, there is no way to know. I'll feel better knowing I can get immediate assistance if I need to in the middle of the night. If the reaction is the same I'll be happy....may sound strange, but I would rather feel terrible for twelve hours than not good for ten days. I had the impression before I started that I might feel bad for ten days which I wasn't looking forward to. I don't think any of us know, so I'll take a day at a time. I am surrounded by a great team of nurses and doctors so I'm in good hands here medically. Dr. Jacob has been gone for a couple of days in the States, but returns this weekend and will make my comfort level increase even more. Paul and Kim will be here until Tuesday and I will lean on them as well if I need anything. My plan now is to fly home Sunday, much more of an extended stay than anticipated, but I have no other choice. I have been very relaxed the past three months about my disesase and it's time to get back to doing everything possible to beat this. This trip has been an unwelcomed slap in the face, but one I may have needed to really get the ball rolling in the right direction again.
I know there are a select few very worried about me at home (I won't mention your names), but know that I am doing okay. One week here feels like two or three days. I'm sure I'll have some rough days ahead, but I've been through some tough times before. They smile at me here when I say I'm tough....they know and say I am and I do think that helps when I tell them I that I'm not feeling good. They know I'm not kidding and jump to my needs when I tell them things aren't going well. Paul and Kim will be here until Tuesday so I will have some quality social interaction in Doug's absence and not really feel like I am here "alone." I appreciate all of the continued support and prayers for me and for Crystal and the kids back home.
More updates to come....
Love,
Tony
On Tuesday after my shot I felt fine. Doug and I went home ate lunch and relaxed. That evening we went out to a very nice dinner with Paul and Kim, a couple here from Indiana. Paul is getting some treatment here for some conditions not related to cancer. It's been great having them around. We had a great crowd here in October to talk to and I find the time and healing process goes much better when you have some support and friendships here as well with people you can better connect too.
After dinner, Doug and I went to the clinic to make our nightly phone calls followed by our nightly movie back at the apartment. When I went to bed around midnight I was starting to feel tired, but still wasn't feeling any reactions from the shot. Then came 4:00am.
I woke up at four and pretty much felt like I had been hit by a truck. There wasn't to many parts of my body that actually felt good. I was soaking wet from a fever, I could tell I was dehydrated from my muscle aches and thirst, and my chest and legs really hurt. I forced myself out of bed to use the restroom and drink about a gallon of water and tried to go back to sleep. I soon found that was not going to happen. I had some medicine that they gave me in case I started having some reactions, but I took some before I went to bed so didn't really want to double up on it, plus I knew if I could hold out for a few more hours I could get some help at the clinic.
I did doze in and out for a couple of hours until about 6:00, but knew I needed to get to the clinic. I wasn't getting better and I knew I needed some help. I forced a little breakfast down, woke up Doug, and we drove to the clinic. As usual, this place was wonderful. By the time we arrived at 6:30 there was still no one on staff from Dr. Jacob's crew. I stopped a nurse in the hallway and as soon as I gave her my name she dropped everything she was doing and immediately took me to the nurses station and began working on me. Gabby was her name and I couldn't have been more thankful for her that morning. She got me into a bed, started working on my temperature, and made all the necessary phone calls to Dr. Jacob's crew. I'm not sure if it was the treatment or the security of her being around, but even though I still didn't feel good, I did start feeling like I was stabilizing.
By 7:30am some of Dr. Jacob's crew began to arrive and by 8:00am I was making my way back down to the infusion room. I took on plenty of fluids yesterday and was able to get the rest I needed later in the afternoon. By 5:00pm yesterday I started feeling more like myself and declared that the worst was over from round one of four scheduled rounds. Doug and I had a late dinner last night and spent some time back at the clinic making some phone calls since I didn't feel good during the day. Unfortunately sleeping during the day keep us up late last night so getting to sleep last night was difficult.
Today I feeling much better. Besides the rash I have developed from the injection site I feel fairly "normal". I have another day off from the antibody today and we will do round two tomorrow on the other side of my stomach. I'm hoping for two matching shiners by weeks end on either side of my belly. Maybe I'll draw a smile under my belly button and I'll have cheery smiley face with two rosy red cheeks on my lower abdomen looking back at me when I need a smile.
Doug is leaving tomorrow morning, so I have decided to stay at the clinic on the days I am getting my injection. I am the first person here they have given this too, so when I asked if it gets worse as we increase the dosage, there is no way to know. I'll feel better knowing I can get immediate assistance if I need to in the middle of the night. If the reaction is the same I'll be happy....may sound strange, but I would rather feel terrible for twelve hours than not good for ten days. I had the impression before I started that I might feel bad for ten days which I wasn't looking forward to. I don't think any of us know, so I'll take a day at a time. I am surrounded by a great team of nurses and doctors so I'm in good hands here medically. Dr. Jacob has been gone for a couple of days in the States, but returns this weekend and will make my comfort level increase even more. Paul and Kim will be here until Tuesday and I will lean on them as well if I need anything. My plan now is to fly home Sunday, much more of an extended stay than anticipated, but I have no other choice. I have been very relaxed the past three months about my disesase and it's time to get back to doing everything possible to beat this. This trip has been an unwelcomed slap in the face, but one I may have needed to really get the ball rolling in the right direction again.
I know there are a select few very worried about me at home (I won't mention your names), but know that I am doing okay. One week here feels like two or three days. I'm sure I'll have some rough days ahead, but I've been through some tough times before. They smile at me here when I say I'm tough....they know and say I am and I do think that helps when I tell them I that I'm not feeling good. They know I'm not kidding and jump to my needs when I tell them things aren't going well. Paul and Kim will be here until Tuesday so I will have some quality social interaction in Doug's absence and not really feel like I am here "alone." I appreciate all of the continued support and prayers for me and for Crystal and the kids back home.
More updates to come....
Love,
Tony
Tuesday, May 12, 2009
One week in...
I took the day off yesterday from the blog partially because I didn't have much to report and partially because I was a tad frustrated with my status. I had another really rough day on Sunday with nausea and pretty much just wanted to lay in bed all day. I was able to eat a small lunch which unfortunately didn't stay with me very long, but felt a little better by dinner and was able to keep everything down. Dr. Jacob has been very adamant about me eating and I can hear Crystal's voice in my ear too telling me I have to eat, so I've been sucking it up and eating although my appetite has not joined me yet in Germany. Dr. Jacob told me yesterday she was going to start giving me something to boost my appetite so we'll see what happens.
I didn't get any shots yesterday which has been the best treatment for my symptoms. There is no doubt the new injections were making me sick because I started feeling much better yesterday and am nearly myself again today. I have four weeks until I start the five day cycle of vidaza (the new medication) again. I'll know what to expect and will be at home so maybe it won't be so bad next go round.
On one hand no shots yesterday was good, but on the other hand that also meant it was one more day without the new antibody. Without the details I didn't receive the new antibody which was very disappointed, mainly because each day I lose means one more day here in Germany. I'm at the Klinik now and will start the shots today but Dr. Jacob wants me to stay for the entire ten day cycle plus a day an extra day day or two for observation. I only get four injections in ten days, but the dosage increases as does the risk of side effects. Dr. Jacob is fairly certain I will feel like I have the flu for awhile. As much as I don't want to extend my stay I know being here is the right thing to do. I'm sure if I went home early and had some complications that I would wish I was here. So instead of coming home this Saturday it looks like I'll be here for another week. Not ideal, but not the end of the world. Not seeing Crystal and the kids makes the extended stay the most difficult part, but it's a small sacrifice to pay for the long term potential gain. I've started my premeds this morning (feel like I've had about ten German beers right now) and the first injection will be in my system in several hours. This is the start of a very big day...we'll see how it goes.
Not much other news for now. I told Doug this morning that being here is like the movie Groundhogs Day. Seems like every day is exactly the same. Wake up, treatment, lunch / rest, dinner, movie, and bed. Not big on the excitement meter, but I'm getting the rest I need.
More update to come...
Love,
Tony
I didn't get any shots yesterday which has been the best treatment for my symptoms. There is no doubt the new injections were making me sick because I started feeling much better yesterday and am nearly myself again today. I have four weeks until I start the five day cycle of vidaza (the new medication) again. I'll know what to expect and will be at home so maybe it won't be so bad next go round.
On one hand no shots yesterday was good, but on the other hand that also meant it was one more day without the new antibody. Without the details I didn't receive the new antibody which was very disappointed, mainly because each day I lose means one more day here in Germany. I'm at the Klinik now and will start the shots today but Dr. Jacob wants me to stay for the entire ten day cycle plus a day an extra day day or two for observation. I only get four injections in ten days, but the dosage increases as does the risk of side effects. Dr. Jacob is fairly certain I will feel like I have the flu for awhile. As much as I don't want to extend my stay I know being here is the right thing to do. I'm sure if I went home early and had some complications that I would wish I was here. So instead of coming home this Saturday it looks like I'll be here for another week. Not ideal, but not the end of the world. Not seeing Crystal and the kids makes the extended stay the most difficult part, but it's a small sacrifice to pay for the long term potential gain. I've started my premeds this morning (feel like I've had about ten German beers right now) and the first injection will be in my system in several hours. This is the start of a very big day...we'll see how it goes.
Not much other news for now. I told Doug this morning that being here is like the movie Groundhogs Day. Seems like every day is exactly the same. Wake up, treatment, lunch / rest, dinner, movie, and bed. Not big on the excitement meter, but I'm getting the rest I need.
More update to come...
Love,
Tony
Sunday, May 10, 2009
Happy Mother's Day!
First of all I must quickly wish all the mother's out there reading this a very happy Mother's Day. Hopefully each of you have something enjoyable planned whether you are able to spend time with your children or not. Of course a specific happy mother's day wish goes out to Crystal, my grandmother Feller, my mother-in-law, Donna, and my step-mother, Karen, today. I lost my mother to cancer while I was in college but she remains one of the most influential people in my life. I wish she would have had the same opportunities I have had in her battle with cancer. I know she is wishing me well and holding my hand through my journey though--she would be proud of how far we have come and what we are doing now.
We sent Eric off today, back to Charleston to be with his family. Eric has been a close friend of mine since college and is just a super guy. His humor and compassion on this trip was much needed and I'm not sure I could have made it through this week without him. We don't get to see each other that often so it was really nice to spend some quality time with him even though the circumstances were not what either of us would have liked. Eric is the type of guy that would go to war with me without hesitation and I thank him for being such a good friend over the years. Not to many people are willing or able to sacrifice time away from their families and work to travel to another country with their friends (knowing we aren't going to be doing much). I appreciate the sacrifices he and his family made this past week for me and my family....it truly means more to me than words can express.
The weather continues to be great here so I was hoping yesterday we could get out and actually do some things on Eric's last day, but unfortunately I had one of my worst days I've had here yesterday. After my IVs I tried really hard to join them at a cafe for lunch by the lake, but after about 45 minutes I needed to get home. I felt really sick and pretty much spent the rest of the day in bed. Thankfully Doug is here too, so the two of them were able to get back outside and enjoy the weather and each other's company. I had enough energy to go out to dinner with them last night, but pretty much went to bed when we got back home.
I'm disappointed that we were not able to be more active while Eric was here, but I know he and Doug understand...I'm hoping things turn around soon for me. They are going to give me some nausea medication today to see if that will help, but it is evident I'm better today even without the medication. My last shot of the new medication is today and then I start the second new antibody tomorrow. Dr. Jacob returns tomorrow so I'll get her take on my symptoms as well tomorrow. Could be a variety of things....as long as we are going in the right direction I'll take some down days.
That's all my news for now...more updates to come.
Love,
Tony
We sent Eric off today, back to Charleston to be with his family. Eric has been a close friend of mine since college and is just a super guy. His humor and compassion on this trip was much needed and I'm not sure I could have made it through this week without him. We don't get to see each other that often so it was really nice to spend some quality time with him even though the circumstances were not what either of us would have liked. Eric is the type of guy that would go to war with me without hesitation and I thank him for being such a good friend over the years. Not to many people are willing or able to sacrifice time away from their families and work to travel to another country with their friends (knowing we aren't going to be doing much). I appreciate the sacrifices he and his family made this past week for me and my family....it truly means more to me than words can express.
The weather continues to be great here so I was hoping yesterday we could get out and actually do some things on Eric's last day, but unfortunately I had one of my worst days I've had here yesterday. After my IVs I tried really hard to join them at a cafe for lunch by the lake, but after about 45 minutes I needed to get home. I felt really sick and pretty much spent the rest of the day in bed. Thankfully Doug is here too, so the two of them were able to get back outside and enjoy the weather and each other's company. I had enough energy to go out to dinner with them last night, but pretty much went to bed when we got back home.
I'm disappointed that we were not able to be more active while Eric was here, but I know he and Doug understand...I'm hoping things turn around soon for me. They are going to give me some nausea medication today to see if that will help, but it is evident I'm better today even without the medication. My last shot of the new medication is today and then I start the second new antibody tomorrow. Dr. Jacob returns tomorrow so I'll get her take on my symptoms as well tomorrow. Could be a variety of things....as long as we are going in the right direction I'll take some down days.
That's all my news for now...more updates to come.
Love,
Tony
Saturday, May 9, 2009
Continuing the daily routine...
We made it through another day in Germany…not much news overall. I haven’t really been feeling all that well which has been tough. Feel like I have the flu and not really motivated to do things. Doug and Eric have been troupers, going with the flow even though we have not been doing much.
I had a chance to take them to the Brewhaus yesterday where they ate some authentic German food and beer in an authentic German atmosphere. I think they enjoyed it, but not sure they could repeat their sausage intake today. They now have a better understanding of how the German’s eat, which is quite different than what they are used to. We’ll see what they decide to do today…
My new medication did not come in yesterday so it looks like it may be Monday before I begin. Not the news I was looking for since each day I don’t get the medicine appears to extend my trip an extra day. Dr. Jacob took the day off today so I’ll discuss more details with her when she returns, I assume tomorrow.
Thankfully the weather continues to be bright and sunny which helps the mood. Besides being physically tired, I think this week has been tough on me mentally as well. I’m excited about my new treatment and by no means giving up on this, but seems like it has taken me a few more days to absorb my new news. I’ll be back to normal soon I know….
I receive a newsletter each week from Dr. Moss who writes information concerning cancer treatments, new and old, around the country and thought I would share the one I received before I left for Germany. Crystal and I have always told each other that my goal is to keep my disease stable and hope that something will become available to help push me into remission or a cure. Although there has been a few new drugs, it’s frustrating for me after 4 ½ years and all the funding for cancer research there seems to be little progress. This article echoes some of my sentiments about the war on cancer and the tragedy we face as Americans with the big pharmas, government, and health insurance companies. This article also reminds me of not only how serious my disease is, but also how lucky / successful I have been surviving what I have for such a long time. Everyone following along with me on this journey has played a vital role in helping me through this…I truly believe it’s not just the drugs that have gotten me where I am today. That’s something the big pharmas can’t possible patent!
“Her front-page article on April 24, 2009 marked a turning point, veteran science writer Gina Kolataas described for Times readers a litany of failures in the war on cancer over the past few decades. The overall death rate for cancer, she revealed, when adjusted for the size and age of the population, dropped only 5 percent from 1950 to 2005. "In contrast," she wrote, "the death rate for heart disease dropped 64 percent in that time, and for flu and pneumonia, it fell 58 percent."
"Still," she wrote, "the perception, fed by the medical profession and its marketers, and by popular sentiment, is that cancer can almost always be prevented. If that fails, it can usually be treated, even beaten." I too wrote about this gap between perception and reality in my first book, The Cancer Industry, which came out in 1980. At that time, I was frustrated by the uninformed attitudes towards the war on cancer that I found at America's "newspaper of record." I am certainly encouraged that, 30 years later, they are finally waking up to the fact that things are not going well in the war on cancer.
Kolata focuses on the treatment of metastatic cancers. "With breast cancer, for example, only 20 percent with metastatic disease - cancer that has spread outside the breast, like to bones, brain, lungs or liver - live five years or more, barely changed since the war on cancer began" (Kolata 2009).
The situations with colon, lung and prostate cancer are no better, said Kolata: "With colorectal cancer, only 10 percent with metastatic disease survive five years. That number, too, has hardly changed over the past four decades. The number has long been about 30 percent for metastatic prostate cancer, and in the single digits for lung cancer." These are the grim facts, despite $105 billion spent by NCI on the war on cancer since its inception in December 1971.
Where Does the President Stand?
As is well known, President Barack Obama lost his mother, Ann Soetoro, and his grandmother, Madelyn Dunham, to cancer. He is as well informed about the ravages of this disease as any president in modern times. He has spoken repeatedly about his desire to see cancer cured soon. He has also vowed that, as part of the economic stimulus package, he will increase federal funding for cancer research by a third for the next two years.
I also believe in generously funding cancer research. However, if the decades-long "war on cancer" has taught us anything it is that providing billions of dollars for research is not in itself a sufficient stimulus to real progress. What is far more important is the quality of the treatments being pursued. So far, the National Cancer Institute (NCI) has focused its formidable resources on developing synthetic and patented pharmaceutical agents that can then be sold at astronomical prices. I am thinking here of the so-called 'targeted' drugs, such as bevacizumab (Avastin), which costs about $100,000 per year per patient.
Obama should examine the manner in which promising drugs are selected for development. As a rule, NCI works hand-in-glove with giant pharmaceutical companies (or their surrogates) to research and develop new products. This cozy relationship with big business has left behind some of the most promising treatments that do not fit the mold. These are primarily treatments of natural origin that are not patentable or otherwise profitable to Wall Street. It is a case of "patents over patients" (as I wrote in my New York Times op-ed piece two years ago). This over-emphasis on satisfying the needs of the stock market has fostered a greedy mentality in the cancer field as well. Sometimes, the purpose of performing research has become to generate profits, not to cure cancer in the most expeditious manner possible.
Unless the Obama administration grasps that there is a fundamental problem beyond the lack of research funding it is unlikely to accomplish anything significant in the cancer field. The administration is still in its early days. But I wonder if he is hearing this message from his medical advisors, such Ezekiel Emanuel, MD, brother of his chief of staff, who is a breast cancer oncologist and medical ethicist at NCI.
If I had some time alone with President Obama I would tell him that there are promising treatments for cancer awaiting development, but that have been neglected because they are deemed insufficiently profitable to big companies. The President has stirred the entire world with his promises of change. When it comes to cancer, however, the White House needs to support and promote treatments based solely on their merits, without regard to the profits of Wall Street or the medical profession. That indeed will be change I can believe in.
--Ralph W. Moss, PhD”
More updates to come….
Love,
Tony
I had a chance to take them to the Brewhaus yesterday where they ate some authentic German food and beer in an authentic German atmosphere. I think they enjoyed it, but not sure they could repeat their sausage intake today. They now have a better understanding of how the German’s eat, which is quite different than what they are used to. We’ll see what they decide to do today…
My new medication did not come in yesterday so it looks like it may be Monday before I begin. Not the news I was looking for since each day I don’t get the medicine appears to extend my trip an extra day. Dr. Jacob took the day off today so I’ll discuss more details with her when she returns, I assume tomorrow.
Thankfully the weather continues to be bright and sunny which helps the mood. Besides being physically tired, I think this week has been tough on me mentally as well. I’m excited about my new treatment and by no means giving up on this, but seems like it has taken me a few more days to absorb my new news. I’ll be back to normal soon I know….
I receive a newsletter each week from Dr. Moss who writes information concerning cancer treatments, new and old, around the country and thought I would share the one I received before I left for Germany. Crystal and I have always told each other that my goal is to keep my disease stable and hope that something will become available to help push me into remission or a cure. Although there has been a few new drugs, it’s frustrating for me after 4 ½ years and all the funding for cancer research there seems to be little progress. This article echoes some of my sentiments about the war on cancer and the tragedy we face as Americans with the big pharmas, government, and health insurance companies. This article also reminds me of not only how serious my disease is, but also how lucky / successful I have been surviving what I have for such a long time. Everyone following along with me on this journey has played a vital role in helping me through this…I truly believe it’s not just the drugs that have gotten me where I am today. That’s something the big pharmas can’t possible patent!
“Her front-page article on April 24, 2009 marked a turning point, veteran science writer Gina Kolataas described for Times readers a litany of failures in the war on cancer over the past few decades. The overall death rate for cancer, she revealed, when adjusted for the size and age of the population, dropped only 5 percent from 1950 to 2005. "In contrast," she wrote, "the death rate for heart disease dropped 64 percent in that time, and for flu and pneumonia, it fell 58 percent."
"Still," she wrote, "the perception, fed by the medical profession and its marketers, and by popular sentiment, is that cancer can almost always be prevented. If that fails, it can usually be treated, even beaten." I too wrote about this gap between perception and reality in my first book, The Cancer Industry, which came out in 1980. At that time, I was frustrated by the uninformed attitudes towards the war on cancer that I found at America's "newspaper of record." I am certainly encouraged that, 30 years later, they are finally waking up to the fact that things are not going well in the war on cancer.
Kolata focuses on the treatment of metastatic cancers. "With breast cancer, for example, only 20 percent with metastatic disease - cancer that has spread outside the breast, like to bones, brain, lungs or liver - live five years or more, barely changed since the war on cancer began" (Kolata 2009).
The situations with colon, lung and prostate cancer are no better, said Kolata: "With colorectal cancer, only 10 percent with metastatic disease survive five years. That number, too, has hardly changed over the past four decades. The number has long been about 30 percent for metastatic prostate cancer, and in the single digits for lung cancer." These are the grim facts, despite $105 billion spent by NCI on the war on cancer since its inception in December 1971.
Where Does the President Stand?
As is well known, President Barack Obama lost his mother, Ann Soetoro, and his grandmother, Madelyn Dunham, to cancer. He is as well informed about the ravages of this disease as any president in modern times. He has spoken repeatedly about his desire to see cancer cured soon. He has also vowed that, as part of the economic stimulus package, he will increase federal funding for cancer research by a third for the next two years.
I also believe in generously funding cancer research. However, if the decades-long "war on cancer" has taught us anything it is that providing billions of dollars for research is not in itself a sufficient stimulus to real progress. What is far more important is the quality of the treatments being pursued. So far, the National Cancer Institute (NCI) has focused its formidable resources on developing synthetic and patented pharmaceutical agents that can then be sold at astronomical prices. I am thinking here of the so-called 'targeted' drugs, such as bevacizumab (Avastin), which costs about $100,000 per year per patient.
Obama should examine the manner in which promising drugs are selected for development. As a rule, NCI works hand-in-glove with giant pharmaceutical companies (or their surrogates) to research and develop new products. This cozy relationship with big business has left behind some of the most promising treatments that do not fit the mold. These are primarily treatments of natural origin that are not patentable or otherwise profitable to Wall Street. It is a case of "patents over patients" (as I wrote in my New York Times op-ed piece two years ago). This over-emphasis on satisfying the needs of the stock market has fostered a greedy mentality in the cancer field as well. Sometimes, the purpose of performing research has become to generate profits, not to cure cancer in the most expeditious manner possible.
Unless the Obama administration grasps that there is a fundamental problem beyond the lack of research funding it is unlikely to accomplish anything significant in the cancer field. The administration is still in its early days. But I wonder if he is hearing this message from his medical advisors, such Ezekiel Emanuel, MD, brother of his chief of staff, who is a breast cancer oncologist and medical ethicist at NCI.
If I had some time alone with President Obama I would tell him that there are promising treatments for cancer awaiting development, but that have been neglected because they are deemed insufficiently profitable to big companies. The President has stirred the entire world with his promises of change. When it comes to cancer, however, the White House needs to support and promote treatments based solely on their merits, without regard to the profits of Wall Street or the medical profession. That indeed will be change I can believe in.
--Ralph W. Moss, PhD”
More updates to come….
Love,
Tony
Friday, May 8, 2009
The plan...
Today is Friday and I’m beginning to snap out of the shock from the news. Dr. Jacob continues to tell me that she has to be honest with me, our plan must change, and she feels good about the new treatments. I understand all of this and trust in what she tells me.
The new plan consists of two different substances, one drug and one antibody. One of the most promising attributes of these two medicines is that my body (cancer) has not seen anything like these two. We think the progression I have had is because my tumors have become so resistant to so many drugs due to all the treatment I have had over four + years. Cancer cells are pretty smart and although it seems like you can beat them down for awhile, they figure out what you are doing and make the necessary changes to keep themselves alive and active.
The drug I have already started is a drug that attacks directly against the DNA of the cancer cells not only reducing the size of the cells but helps slow down the progression of new growth. I will be taking this in conjunction with a tri-functional antibody that will be fighting against my cancer cells in three different ways. The technical explanation on how these things work is more than I can offer on this blog, but this is the antibody that Dr. Jacob is really excited about. If you remember, this is the one she wanted me to use when I returned if it became available or if I needed it. As of two weeks ago, it was approved in Germany so it is ready and obviously there is a need to try something new based on my results. Timing could not have been more perfect on this antibody so I take that as a good sign. The US may have this available in ten to twenty years…if we’re lucky. Because my cancer has never seen anything like these two, Dr. Jacob believes my response will be very good.
I started the drug fighting against the DNA Wednesday and will start the tri-functional antibody either today or tomorrow, whenever it arrives from the pharmacy. The DNA drug is five day cycle of daily injections and the tri-functional antibody is five injections taken over ten days. Unfortunately I will have to extend my stay here a few more days so I can get through the entire ten day cycle before I leave. Although the side effects of both of these medicines are minimal, Dr. Jacob believes I will be really tired with flu like symptoms (fever, loss of appetite, chills, etc.). She doesn’t want to send me home until I get through the full cycle and she knows I am okay.
I’m feeling better today than yesterday, but definitely still feeling the effects of the treatment with Dr. Vogl and the new drug. I am really tired feel really run down. I’m sure part of that comes from the time change and the procedure as well as the mental exhaustion I initially had to deal with the first couple of days.
I had my ultrasound today and it didn’t look as bad as Dr. Jacob expected which is good news. We could definitely see some active tumors in my liver, but there continues to be quite a bit of scar tissue and tumor recession as well. Obviously that was a positive outcome. My blood counts and liver enzyme counts are not particularly bad based on the chemoembolisation treatment I went through a few days ago which is also very positive. I continue to thank my body for how well it is doing in light of the attack it is going through. All in all things seem to be looking up again and we’re once again moving forward.
Eric, Doug and I stayed late at the clinic yesterday, had a nice dinner, went home and went to bed. Doug was tired from his trip, I was just tired and Eric needed to catch up on some sleep too. The weather has been nice, so we’re hoping to get out today and sit in the sun and enjoy each other’s company.
Thanks as always, for the well wishes and support and to those of you supporting Crystal at home. This continues to be quite a roller coaster ride.
More updates to come…
Love,
Tony
The new plan consists of two different substances, one drug and one antibody. One of the most promising attributes of these two medicines is that my body (cancer) has not seen anything like these two. We think the progression I have had is because my tumors have become so resistant to so many drugs due to all the treatment I have had over four + years. Cancer cells are pretty smart and although it seems like you can beat them down for awhile, they figure out what you are doing and make the necessary changes to keep themselves alive and active.
The drug I have already started is a drug that attacks directly against the DNA of the cancer cells not only reducing the size of the cells but helps slow down the progression of new growth. I will be taking this in conjunction with a tri-functional antibody that will be fighting against my cancer cells in three different ways. The technical explanation on how these things work is more than I can offer on this blog, but this is the antibody that Dr. Jacob is really excited about. If you remember, this is the one she wanted me to use when I returned if it became available or if I needed it. As of two weeks ago, it was approved in Germany so it is ready and obviously there is a need to try something new based on my results. Timing could not have been more perfect on this antibody so I take that as a good sign. The US may have this available in ten to twenty years…if we’re lucky. Because my cancer has never seen anything like these two, Dr. Jacob believes my response will be very good.
I started the drug fighting against the DNA Wednesday and will start the tri-functional antibody either today or tomorrow, whenever it arrives from the pharmacy. The DNA drug is five day cycle of daily injections and the tri-functional antibody is five injections taken over ten days. Unfortunately I will have to extend my stay here a few more days so I can get through the entire ten day cycle before I leave. Although the side effects of both of these medicines are minimal, Dr. Jacob believes I will be really tired with flu like symptoms (fever, loss of appetite, chills, etc.). She doesn’t want to send me home until I get through the full cycle and she knows I am okay.
I’m feeling better today than yesterday, but definitely still feeling the effects of the treatment with Dr. Vogl and the new drug. I am really tired feel really run down. I’m sure part of that comes from the time change and the procedure as well as the mental exhaustion I initially had to deal with the first couple of days.
I had my ultrasound today and it didn’t look as bad as Dr. Jacob expected which is good news. We could definitely see some active tumors in my liver, but there continues to be quite a bit of scar tissue and tumor recession as well. Obviously that was a positive outcome. My blood counts and liver enzyme counts are not particularly bad based on the chemoembolisation treatment I went through a few days ago which is also very positive. I continue to thank my body for how well it is doing in light of the attack it is going through. All in all things seem to be looking up again and we’re once again moving forward.
Eric, Doug and I stayed late at the clinic yesterday, had a nice dinner, went home and went to bed. Doug was tired from his trip, I was just tired and Eric needed to catch up on some sleep too. The weather has been nice, so we’re hoping to get out today and sit in the sun and enjoy each other’s company.
Thanks as always, for the well wishes and support and to those of you supporting Crystal at home. This continues to be quite a roller coaster ride.
More updates to come…
Love,
Tony
Thursday, May 7, 2009
A long couple of days...
Three very long days have past but settling back into the routine here in Germany. My trip over here was long and included many comedies of errors, but that provided some good laughs for Eric and me. No need to bore anyone with details, we made it here safely without major problems.
Upon arrival we drove three hours up to Frankfurt to have my procedure with Dr. Vogl. The hospital was unusually crowded (finding out later they had an emergency that pushed everything back that day). I felt like I was in a US hospital again, waiting for two hours before we saw a doctor. Not a big deal, but we were exhausted from the trip which made waiting all that harder. By the time my procedure was over I had been awake nearly twenty four hours. Don’t think I need to explain how well we both slept Tuesday night.
Dr. Vogl is not a man of many words and kept to his reputation on Tuesday. Usually I get to talk to him during the procedure, but he was very non-committal to my questioning while I was on the table. I didn’t get a good impression from him as his line of questioning was all about my quality of life and pain symptoms over the last three months. By the time my procedure was over I was feeling pretty good about my status from what he was telling me, but when Eric and I met him after the procedure it was clear that things had gotten worse. He once again, didn’t give me much information, actually telling me to talk to Dr. Jacob the next day for the details. I can write what he said since he only said a few sentences. Your liver had gotten worse, lungs are ok. We have growth in the liver which we gave a good dose of poison to tonight which should help. After I picked my jaw up from the ground I asked him if this seemed strange based on the results I had back in January. He didn’t really answer the question, telling me it was a miracle that I had lived this long based on the disease I was dealing with. I know he didn’t mean it the way it came out, but I was pretty much in a state of shock as we walked out of his office. I knew Dr. Jacob would give me details on Wednesday so I decided not to get worked up before talking to her. Eric and I went back to the hotel, ate dinner and went to bed.
Unfortunately Dr. Jacob confirmed Dr. Vogls assessment on Wednesday.. She spent quite a bit of time with Eric and I discussing the results. Bottom line there is not only new growth in my liver but progressive growth with the established tumors. There is no logical explanation other than my cancer has figured out what we are doing. This is not something she expected based on our results in January, my weight gain, and my physical appearance. She thought I looked better now than I did in January which does not add up to what is going on internally. I know the news was not easy for her to tell me nor was it easy for me to hear, but she told me repeatedly that she would not hide anything from me and needed to tell me exactly what was going on.
After we got through the specifics of my status, she immediately turned to our next plan. She already had a plan in place after talking to Dr. Vogl two times, reviewing my scan and my past chemosensitivity results. As of today we changed medications and will be doing some new treatments to combat what we are seeing. I’ll get into specifics in the next couple of days, there may be some more pieces to the puzzle after we meet with Dr. Friedrieckson tomorrow. As disappointed and sad it was for me to hear these things, I know in all my heart this is where I need to be. As tears ran down my face Dr. Jacob looked at me and told me I needed to stop before I caused her to cry too. She said “Tony, this is not it, I still believe I can help you.” This is why I am here…she cares so much about her patients, her knowledge is unmatched (her ability to come up with such a significant change in plan in a short period of time), and her ability to react so quickly to try to stop the direction we are going is unbelievable. There is no wasting time—thirty minutes after I left her office I was being injected with new drugs and starting down a new path to try to overmatch my cancer.
It has been a long two days, but I’m not giving up hope nor am I losing my determination to win this. I told Crystal on the phone today that we have heard bad news before and survived, this will be no different. There will be some sadness and disappointment that will linger for some time, but we will get through this. For those of you at home around Crystal, make sure you give her a hug for me…you can tell her it’s from me. I’m in great hands with Eric and Doug arrives tomorrow, so I’m doing fine.
There will be plenty more updates to come. I wish I had different news, but it’s not going to change, so time to deal with it and move on to the next chapter. Keep up the prayers…a few extra here and there may not hurt.
Sending my love,
Tony
Upon arrival we drove three hours up to Frankfurt to have my procedure with Dr. Vogl. The hospital was unusually crowded (finding out later they had an emergency that pushed everything back that day). I felt like I was in a US hospital again, waiting for two hours before we saw a doctor. Not a big deal, but we were exhausted from the trip which made waiting all that harder. By the time my procedure was over I had been awake nearly twenty four hours. Don’t think I need to explain how well we both slept Tuesday night.
Dr. Vogl is not a man of many words and kept to his reputation on Tuesday. Usually I get to talk to him during the procedure, but he was very non-committal to my questioning while I was on the table. I didn’t get a good impression from him as his line of questioning was all about my quality of life and pain symptoms over the last three months. By the time my procedure was over I was feeling pretty good about my status from what he was telling me, but when Eric and I met him after the procedure it was clear that things had gotten worse. He once again, didn’t give me much information, actually telling me to talk to Dr. Jacob the next day for the details. I can write what he said since he only said a few sentences. Your liver had gotten worse, lungs are ok. We have growth in the liver which we gave a good dose of poison to tonight which should help. After I picked my jaw up from the ground I asked him if this seemed strange based on the results I had back in January. He didn’t really answer the question, telling me it was a miracle that I had lived this long based on the disease I was dealing with. I know he didn’t mean it the way it came out, but I was pretty much in a state of shock as we walked out of his office. I knew Dr. Jacob would give me details on Wednesday so I decided not to get worked up before talking to her. Eric and I went back to the hotel, ate dinner and went to bed.
Unfortunately Dr. Jacob confirmed Dr. Vogls assessment on Wednesday.. She spent quite a bit of time with Eric and I discussing the results. Bottom line there is not only new growth in my liver but progressive growth with the established tumors. There is no logical explanation other than my cancer has figured out what we are doing. This is not something she expected based on our results in January, my weight gain, and my physical appearance. She thought I looked better now than I did in January which does not add up to what is going on internally. I know the news was not easy for her to tell me nor was it easy for me to hear, but she told me repeatedly that she would not hide anything from me and needed to tell me exactly what was going on.
After we got through the specifics of my status, she immediately turned to our next plan. She already had a plan in place after talking to Dr. Vogl two times, reviewing my scan and my past chemosensitivity results. As of today we changed medications and will be doing some new treatments to combat what we are seeing. I’ll get into specifics in the next couple of days, there may be some more pieces to the puzzle after we meet with Dr. Friedrieckson tomorrow. As disappointed and sad it was for me to hear these things, I know in all my heart this is where I need to be. As tears ran down my face Dr. Jacob looked at me and told me I needed to stop before I caused her to cry too. She said “Tony, this is not it, I still believe I can help you.” This is why I am here…she cares so much about her patients, her knowledge is unmatched (her ability to come up with such a significant change in plan in a short period of time), and her ability to react so quickly to try to stop the direction we are going is unbelievable. There is no wasting time—thirty minutes after I left her office I was being injected with new drugs and starting down a new path to try to overmatch my cancer.
It has been a long two days, but I’m not giving up hope nor am I losing my determination to win this. I told Crystal on the phone today that we have heard bad news before and survived, this will be no different. There will be some sadness and disappointment that will linger for some time, but we will get through this. For those of you at home around Crystal, make sure you give her a hug for me…you can tell her it’s from me. I’m in great hands with Eric and Doug arrives tomorrow, so I’m doing fine.
There will be plenty more updates to come. I wish I had different news, but it’s not going to change, so time to deal with it and move on to the next chapter. Keep up the prayers…a few extra here and there may not hurt.
Sending my love,
Tony
Sunday, May 3, 2009
Off again...
Tomorrow starts the next chapter in my journey with cancer. The bags are packed and all the details are wrapped up, nothing left except for the long flight over to Germany.
To be honest, today was not the best day. Not physically feeling my best coupled with the anxiety of the trip made the day a tough one. I think more than anything I realized once again today that I continue to be in a battle with a very serious disease. There aren't to many moments I "forget" about my cancer, but I stay so busy in life that it is easy to forget what I'm dealing with on a daily basis. Making another trip to Germany brings everything to realization.
Tomorrow I'll wake up and be ready for battle, hope for the best and try to enjoy the trip as much as possible. I'll be making regular updates while I am over there so stay tuned. My procedure and my scan is Tuesday so will know right away how we doing.
More updates to come....
Love,
Tony
To be honest, today was not the best day. Not physically feeling my best coupled with the anxiety of the trip made the day a tough one. I think more than anything I realized once again today that I continue to be in a battle with a very serious disease. There aren't to many moments I "forget" about my cancer, but I stay so busy in life that it is easy to forget what I'm dealing with on a daily basis. Making another trip to Germany brings everything to realization.
Tomorrow I'll wake up and be ready for battle, hope for the best and try to enjoy the trip as much as possible. I'll be making regular updates while I am over there so stay tuned. My procedure and my scan is Tuesday so will know right away how we doing.
More updates to come....
Love,
Tony
Subscribe to:
Posts (Atom)
Posts
