Still not getting the relief I am hoping for with the water retention, but on the positive side the chair we brought up into our living room remains rather comfortable and we have become a fairly decent pair.
I'm noticing that I need a couple of good naps each day which I believe comes from the pain meds, but everything else is really no different or no worse. When the pain comes it is usually in my lower back because it is taking a beating trying to support my back all day and night. I try to get up every couple of hours to stretch but after about ten to fifteen minutes my chair calls me to tell me to come put me legs up.
I have a conference call with Dr. Jacob tomorrow because I'm supposed to start some chemos soon and can not really imagine doing that right now. I need to get her take on this and see if she has an suggestions on how to start reversing this water.
There has been some very discouraging moments for me, but I'm really trying to stay positive. The visitors continue to help and we seem to have just the right amount of guests where I'm not overloaded, but get to have some really good visits.
More updates to come...
Love,
Tony
Wednesday, August 26, 2009
Sunday, August 23, 2009
Status quo...
Through my journey with cancer I have always said that there has been so many positives that have occurred with my diagnosis. I have learned so many things about myself, about others, about how to be a better husband, father, son, brother and friend. I have learned that forgiving yourself and others is best way to get through tough life lessons. And right or wrong I've always felt like learning these lessons help contribute to the healing process. Looking back five years ago I am no where near the same man I was back then. Of course, I'm also not sure how many more "lessons" I have, because I'm ready to be cancer free and start living a "normal" life again (if there is such a thing). None the less I'll take them as they come.
I received a letter from an eight year old little, Clare Kitchin, this week. I hope she doesn't mind me publishing this letter, but I feel like this goes beyond a little girl and a cancer patient her parents know. Her letter reads as follows:
"Dear Tony Feller---I told some friends to pray for you. I really want you to feel better. My mom told me you were having cancer so at my 8th birthday party instead of presents I asked for money for your treatment. There were 10 girls that brought you money and here they are (there was a picture of all the girls)"
Needless to say a very touching card from a little girl with a tremendously big heart. Her father and mother, Greg and Stephanie, should be very proud of her, as am I, (not because it benefited my cause) but because she seems to understand as such a young age that a sacrifice in your life can make a difference in anothers. Giving up presents at age eight isn't easy.
Broken record as far as my health is concerned. I feel good, just still lots of fluid. Still finding it difficult to tell if we are making progress of not. Did some more IVs yesterday and last time I did those the next couple of days seemed to be better. I seem to be a little more tired than usual, which isn't the end of the world but would like to be a little more alert than I am during the day. I've had to stay on top of my pain medicine mainly because of my back pain from not getting up much. Getting up helps and I try to do that as often as possible, but my feet and legs swell up quickly when I'm up to long.
I'm obviously ready for a few more breakthroughs on the water retention, but I'm holding myself together the best I can mentally. More lessons in patience I guess...
More updates to come....
Love,
Tony
I received a letter from an eight year old little, Clare Kitchin, this week. I hope she doesn't mind me publishing this letter, but I feel like this goes beyond a little girl and a cancer patient her parents know. Her letter reads as follows:
"Dear Tony Feller---I told some friends to pray for you. I really want you to feel better. My mom told me you were having cancer so at my 8th birthday party instead of presents I asked for money for your treatment. There were 10 girls that brought you money and here they are (there was a picture of all the girls)"
Needless to say a very touching card from a little girl with a tremendously big heart. Her father and mother, Greg and Stephanie, should be very proud of her, as am I, (not because it benefited my cause) but because she seems to understand as such a young age that a sacrifice in your life can make a difference in anothers. Giving up presents at age eight isn't easy.
Broken record as far as my health is concerned. I feel good, just still lots of fluid. Still finding it difficult to tell if we are making progress of not. Did some more IVs yesterday and last time I did those the next couple of days seemed to be better. I seem to be a little more tired than usual, which isn't the end of the world but would like to be a little more alert than I am during the day. I've had to stay on top of my pain medicine mainly because of my back pain from not getting up much. Getting up helps and I try to do that as often as possible, but my feet and legs swell up quickly when I'm up to long.
I'm obviously ready for a few more breakthroughs on the water retention, but I'm holding myself together the best I can mentally. More lessons in patience I guess...
More updates to come....
Love,
Tony
Friday, August 21, 2009
I haven't disappered....
I can't believe that my last blog was Sunday and I truly apologize for those that have no idea of my status. We are getting so much support I really want to keep people up to date.
Thankfully there is no big news. I'm still working hard to reduce the amount of the fluid from my abdomen down and (knock on wood) I think we are making some progress. My day to day motto hasn't changed so I'm keeping any positive results in perspective until we get to the point where I think we might have this tackled. Mentally though, seeing some progress has really helped. Sleeping at night seems to be getting easier and getting up for my short walks also seem to be getting easier. What little pain I have is under control (I'm not much for pain medicine) with very low doses. I'm sleeping at night with the assistance of an anxiety pill just to sort of relax me before I go to bed. Bed time continues to be the most difficult time for me because if I don't sleep the nights become so long. Recently I have been very blessed with good night's sleep so no complaints. I've started back on most of the protocol from Germany which I think helps all of this as well.
There continues to be a steady stream of visitors that come visit, but not to many that I am feeling overwhelmed. I do get tired during the day so I have got to have one or two short thirty minute naps to get me through the day. My body continues to be very good to me, but I also know I need to give it rest to do its job as well. So overall, I think the report right now is that I am doing well, my spirits remain high and I feel like we are making some progress each day.
On a different note, I can't go on much longer without recognizing my Fraternity brothers and how much they have rallied around me, especially for the fundraising event Sept 10. There are guys coming in from all of the country for this, some of which I haven't seen in over ten years, some of which I never personally knew (because they were older or younger than me when I was in college). I am more than humbled by not only their willingness to come, but also their generosity in the fundraising event itself.
If I've ever talked to you personally about my fundraising events you know I would tell you that these events can be difficult for me. Don't get me wrong, the fundraiser last August may have been one of the best days of my life, but it was because of all the people that came and the fun we had that night. It is an overwhelming feeling having so many people behind you and showing their support whether it's a close friend you keep in touch with, someone you haven't spoken to in years, or someone that I may not even know. My life has been blessed with so many good people, I know without a doubt that I would not be here without all of that support. So for the fundraiser, know my main goal is to have people show up and enjoy a night out with friends---the fundraising part will take care of itself. To my Fraternity brothers....I want to thank each and every one of you whether I see you on Sept 10th or not. What you guys are doing says so much about the type of guys we had in that Theta Chi house and I'm proud to be a part of that group. Looking forward to seeing each of you that are coming.
More updates to come....
Love,
Tony
Thankfully there is no big news. I'm still working hard to reduce the amount of the fluid from my abdomen down and (knock on wood) I think we are making some progress. My day to day motto hasn't changed so I'm keeping any positive results in perspective until we get to the point where I think we might have this tackled. Mentally though, seeing some progress has really helped. Sleeping at night seems to be getting easier and getting up for my short walks also seem to be getting easier. What little pain I have is under control (I'm not much for pain medicine) with very low doses. I'm sleeping at night with the assistance of an anxiety pill just to sort of relax me before I go to bed. Bed time continues to be the most difficult time for me because if I don't sleep the nights become so long. Recently I have been very blessed with good night's sleep so no complaints. I've started back on most of the protocol from Germany which I think helps all of this as well.
There continues to be a steady stream of visitors that come visit, but not to many that I am feeling overwhelmed. I do get tired during the day so I have got to have one or two short thirty minute naps to get me through the day. My body continues to be very good to me, but I also know I need to give it rest to do its job as well. So overall, I think the report right now is that I am doing well, my spirits remain high and I feel like we are making some progress each day.
On a different note, I can't go on much longer without recognizing my Fraternity brothers and how much they have rallied around me, especially for the fundraising event Sept 10. There are guys coming in from all of the country for this, some of which I haven't seen in over ten years, some of which I never personally knew (because they were older or younger than me when I was in college). I am more than humbled by not only their willingness to come, but also their generosity in the fundraising event itself.
If I've ever talked to you personally about my fundraising events you know I would tell you that these events can be difficult for me. Don't get me wrong, the fundraiser last August may have been one of the best days of my life, but it was because of all the people that came and the fun we had that night. It is an overwhelming feeling having so many people behind you and showing their support whether it's a close friend you keep in touch with, someone you haven't spoken to in years, or someone that I may not even know. My life has been blessed with so many good people, I know without a doubt that I would not be here without all of that support. So for the fundraiser, know my main goal is to have people show up and enjoy a night out with friends---the fundraising part will take care of itself. To my Fraternity brothers....I want to thank each and every one of you whether I see you on Sept 10th or not. What you guys are doing says so much about the type of guys we had in that Theta Chi house and I'm proud to be a part of that group. Looking forward to seeing each of you that are coming.
More updates to come....
Love,
Tony
Sunday, August 16, 2009
Very tired, but a quick update regardless...
Whew.....what a weekend. I guess I need to be careful what I ask for because Crystal and I were blessed with non-stop visitors this weekend. I want to thank all of you that stopped by because I had a great time. No doubt I was worn out each evening, but I don't think I "over did it". The house was "alive", we had lots of laughs and overall the company just gave me a boost each day to make the most of and enjoy each day.
Saturday brought some Fraternity brothers that I have not seen for possibly ten to twelve years along with some of my closest high school friends. Many of the "neighborhood gang" was here Friday night to do some partying and play games after some of Crystal's family and my family stopped by in the afternoon. Eric and Doug, who went with me to Germany flew in from Charleston and Phoenix respectively for the day on Saturday along with my good friend Trevor Katz, who flew in from D.C. Today my aunt Kathleen was here and I made it out of the house to celebrate my nephews birthday at Crystal's brothers house. I had a great weekend and had a really hard time getting "down" with everyone around. Thanks to everyone for taking part in the weekend...our recycling bins haven't been this full with bottles and cans in a long time.
The schedule remains busy this week, but the days will be much slower which will allow me to get a little more rest and work done during the day while I visit at night. Looking forward to seeing everyone that has called to come this week!!
From a health standpoint I feel really good. Not sure if it is because of all the people or because my body is doing better, but I do really feel good. My biggest problem continues to be the water retention from my abdomen down. If I could get a little relief from the swelling I would really be doing well. I am on some pain medication, but not much, just enough I think to take the edge off. I was getting a little frustrated yesterday from the swelling because it didn't seem to be getting better, but I saw a few signs today that maybe we are making some progress. A day at a time...
Crystal and I had a conference call with Dr. Jacob and she remains positive with what we are doing and believes that this swelling will subside. Not sure how long it will take, but she thinks the water will eventually work its way out--this is what the removab is supposed to be doing. She wanted me to get back on her protocol as soon as possible since some of things she wants me to do may help. She also talked to the Removab lab and the fluid she sent in from my abdomen was cancer free and from some of the tests she performed my immune system seems to be getting stronger.
Lots of positive news, but again, until I see some results it's going to be difficult for me or the doctors here to believe her (probably a little harder for the latter). So again, I'm taking a day at a time and we'll see what happens.
Overall the report is pretty good. My spirits are up, I feel good with the exception of the swelling, and I'm having a great time with family and friends.
More updates to come...
Love,
Tony
Saturday brought some Fraternity brothers that I have not seen for possibly ten to twelve years along with some of my closest high school friends. Many of the "neighborhood gang" was here Friday night to do some partying and play games after some of Crystal's family and my family stopped by in the afternoon. Eric and Doug, who went with me to Germany flew in from Charleston and Phoenix respectively for the day on Saturday along with my good friend Trevor Katz, who flew in from D.C. Today my aunt Kathleen was here and I made it out of the house to celebrate my nephews birthday at Crystal's brothers house. I had a great weekend and had a really hard time getting "down" with everyone around. Thanks to everyone for taking part in the weekend...our recycling bins haven't been this full with bottles and cans in a long time.
The schedule remains busy this week, but the days will be much slower which will allow me to get a little more rest and work done during the day while I visit at night. Looking forward to seeing everyone that has called to come this week!!
From a health standpoint I feel really good. Not sure if it is because of all the people or because my body is doing better, but I do really feel good. My biggest problem continues to be the water retention from my abdomen down. If I could get a little relief from the swelling I would really be doing well. I am on some pain medication, but not much, just enough I think to take the edge off. I was getting a little frustrated yesterday from the swelling because it didn't seem to be getting better, but I saw a few signs today that maybe we are making some progress. A day at a time...
Crystal and I had a conference call with Dr. Jacob and she remains positive with what we are doing and believes that this swelling will subside. Not sure how long it will take, but she thinks the water will eventually work its way out--this is what the removab is supposed to be doing. She wanted me to get back on her protocol as soon as possible since some of things she wants me to do may help. She also talked to the Removab lab and the fluid she sent in from my abdomen was cancer free and from some of the tests she performed my immune system seems to be getting stronger.
Lots of positive news, but again, until I see some results it's going to be difficult for me or the doctors here to believe her (probably a little harder for the latter). So again, I'm taking a day at a time and we'll see what happens.
Overall the report is pretty good. My spirits are up, I feel good with the exception of the swelling, and I'm having a great time with family and friends.
More updates to come...
Love,
Tony
Friday, August 14, 2009
Home and new status...
Crystal and I apologize for the lack of an update for several days. This has been a physically and emotionally difficult week so we've had many people here for support to help us through.
I'll try to catch everyone up quickly, without being to long winded.
Even though the doctors probably would have sent me home on Tuesday, I told them that I would not leave the hospital in the condition I was in. I was having some new chest pain, everything below my abdomen was extremely swollen so I didn't really feel like going home was a good idea. Once all the tests results came back negative for anything new, I decided to load up on the pain meds to get me through the night and maybe getting home would be the medicine I needed to really pick me up.
I felt a little better Wednesday morning, got up and showered which is always a big accomplishment and decided it was time to go home. Even if more could be done for me, it wasn't going to be done at the IU Med Center, so I told the doctors I was ready to go home. We finalized our hospice program on Wednesday morning which basically is a program that is a middle man between my doctor and myself from a comfort control aspect. We now have a nice new bed in our living room that I sleep in, they send me all my meds so we don't need to go to the pharmacy and they have nurses, counselors, pastors, etc. come in as you need them to make sure me and my family are comfortable, both physically and emotionally.
Honestly, I didn't think this would ever happen. We've been very sad just with the thought of having this type of program, but it also doesn't mean I can't turn this around and soon have that bed out of our living room. The discouraging part is that from Dr. Jacob's standpoint things are going okay (we think we have stabilized the disease), but here in Indiana there is more gloom and doom. They are not sure any of my current symptoms will get better and may even get worse. So I think what Crystal and I are doing are getting prepared for the possibility of this not getting better, but still remaining very, very hopeful that this can be turned around. The treatment in Germany is experimental so I don't think any of us know exactly what is going to happen.
Bottom line is I think if you have read my journal long enough or know me that I will NEVER give up on beating this, but at the same time there has become a reality of the situation where it only makes sense while I am feeling good to make sure any plans that need to be made are made. I am literally taking a day at a time, knowing I will have some good ones and some bad ones and go from there.
Since I have been back from the hospital I have felt really good. I really do think getting home made a big difference. My biggest problem remains my walking. I am so swollen that I can barely walk. I still get winded walking short distances, but my breathing is much better. I am taking some pain meds to keep some of the pain under control and it has been working.
I have decided that what I want the most right now is to open up the house and have people around. If for some reason I don't snap out of this I want to make sure I enjoyed myself as much as I could. My wish thus far has been granted and we have had people around all week, people coming in this weekend, etc. We continue to fill up the schedule which has been great. Something for me to look forward to each day, keep me smiling, and positive.
I'm still on some antibiotics and once those are complete going to continue my Germany protocol and plan to be out there in October feeling much better just as planned.
Not sure how people will take this blog, not an easy one to write. We remain very hopeful, with an attitude that we will never give up, but also don't want to ignore the reality of the current situation. I love you all for the continued support given to me, Crystal, Ashley and William. We are certainly blessed.
More updates to come...
Love,
Tony
I'll try to catch everyone up quickly, without being to long winded.
Even though the doctors probably would have sent me home on Tuesday, I told them that I would not leave the hospital in the condition I was in. I was having some new chest pain, everything below my abdomen was extremely swollen so I didn't really feel like going home was a good idea. Once all the tests results came back negative for anything new, I decided to load up on the pain meds to get me through the night and maybe getting home would be the medicine I needed to really pick me up.
I felt a little better Wednesday morning, got up and showered which is always a big accomplishment and decided it was time to go home. Even if more could be done for me, it wasn't going to be done at the IU Med Center, so I told the doctors I was ready to go home. We finalized our hospice program on Wednesday morning which basically is a program that is a middle man between my doctor and myself from a comfort control aspect. We now have a nice new bed in our living room that I sleep in, they send me all my meds so we don't need to go to the pharmacy and they have nurses, counselors, pastors, etc. come in as you need them to make sure me and my family are comfortable, both physically and emotionally.
Honestly, I didn't think this would ever happen. We've been very sad just with the thought of having this type of program, but it also doesn't mean I can't turn this around and soon have that bed out of our living room. The discouraging part is that from Dr. Jacob's standpoint things are going okay (we think we have stabilized the disease), but here in Indiana there is more gloom and doom. They are not sure any of my current symptoms will get better and may even get worse. So I think what Crystal and I are doing are getting prepared for the possibility of this not getting better, but still remaining very, very hopeful that this can be turned around. The treatment in Germany is experimental so I don't think any of us know exactly what is going to happen.
Bottom line is I think if you have read my journal long enough or know me that I will NEVER give up on beating this, but at the same time there has become a reality of the situation where it only makes sense while I am feeling good to make sure any plans that need to be made are made. I am literally taking a day at a time, knowing I will have some good ones and some bad ones and go from there.
Since I have been back from the hospital I have felt really good. I really do think getting home made a big difference. My biggest problem remains my walking. I am so swollen that I can barely walk. I still get winded walking short distances, but my breathing is much better. I am taking some pain meds to keep some of the pain under control and it has been working.
I have decided that what I want the most right now is to open up the house and have people around. If for some reason I don't snap out of this I want to make sure I enjoyed myself as much as I could. My wish thus far has been granted and we have had people around all week, people coming in this weekend, etc. We continue to fill up the schedule which has been great. Something for me to look forward to each day, keep me smiling, and positive.
I'm still on some antibiotics and once those are complete going to continue my Germany protocol and plan to be out there in October feeling much better just as planned.
Not sure how people will take this blog, not an easy one to write. We remain very hopeful, with an attitude that we will never give up, but also don't want to ignore the reality of the current situation. I love you all for the continued support given to me, Crystal, Ashley and William. We are certainly blessed.
More updates to come...
Love,
Tony
Monday, August 10, 2009
Racking up the points at the Marriott....
If I have to be at the hospital, I guess I'm fortunate that I'm in the new hospital rooms at the IU Med Center. I've asked if I receive Marriott points to stay here, but unfortunately I don't. Although it is nice, I also say that it's really sad that we need to build these types of structures in the US for our cancer patients. I know we can't help everyone, but the more I am here the more my eyes are opened to how tunnel visioned we are here with our cancer care and how sad it is we don't have cures for so many cancers. Tonight is not the time or place for me to get started, I just find it discouraging.
So today cancer took away my ability to see my grandmother's funeral and to go to the annual school ice cream social to see who Ashley's teacher will be this school year. Tomorrow cancer will take away my ability to watch my daughter get on the bus to start her year as a second grader. If cancer doesn't know me by now, I may get discouraged or disappointed by these things, but in the big scheme of things I'm not going to let it set me back. I'm not going to let the disappointment outweigh my ability to stay strong and fight back to get back on my feet and start swinging again. We've had some tough days lately both physically and emotionally. Crystal and I spent some time today talking and although both of us are a little more scared and discouraged these days, we have a lot of fight left in us.
The biggest problem right now is my swelling. My legs and ankles are huge and I'm not really sure why we can't get some of that to start going away. My energy levels and coloring is better, but my urine is still really dark which is a concern and the pain in my right side has returned.....I'm hoping we don't need a "do over" on the ERCP procedure I had on Saturday. They want to try to send me home tomorrow, but I'll have to wait until the team of "white coats" come in tomorrow earlier than rooster crows. I'm off to bed...another restful night in the Marriott.
More updates to come....
Love,
Tony
So today cancer took away my ability to see my grandmother's funeral and to go to the annual school ice cream social to see who Ashley's teacher will be this school year. Tomorrow cancer will take away my ability to watch my daughter get on the bus to start her year as a second grader. If cancer doesn't know me by now, I may get discouraged or disappointed by these things, but in the big scheme of things I'm not going to let it set me back. I'm not going to let the disappointment outweigh my ability to stay strong and fight back to get back on my feet and start swinging again. We've had some tough days lately both physically and emotionally. Crystal and I spent some time today talking and although both of us are a little more scared and discouraged these days, we have a lot of fight left in us.
The biggest problem right now is my swelling. My legs and ankles are huge and I'm not really sure why we can't get some of that to start going away. My energy levels and coloring is better, but my urine is still really dark which is a concern and the pain in my right side has returned.....I'm hoping we don't need a "do over" on the ERCP procedure I had on Saturday. They want to try to send me home tomorrow, but I'll have to wait until the team of "white coats" come in tomorrow earlier than rooster crows. I'm off to bed...another restful night in the Marriott.
More updates to come....
Love,
Tony
Sunday, August 9, 2009
No witty words, just an update
Today is Sunday...it is weird how you forget what day it is when you sit in a hospital room all day. No exciting news. Tony slept all day yesterday from bring put under for his stent replacement. That went well. Today he woke up with some back pain which he has not experienced since before we went to Germany. He got the blood transfusion to boost his hemoglobin and iron levels. His bilirubin count has gone down to 10 which the lower the number the better. His skin is returning to a more normal color. His eyes are still yellow, but that will improve as the days go on as well.
They have given him some Lasix (don't know if I spelled that right?) to help flush out all of the fluid that he is retaining. His legs and feet (and other body parts I won't mention) are very enlarged due to fluid retention. The down side to lasix is he has to get up to go to the bathroom every 30 minutes or so.
The blood cultures all showed different kinds of bacteria in his bloodstream, so he is still on 3 antibiotics. He has not had a fever, but they are closely monitoring his heart rate (which has run a tad high at times) and his blood pressure (which has run a tad low). They are looking at at least Tuesday they think before he gets out of here.
He cant be released until his WBC is normal, no longer showing signs of infection, remains fever free once off the IV antibiotics, and has normal HR and blood pressure. Ashley will be sad that he will not see her get on the bus for her first day of school Tuesday, but she will understand.
Our kids are kind of resilient like that. They came to the hospital today to see Tony. Even with 6 bags of IV's going and a blood transfusion going on...not one single question. This is our kids "norm". I really believe that has been such a part of why they are such sensitive kids. Tony has taught them many things and their sensitivity is my absolute favorite.
Tony really wanted to go to his grandmother's funeral, but that was just not possible. His sister, Tonya, and her three kids have moved back to Indiana. She came today as well to see him. It is good to have her back as she is another support person for him emotionally!!
That's it for now....time to run..more posts tomorrow.
Love to you all, (thanks Lisa for watching the kids today and to Sherri Kraft for dinner Monday:)
Crystal
They have given him some Lasix (don't know if I spelled that right?) to help flush out all of the fluid that he is retaining. His legs and feet (and other body parts I won't mention) are very enlarged due to fluid retention. The down side to lasix is he has to get up to go to the bathroom every 30 minutes or so.
The blood cultures all showed different kinds of bacteria in his bloodstream, so he is still on 3 antibiotics. He has not had a fever, but they are closely monitoring his heart rate (which has run a tad high at times) and his blood pressure (which has run a tad low). They are looking at at least Tuesday they think before he gets out of here.
He cant be released until his WBC is normal, no longer showing signs of infection, remains fever free once off the IV antibiotics, and has normal HR and blood pressure. Ashley will be sad that he will not see her get on the bus for her first day of school Tuesday, but she will understand.
Our kids are kind of resilient like that. They came to the hospital today to see Tony. Even with 6 bags of IV's going and a blood transfusion going on...not one single question. This is our kids "norm". I really believe that has been such a part of why they are such sensitive kids. Tony has taught them many things and their sensitivity is my absolute favorite.
Tony really wanted to go to his grandmother's funeral, but that was just not possible. His sister, Tonya, and her three kids have moved back to Indiana. She came today as well to see him. It is good to have her back as she is another support person for him emotionally!!
That's it for now....time to run..more posts tomorrow.
Love to you all, (thanks Lisa for watching the kids today and to Sherri Kraft for dinner Monday:)
Crystal
Saturday, August 8, 2009
Finding out the facts...
Quick update to everyone~
Tony was up about every 1.5 hours throughout the night....welcome to "sleeping" in the hospital right? He had another breathing episode @ 3:30 this morning which lasted about 20 minutes. It's hard to sleep here because of all the nurses have to check on him throughout the night...but it is comforting to be here so closely monitored.
His tests from yesterday indicated his stent was clogged. The ERCP doctor came in at 8am and said he would be ready soon. The good news about being here on a Saturday is that there really is not the back up of patients that you run into during the week. So by 9am they came and took him down.
The nurse just told me that it went well (10:30am) and that they replaced the stent and got rid of tiny stones they found stuck in the very tiny biliary vessels. These stones would also add to the jaundice and discomfort. He should be up to room in about a half hour.
The IU med center has a very nice recently opened addition to its cancer center. Our room is very nice and much more comfortable then we usually get here. The nurses and residents have been great. A special thanks to the best nurse in the world, Kellie Dann, who helps out Tony's oncologist here. She played a critical role in getting Tony into a room ASAP. She is a special angel we have here on Earth.
Tony is still hoping that he can go to his grandmother's viewing tomorrow from 4-8pm. I am not sure if he will be released by then or if it is even a good idea that he go. We know he has an infection that he is now on antibiotics for, and his immune system is highly compromised at the moment. Personally, I have told him to shoot for making the funeral Monday morning. He is stubborn (but so am I) so we shall see????
Our kids were well taken care of yesterday (thanks to all the great dance team moms) and treated to dinner and ice cream by the Gerigs. Tony's dad and stepmother took them back to Richmond with them. My plan is to get them Sunday morning after mass. We have decided that they will not be going to the calling. It was a tough decision, but one that we feel is the right one at the given time.
Thanks for all of your well wishes and kind messages. Tony laughed at me last night because this hospital has blocked the use of facebook from its internet. He said I may experience withdrawals (and he was kind of right...ha ha). I am able to get facebook messages on my phone, so thank you to all of you have have sent us messages.
That's all for now. We will update more as we know more information.
Love,
Crystal
Tony was up about every 1.5 hours throughout the night....welcome to "sleeping" in the hospital right? He had another breathing episode @ 3:30 this morning which lasted about 20 minutes. It's hard to sleep here because of all the nurses have to check on him throughout the night...but it is comforting to be here so closely monitored.
His tests from yesterday indicated his stent was clogged. The ERCP doctor came in at 8am and said he would be ready soon. The good news about being here on a Saturday is that there really is not the back up of patients that you run into during the week. So by 9am they came and took him down.
The nurse just told me that it went well (10:30am) and that they replaced the stent and got rid of tiny stones they found stuck in the very tiny biliary vessels. These stones would also add to the jaundice and discomfort. He should be up to room in about a half hour.
The IU med center has a very nice recently opened addition to its cancer center. Our room is very nice and much more comfortable then we usually get here. The nurses and residents have been great. A special thanks to the best nurse in the world, Kellie Dann, who helps out Tony's oncologist here. She played a critical role in getting Tony into a room ASAP. She is a special angel we have here on Earth.
Tony is still hoping that he can go to his grandmother's viewing tomorrow from 4-8pm. I am not sure if he will be released by then or if it is even a good idea that he go. We know he has an infection that he is now on antibiotics for, and his immune system is highly compromised at the moment. Personally, I have told him to shoot for making the funeral Monday morning. He is stubborn (but so am I) so we shall see????
Our kids were well taken care of yesterday (thanks to all the great dance team moms) and treated to dinner and ice cream by the Gerigs. Tony's dad and stepmother took them back to Richmond with them. My plan is to get them Sunday morning after mass. We have decided that they will not be going to the calling. It was a tough decision, but one that we feel is the right one at the given time.
Thanks for all of your well wishes and kind messages. Tony laughed at me last night because this hospital has blocked the use of facebook from its internet. He said I may experience withdrawals (and he was kind of right...ha ha). I am able to get facebook messages on my phone, so thank you to all of you have have sent us messages.
That's all for now. We will update more as we know more information.
Love,
Crystal
Friday, August 7, 2009
Two hellava days...
Thursday started with a phone call from my father letting me know my dear Grandmother had past away. One of those unexpected moments although her death was not completely expected either. She had a fairly severe heart attack a couple of days ago, but was doing well and we all thought she might "snap" out of it. She is and was an incredible woman who lived a very happy, loving, quality life---I will miss her dearly as will so many others. Her and my Grandfather prayed for me daily and she wanted so badly to see her grandson get well. Now she'll just have to watch from a different place.
Besides that emotional hit, I actually felt a little better Thursday. I was able to get up in the morning, shower, and eat some breakfast (big accomplishment, huh). Even though I probably could have forced myself to go into the office for a few hours I really didn't want to push it and knew I could have a productive work day from home, which I did. There were no naps, I ate well and generally I started to feel like maybe I was turning this thing around.
Last night I decided to go the store and get some energy / protein drinks since I ran out of the ones from Germany and I obviously want to keep my huge volume of muscle mass. I may have cancer, but I don't want to give up my huge biceps either. Unfortunately the trip outside caused a pretty major downward spiral. When I got home I started having some shortness of breath and muscle spasms in my chest that were causing some severe pain. Crystal needed to help me up the stairs to our bed and we both pretty much knew at this point that something was not right.
Somehow I made it through the night if you can call it that. Neither of us slept very well and by 6:00am I was having severe chills along with a fever. As usual, Crystal went to work. She was immediately on e-mail, sending Dr. Jacob a message telling her what was going on. She replied instantly and basically said get to a hospital to draw blood, you have an infection that needs to be taken care of immediately. By 9:30 at was at the IU Med Center and by 10:30 was admitted. As much as I didn't want to stay, I knew we had to figure this out and the only way to do it was to stay and get all the tests ran I needed.
Bottom line is I do have some sort of infection, we'll know for sure tomorrow when the blood cultures come back, but they have put me on some generic antibiotics just to get me started. At the same time, we think the stent we put in my biliary ducts may be clogged already so we are pretty sure I'll be doing another ERCP procedure tomorrow to unclog my ducts.
None of these things are serious if we get them taken care of, but I've pretty much turned a nice color of yellow again in the last two days and obviously any infection needs to be taken care.
I've had several tests today and will do some more tomorrow, so we'll know more as we get through the next day or two.
My spirits are up, I know we have many positive things occurring, just need to take care of these first. Crystal is with me and the kids are with my dad and Karen so everyone is doing okay. We appreciate everyone's well wishes...another bump in the road.
More updates to come....
Love,
Tony
Besides that emotional hit, I actually felt a little better Thursday. I was able to get up in the morning, shower, and eat some breakfast (big accomplishment, huh). Even though I probably could have forced myself to go into the office for a few hours I really didn't want to push it and knew I could have a productive work day from home, which I did. There were no naps, I ate well and generally I started to feel like maybe I was turning this thing around.
Last night I decided to go the store and get some energy / protein drinks since I ran out of the ones from Germany and I obviously want to keep my huge volume of muscle mass. I may have cancer, but I don't want to give up my huge biceps either. Unfortunately the trip outside caused a pretty major downward spiral. When I got home I started having some shortness of breath and muscle spasms in my chest that were causing some severe pain. Crystal needed to help me up the stairs to our bed and we both pretty much knew at this point that something was not right.
Somehow I made it through the night if you can call it that. Neither of us slept very well and by 6:00am I was having severe chills along with a fever. As usual, Crystal went to work. She was immediately on e-mail, sending Dr. Jacob a message telling her what was going on. She replied instantly and basically said get to a hospital to draw blood, you have an infection that needs to be taken care of immediately. By 9:30 at was at the IU Med Center and by 10:30 was admitted. As much as I didn't want to stay, I knew we had to figure this out and the only way to do it was to stay and get all the tests ran I needed.
Bottom line is I do have some sort of infection, we'll know for sure tomorrow when the blood cultures come back, but they have put me on some generic antibiotics just to get me started. At the same time, we think the stent we put in my biliary ducts may be clogged already so we are pretty sure I'll be doing another ERCP procedure tomorrow to unclog my ducts.
None of these things are serious if we get them taken care of, but I've pretty much turned a nice color of yellow again in the last two days and obviously any infection needs to be taken care.
I've had several tests today and will do some more tomorrow, so we'll know more as we get through the next day or two.
My spirits are up, I know we have many positive things occurring, just need to take care of these first. Crystal is with me and the kids are with my dad and Karen so everyone is doing okay. We appreciate everyone's well wishes...another bump in the road.
More updates to come....
Love,
Tony
Wednesday, August 5, 2009
Slow going...
I am physically spent. Sunday I tried to do what I could, but spent the majority of the day on the couch. Monday I went into work for several hours to try to catch up on some loose ends. Tuesday came and I hit the wall. My goal was to go to my naturopaths and receive some much needed IVs, but I couldn't do it. Coming up with enough energy to walk to the couch to the restroom was about all I had in me. I slept off and on, and was able to get some work done and stay as focused as possible. Last night my pain came back so I didn't sleep great and woke up feeling fairly crummy again. My angel, Aunt Betty, drove up to the house today to sit with me and make sure I was keeping fluids in me, eating, etc. I know my body is really struggling right now...I can't imagine what my liver enzymes and bilirubin counts are, but from history alone I can probably guess they are very high.
Tonight I feel a little better, but wouldn't want to be running any marathons at the moment. My abdomen is very swollen and full and I get winded easily when walking around the house. All of this will pass I know....I'm trying not to get depressed, knowing this was probably going to be part of the drill for the first week or so.
Good news is my swollen legs and feet are getting much better. Wearing shoes shouldn't be as big of an issue. We continue to have positives and we'll hold onto those as we get through this not so fun period.
The outpouring of support remains steady and is much appreciated. Thanks to the Carr's for the unexpected meal on Tuesday, the Norris's for mowing our lawn today, the Pruitt's for helping out with our kids today, Donna Turner for running all over town today getting my pain meds, of course Aunt Betty for driving here and making dinner and Aunt Carol for helping us out tomorrow. These "little" things mean more to us than any of you know.
I wish I had a more uplifting update....this will get better. More updates to come...
Love,
Tony
Tonight I feel a little better, but wouldn't want to be running any marathons at the moment. My abdomen is very swollen and full and I get winded easily when walking around the house. All of this will pass I know....I'm trying not to get depressed, knowing this was probably going to be part of the drill for the first week or so.
Good news is my swollen legs and feet are getting much better. Wearing shoes shouldn't be as big of an issue. We continue to have positives and we'll hold onto those as we get through this not so fun period.
The outpouring of support remains steady and is much appreciated. Thanks to the Carr's for the unexpected meal on Tuesday, the Norris's for mowing our lawn today, the Pruitt's for helping out with our kids today, Donna Turner for running all over town today getting my pain meds, of course Aunt Betty for driving here and making dinner and Aunt Carol for helping us out tomorrow. These "little" things mean more to us than any of you know.
I wish I had a more uplifting update....this will get better. More updates to come...
Love,
Tony
Sunday, August 2, 2009
Back home in Indiana...
I'm sure most of you know by now, but we have made it home. Long, long, long trip home, but somehow we survived and are now at home resting and trying to slowly put our "life after Germany # 4 into place". As always there are so many things to do when we get home, but we are getting better at resting and prioritizing what needs to be done when we get home. I'm sure it will take a week or so until we fully get back into our everyday routines.
I'm not going to complain to much about the trip home because it wasn't the airlines fault. There is a time to get upset and a time to be thankful for everything they try to do. Unfortunately my circumstances of needing some medication and rest wasn't ideal, but they accommodated us as well as I could expect. Waking up at 6:00am Germany time on Friday and arriving home at around midnight (Germany time) on Sat night / Sunday morning makes for a long couple of days. If you would have told me I would have been able to survive a 42 hour long trip home before we left I would have told you there is no way. There were a couple of times where I thought I would have to ask for some "special assistance" in the airport, but Crystal hung in there with me and we slowly did what we needed to do. I don't consider myself "handicapped" and become pretty stubborn when it comes to asking for wheelchairs or those terrible carts that beep so loudly the entire airport can hear you coming.
Obviously we were not awake for 42 hours straight either. We both were able to doze off here and there on the flight to Atlanta, in the airport Friday night, and we slept about four hours in a hotel Friday night. Never "solid" sleep but don't want to make the impression that we never slept.
We woke up early Saturday morning, rented a car and decided we were going to drive home since the earliest flight was 9 pm that night. After a quick breakfast Crystal talked me into taking a quick shower thinking it may make me feel better. As I was in the shower she decided to make one last phone call to Delta to see if there were any flights that we could get on earlier. Long story short, she talked to a very nice gentleman, gave him our story and soon he had us on a direct flight to Indy leaving at 2:30 pm. He said we needed to get to the airport early since we didn't have seat assignments, but did confirm that we would be on that flight. Long story short, we did get on that flight and landed in Indy at 4:30, without having to drive. The stay at the airport was fairly brutal, I didn't have all my medication and was having some pain, but made it through the morning and afternoon. We made it....
As usual, nothing better than seeing the kids when we arrived in Indianapolis. They were a little wound up last night, but we talked them into going to bed with us a little early by allowing them to fall asleep in our bed. I think we all slept fairly well...I slept, but was almost to overtired to sleep. My pain returned by mid morning, so I got up and started to get the medicines I needed in my system to combat my symptoms. As of tonight everything seems to be stable....I was ready for some issues and had everything addressed with Dr. Jacob before I left. I've had a couple of naps today, but also trying to do as much as I can. My feet and legs are almost so swollen to put shoes and socks on and I know I'll be going through a tired spell this week, but I feel like by the end of the week I'll be turning this around.
I feel like I'm completely rambling so am going to end this for now. Bottom line is we are home and readjusting again. Time will tell how "successful" this trip was, but I think we all believe it was a positive one. Thanks to everyone once again for all of the support while we were gone....this has been a tremendous team effort from so many people....one I couldn't do alone. Somehow, someway I still believe this will someday be behind us.
More updates to come....
Love,
Tony
I'm not going to complain to much about the trip home because it wasn't the airlines fault. There is a time to get upset and a time to be thankful for everything they try to do. Unfortunately my circumstances of needing some medication and rest wasn't ideal, but they accommodated us as well as I could expect. Waking up at 6:00am Germany time on Friday and arriving home at around midnight (Germany time) on Sat night / Sunday morning makes for a long couple of days. If you would have told me I would have been able to survive a 42 hour long trip home before we left I would have told you there is no way. There were a couple of times where I thought I would have to ask for some "special assistance" in the airport, but Crystal hung in there with me and we slowly did what we needed to do. I don't consider myself "handicapped" and become pretty stubborn when it comes to asking for wheelchairs or those terrible carts that beep so loudly the entire airport can hear you coming.
Obviously we were not awake for 42 hours straight either. We both were able to doze off here and there on the flight to Atlanta, in the airport Friday night, and we slept about four hours in a hotel Friday night. Never "solid" sleep but don't want to make the impression that we never slept.
We woke up early Saturday morning, rented a car and decided we were going to drive home since the earliest flight was 9 pm that night. After a quick breakfast Crystal talked me into taking a quick shower thinking it may make me feel better. As I was in the shower she decided to make one last phone call to Delta to see if there were any flights that we could get on earlier. Long story short, she talked to a very nice gentleman, gave him our story and soon he had us on a direct flight to Indy leaving at 2:30 pm. He said we needed to get to the airport early since we didn't have seat assignments, but did confirm that we would be on that flight. Long story short, we did get on that flight and landed in Indy at 4:30, without having to drive. The stay at the airport was fairly brutal, I didn't have all my medication and was having some pain, but made it through the morning and afternoon. We made it....
As usual, nothing better than seeing the kids when we arrived in Indianapolis. They were a little wound up last night, but we talked them into going to bed with us a little early by allowing them to fall asleep in our bed. I think we all slept fairly well...I slept, but was almost to overtired to sleep. My pain returned by mid morning, so I got up and started to get the medicines I needed in my system to combat my symptoms. As of tonight everything seems to be stable....I was ready for some issues and had everything addressed with Dr. Jacob before I left. I've had a couple of naps today, but also trying to do as much as I can. My feet and legs are almost so swollen to put shoes and socks on and I know I'll be going through a tired spell this week, but I feel like by the end of the week I'll be turning this around.
I feel like I'm completely rambling so am going to end this for now. Bottom line is we are home and readjusting again. Time will tell how "successful" this trip was, but I think we all believe it was a positive one. Thanks to everyone once again for all of the support while we were gone....this has been a tremendous team effort from so many people....one I couldn't do alone. Somehow, someway I still believe this will someday be behind us.
More updates to come....
Love,
Tony
Saturday, August 1, 2009
You Gotta Be Kidding Me!
Got to Atlanta fine..they delay us for 4.5 hours then say the flight to Indy cancelled. We waited in line for 1.5 hours they could not get us to Indy, Cincy, Louisville, Dayton, or Chicago that night or Sat. morning. They have us flying in at 11:45pm Sat. night....no way!!!! I went ape a**!
They put us up at the Marriott...I have slept 5 hours in the last 26 and now I am getting ready to rent a car and drive from Atl. to Indy. Ashley was in tears in the phone wanting to see us. I am not missing another night putting my kids to bed!
I will get my luggage too---they say I can't----they don't know me! I will get my luggage. It has Tony's meds! HIs feet are so swollen he can't get his shoes on. More later.
They put us up at the Marriott...I have slept 5 hours in the last 26 and now I am getting ready to rent a car and drive from Atl. to Indy. Ashley was in tears in the phone wanting to see us. I am not missing another night putting my kids to bed!
I will get my luggage too---they say I can't----they don't know me! I will get my luggage. It has Tony's meds! HIs feet are so swollen he can't get his shoes on. More later.
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