Today we wrapped things up at the clinic with Dr. Jacob and Dr. Fredrickson. Nothing new to report on their end. They did a conference call with Tony's oncologist from the IU Medical Center just to make sure everyone was on the same page. We also wanted her to explain the new medication (Removab) to him so he got a better feel for what is suppose to do. Dr. Helft has always hung in there with us...he is a wonderful man. Whatever helps Tony he is willing to do if he can.
Dr. Jacob want Tony to return in October...I told her if he missed his daughter's birthday again this year because of being in Germany, we would have one very sad little girl. Tony had to miss our anniversary, my birthday and Ashley's last year because of treatment over here. She said early October would be fine...as long as he is home before Oct. 21st we will be fine!
We left the town we have come to know over the past year today and headed to Munich where we are staying in a hotel near the airport tonight. We have to be at the airport around 8 am and did not want to deal with the drive in the morning....8 am can't come soon enough for the both of us!! We are looking forward to hugging all kids all night tomorrow night!
That's all for now...we are going to bed now....see some of you soon. By the way, we want to send an extra special thank you to the fundraising committee who continued to meet while we were gone. They continue to collect and seek out donations for the fundraiser in September and we couldn't be here doing this without all of their efforts!!!!! Thank you Brenda, Gail, Anne, MeMe and all of those who have donated items for the raffle baskets.
Love,
Crystal
Thursday, July 30, 2009
Wednesday, July 29, 2009
I'm back....
This has been a rough trip for both Crystal and I from both a physical and mental standpoint, that quite honestly have not felt much up to writing. Crystal is doing a great job trying to keep everyone updated through this journal and via e-mails (and facebook of course). Today was much like the others where we opened the infusion room and left seven hours later as the lights were being turned out. I'm definitely getting my money's worth on this trip with all the medications she is giving me.
I had to wear a chemo pump home last night which we thought would be completed by today, but no such luck. Looks like I have another sleeping buddy for one more night. Don't really like the third party, but this is a low dose and Dr. Jacob wants it to run slowly as well. I feel fairly good overall, as Crystal mentioned yesterday, I am starting to regain some of my energy. We have a feeling that will dip again in the next few days, but soon will recover since we can say with almost certainty that the Removab antibody is the cause of all of this. I can't lie either and say I haven't been a little anxious about drawing the fluid from my abdomen and getting another dose of Removab and chemo. Getting those two things behind me has probably helped my mood as well yesterday and today.
I look like the Pillsbury Dough boy, and I know the steroids have played a huge effect on my emotions here, but besides the full bowel (sorry if TMI), we think we have answers for everything. I'll be going home with lots of medications to help keep me stable and will keep my fingers crossed that the conference call we have scheduled tomorrow with my doctors in the States actually takes place. Just like Dr. Jacob here, I know Dr. Helft and Dr. Teverbaugh are very busy, but we have it on the calendar so we'll see. Whatever happens will happen, but one of my big goals this trip was to make sure we all knew and understood what I am doing and why I am doing it---along with ways to combat side effects.
One more full day of treatment then back home. As usual, I miss the kids but always a little hesitant to leave without feeling 100%. Crystal has hung in there with me, I know this wasn't the trip we were hoping for from a "getting out" perspective and unfortunately I slept so much and was a tad moody early on that we didn't get to have the laughs I was hoping to have. We're going to try to get out to SeaFest tonight which is yet another festival they have here. Seems like they have had about three festivals since we have been here. One of the staff members at the Klinic has a sail boat so we are going to try to avoid the crowds by being on the boat. One day we'll get over here for a little more enjoyment, but hoping tonight can sort of end our trip on doing something besides dinner.
We know we have lots of people praying, rooting, and thinking about us at home and we do appreciate it more than you know. The power of a little note goes a long way when times are tough.
More updates to come...
Love,
Tony
I had to wear a chemo pump home last night which we thought would be completed by today, but no such luck. Looks like I have another sleeping buddy for one more night. Don't really like the third party, but this is a low dose and Dr. Jacob wants it to run slowly as well. I feel fairly good overall, as Crystal mentioned yesterday, I am starting to regain some of my energy. We have a feeling that will dip again in the next few days, but soon will recover since we can say with almost certainty that the Removab antibody is the cause of all of this. I can't lie either and say I haven't been a little anxious about drawing the fluid from my abdomen and getting another dose of Removab and chemo. Getting those two things behind me has probably helped my mood as well yesterday and today.
I look like the Pillsbury Dough boy, and I know the steroids have played a huge effect on my emotions here, but besides the full bowel (sorry if TMI), we think we have answers for everything. I'll be going home with lots of medications to help keep me stable and will keep my fingers crossed that the conference call we have scheduled tomorrow with my doctors in the States actually takes place. Just like Dr. Jacob here, I know Dr. Helft and Dr. Teverbaugh are very busy, but we have it on the calendar so we'll see. Whatever happens will happen, but one of my big goals this trip was to make sure we all knew and understood what I am doing and why I am doing it---along with ways to combat side effects.
One more full day of treatment then back home. As usual, I miss the kids but always a little hesitant to leave without feeling 100%. Crystal has hung in there with me, I know this wasn't the trip we were hoping for from a "getting out" perspective and unfortunately I slept so much and was a tad moody early on that we didn't get to have the laughs I was hoping to have. We're going to try to get out to SeaFest tonight which is yet another festival they have here. Seems like they have had about three festivals since we have been here. One of the staff members at the Klinic has a sail boat so we are going to try to avoid the crowds by being on the boat. One day we'll get over here for a little more enjoyment, but hoping tonight can sort of end our trip on doing something besides dinner.
We know we have lots of people praying, rooting, and thinking about us at home and we do appreciate it more than you know. The power of a little note goes a long way when times are tough.
More updates to come...
Love,
Tony
Tuesday, July 28, 2009
Nothing Exciting....
I do not have much to report today. We spent our usual 7.5 hours in the clinic for his infusions. He made it all day without taking a nap though...he only took an hour nap before dinner. At the clinic Dr. Jacob did another ultrasound to see if he had "cleared out" enough to see more of the liver necrosis and to find a spot to aspirate some of the fluid. Much to our surprise, he is still "full". This is so odd because the meds she gave him over the past two days have really helped in that department.
He is able to eat a full meal now without getting so uncomfortable, so she thinks this is a good sign that the liver size has gone down a little bit. Also, he blood counts have come back exactly how they she predicted they would based off of the recent treatments. He seems to have a slight increase in his energy level(again blood work would agree with this, but the counts are still elevated).
I have learned one thing for sure. It's not a good idea for one to watch their loved one get a needle inserted 3 inches below their belly button and watch fluid being drawn out. For those of you that know me and have read the blogs from this winter, you know I am not a fan of needles. Strangely, I love those medical shows that show surgeries being performed! I think I am to close to this situation though, so a little woozy is a good way to describe my feeling at that moment. She was only able to extract a large syringe full of fluid-not enough to give him any relief, but enough to have it tested to make sure there are no tumor cells in it....she is confident based on the color of it that it will not.
She was glad to "get in' with the needle in the area that she did because she was able to put the Removab directly in like she wanted (versus through the IV like the first time). Ok, how good are you...let's see....who knows what the Removab is going to do?????
Yup, cause more swelling internally over the next two days. She gave a high dose of cortisone though today to try to keep it down as much as possible. She explained to us like this, "Tony I have to do something while you are here to work against the tumors." With no Prof. Vogl this trip she needed to get 2 treatment of this in. She thought the pros outweighed the cons.
He is also on a 24 hour mitomycin (sp?) pump tonight---he has to sleep hooked up to it all night. It is a type of chemo that his chemo sensitivity test still shows his tumor cells are receptive to. The doctor in the US would not put him on it as he did not agree with the use of this medication. Dr. Jacob does not expect any ill side effects from the low dose chemo, but perhaps some pain and fever from the Removab. I am suppose to give him a shot for the pain if needed tonight (did i mention me/loved ones/and needles before?)
So far so good tonight. We enjoyed a nice dinner with our friends Adam and Julie who we met here in October (from Florida). No pain, no fever, so we hope that remains. I will write more tomorrow.....thanks for all of the positive messages you have been sending. We love hearing from you all. They bring a smile to our face just when we need it the most.
Love, Crystal
He is able to eat a full meal now without getting so uncomfortable, so she thinks this is a good sign that the liver size has gone down a little bit. Also, he blood counts have come back exactly how they she predicted they would based off of the recent treatments. He seems to have a slight increase in his energy level(again blood work would agree with this, but the counts are still elevated).
I have learned one thing for sure. It's not a good idea for one to watch their loved one get a needle inserted 3 inches below their belly button and watch fluid being drawn out. For those of you that know me and have read the blogs from this winter, you know I am not a fan of needles. Strangely, I love those medical shows that show surgeries being performed! I think I am to close to this situation though, so a little woozy is a good way to describe my feeling at that moment. She was only able to extract a large syringe full of fluid-not enough to give him any relief, but enough to have it tested to make sure there are no tumor cells in it....she is confident based on the color of it that it will not.
She was glad to "get in' with the needle in the area that she did because she was able to put the Removab directly in like she wanted (versus through the IV like the first time). Ok, how good are you...let's see....who knows what the Removab is going to do?????
Yup, cause more swelling internally over the next two days. She gave a high dose of cortisone though today to try to keep it down as much as possible. She explained to us like this, "Tony I have to do something while you are here to work against the tumors." With no Prof. Vogl this trip she needed to get 2 treatment of this in. She thought the pros outweighed the cons.
He is also on a 24 hour mitomycin (sp?) pump tonight---he has to sleep hooked up to it all night. It is a type of chemo that his chemo sensitivity test still shows his tumor cells are receptive to. The doctor in the US would not put him on it as he did not agree with the use of this medication. Dr. Jacob does not expect any ill side effects from the low dose chemo, but perhaps some pain and fever from the Removab. I am suppose to give him a shot for the pain if needed tonight (did i mention me/loved ones/and needles before?)
So far so good tonight. We enjoyed a nice dinner with our friends Adam and Julie who we met here in October (from Florida). No pain, no fever, so we hope that remains. I will write more tomorrow.....thanks for all of the positive messages you have been sending. We love hearing from you all. They bring a smile to our face just when we need it the most.
Love, Crystal
Monday, July 27, 2009
Waiting for some action.....
I never thought I would want Tony to spend a night "on the toilet" so to speak, but that is what we were both hoping for last night. Two medications were given to him late in the afternoon yesterday to help "get rid" of all of the stuff inside. To look at Tony's stomach right now one would think he is about 5-6 months pregnant! Maybe all of these ultrasounds have been wrong about the pregnancy thing huh??? So stomach is very distended an looks like it could "pop" at any given moment. He is still eating well, but he gets uncomfortable after a meal because it adds to the feeling of fullness he has 24/7.
Me, being the medical doctor that I am spent time last night on the net typing in different combinations of his symptoms on medical sights.....then Bingo!! I got it!!! I found exactly what I was looking for....why is all of this happening if it is not tumor growth??? By the way, Prof. Vogl talked to Dr. Jacob this morning and confirmed with her that since the treatment in May (his chemoembalisation + the new Removab antibody) there has been no new progression in his liver or lungs (insert a drop to the knees moment and a "praise God" chant).
There is something I found called "portal hypertension". Tony has most of the symptoms (black tarry stool---which he had initially upon arriving, enlarged spleen, enlarged liver, ascites---which are an accumulation of fluid in the liver or abdomen, low platelet count,etc., etc.). As to not offend Dr. Jacob, I asked her if this could be a possibility. She said "yes, absolutely"...you will have to look up portal hypertension because it is too difficult to explain on here, sorry.
Other issues going on: The Removab is doing what we want it to do, but almost too fast. The necrosis is happening so fast that Tony's body is not able to keep up with getting rid of the fluid and dead cells that the necrosis causes from the tumor sites. Tomorrow she is going to try to aspirate the fluid again from his abdomen and from the largest necrosis area in the liver to provide some relief. She has been giving him cortisone for the last 4 days (steroid) which in turn causes ........you guessed it-fluid retention!! She has to do this though in order to keep the liver swelling to as minimal as possible.
Next issue: she needs to give him the Removab again before we leave because we can not get the medication anyplace else. This time her plan is to give it to him directly in the liver (instead of via IV as he did last Tuesday) when she is in there attempting to aspirate the necrosis fluid.
She wanted to give him as much as she could while we are here this time, but we all voted against the Vidaza shots (the 4 shots that make him very sick to his stomach) for this week because these are something we can bring back with us (thanks to Carol Haney our neighbor who is a nurse!). We also voted against extending our trip a week in order to see Prof. Vogl to get another chemoembalisation. At this point she feels it would be way to much for his body to take on at once. Remember the Prof. Vogl treatment aids in the necrosis in the liver because it kills the tumors internally. She wants him back in October to do Prof. Vogl first and then to see her.
She confirmed his iron level is now back to normal, but will continue to give a little intravenously this week. No problems breathing since Friday. She definitely thinks that is all related to the extreme pressure internally on the organs and how the are pushing up on his lungs.
If Tony is not able to "get rid" of some of the issues causing his swelling tonight by the same methods that were attempted yesterday, she wants to assist in this via meds in an IV that are sure to do the trick but without depleting him of minerals. You know me, that is not okay with me.....because if he is not "emptied" by tomorrow she wont' be able to do the aspiration of the fluid in the necrosis area and in the intestinal area (because the stool literally blocks her view on an ultrasound and she has to see to insert the needle) and she would not be able to inject the Removab directly.
So. I am waiting now to ask her to just give him the med via IV now so we don't screw around and waste another day!!!! That's all I have for now....sorry I'm a little long winded, but women typically are more detailed then men, ha ha ha.
I will post more info as I know, until then pray for "bathroom success" here in the motherland:)
Love,
Crystal
Me, being the medical doctor that I am spent time last night on the net typing in different combinations of his symptoms on medical sights.....then Bingo!! I got it!!! I found exactly what I was looking for....why is all of this happening if it is not tumor growth??? By the way, Prof. Vogl talked to Dr. Jacob this morning and confirmed with her that since the treatment in May (his chemoembalisation + the new Removab antibody) there has been no new progression in his liver or lungs (insert a drop to the knees moment and a "praise God" chant).
There is something I found called "portal hypertension". Tony has most of the symptoms (black tarry stool---which he had initially upon arriving, enlarged spleen, enlarged liver, ascites---which are an accumulation of fluid in the liver or abdomen, low platelet count,etc., etc.). As to not offend Dr. Jacob, I asked her if this could be a possibility. She said "yes, absolutely"...you will have to look up portal hypertension because it is too difficult to explain on here, sorry.
Other issues going on: The Removab is doing what we want it to do, but almost too fast. The necrosis is happening so fast that Tony's body is not able to keep up with getting rid of the fluid and dead cells that the necrosis causes from the tumor sites. Tomorrow she is going to try to aspirate the fluid again from his abdomen and from the largest necrosis area in the liver to provide some relief. She has been giving him cortisone for the last 4 days (steroid) which in turn causes ........you guessed it-fluid retention!! She has to do this though in order to keep the liver swelling to as minimal as possible.
Next issue: she needs to give him the Removab again before we leave because we can not get the medication anyplace else. This time her plan is to give it to him directly in the liver (instead of via IV as he did last Tuesday) when she is in there attempting to aspirate the necrosis fluid.
She wanted to give him as much as she could while we are here this time, but we all voted against the Vidaza shots (the 4 shots that make him very sick to his stomach) for this week because these are something we can bring back with us (thanks to Carol Haney our neighbor who is a nurse!). We also voted against extending our trip a week in order to see Prof. Vogl to get another chemoembalisation. At this point she feels it would be way to much for his body to take on at once. Remember the Prof. Vogl treatment aids in the necrosis in the liver because it kills the tumors internally. She wants him back in October to do Prof. Vogl first and then to see her.
She confirmed his iron level is now back to normal, but will continue to give a little intravenously this week. No problems breathing since Friday. She definitely thinks that is all related to the extreme pressure internally on the organs and how the are pushing up on his lungs.
If Tony is not able to "get rid" of some of the issues causing his swelling tonight by the same methods that were attempted yesterday, she wants to assist in this via meds in an IV that are sure to do the trick but without depleting him of minerals. You know me, that is not okay with me.....because if he is not "emptied" by tomorrow she wont' be able to do the aspiration of the fluid in the necrosis area and in the intestinal area (because the stool literally blocks her view on an ultrasound and she has to see to insert the needle) and she would not be able to inject the Removab directly.
So. I am waiting now to ask her to just give him the med via IV now so we don't screw around and waste another day!!!! That's all I have for now....sorry I'm a little long winded, but women typically are more detailed then men, ha ha ha.
I will post more info as I know, until then pray for "bathroom success" here in the motherland:)
Love,
Crystal
Saturday, July 25, 2009
The blood work is in....
Hi all, it's me again, the fill-in writer. Tony would love to be the one posting these, but he is still very tired. He slept great last night. No difficulties breathing. He actually woke up at 6am and was wide eyed and ready to go. After yesterday's events, we literally closed the clinic down. He slept until 5 pm after all of the Valium they gave him. I woke him up, we called the kids, got a bite to eat and back to the hotel it was. I know he was hoping for time for us to go out and see some things, but he is just to tired to take that on right now.
The fill-in doctor (Dr. Jacob returns tomorrow) went over some of his labs with us today. The way the Removab (antibody med) works is that it for sure spikes a person's liver enzymes. A few days after the doc should see them start to go back down. This is what happened to Tony, but the enzymes are still not within the normal range (this explains part of the fatigue). Then there is the bilirubin. The higher the level, the worse you feel and the more tired you get. His was 4.8 2 days ago and now is at 3.4 (normal is up to 1.3). Again, this adds to the fatigue. The biggest factor in fatigue is with his iron levels. For a man, a normal iron level is at least 75 (based on what i found with my google medical degree on the internet). Tony's was at 1.5 two days ago and is now at 12.7. The fill-in doctor said normal range was 11.6-30, so I will ask Dr. J about this tomorrow.
They gave him an antibiotic yesterday in case there is any infection internally going on. He does not have a fever though. But his white blood level is going up a little, indicating that the body is trying to fight something off---uhhh, I think his body is trying to fight off the cancer, but i'm no doctor. However, his CRP count (which is an infection marker) has also gone up a little from 2 days ago.
Okay, okay, so what does that mean in a way we can all understand? It means that he is literally tired enough to fall asleep ON THE PHONE while talking to our kids during a 5 minute conversation. It means he sees the initial scene of a movie and asks me "how was it?" when he wakes up, it means "go get the car" so he only has to walk 50 yards to get in, it means he sleeps all night and after doing a few hours of work on the computer he is ready to sleep again.
It means as he sleeps, I cry wishing I could do something to make this all go away for him......
One of us will update more tomorrow as new information is learned.....until then.
Hugs to you all,
Crystal
The fill-in doctor (Dr. Jacob returns tomorrow) went over some of his labs with us today. The way the Removab (antibody med) works is that it for sure spikes a person's liver enzymes. A few days after the doc should see them start to go back down. This is what happened to Tony, but the enzymes are still not within the normal range (this explains part of the fatigue). Then there is the bilirubin. The higher the level, the worse you feel and the more tired you get. His was 4.8 2 days ago and now is at 3.4 (normal is up to 1.3). Again, this adds to the fatigue. The biggest factor in fatigue is with his iron levels. For a man, a normal iron level is at least 75 (based on what i found with my google medical degree on the internet). Tony's was at 1.5 two days ago and is now at 12.7. The fill-in doctor said normal range was 11.6-30, so I will ask Dr. J about this tomorrow.
They gave him an antibiotic yesterday in case there is any infection internally going on. He does not have a fever though. But his white blood level is going up a little, indicating that the body is trying to fight something off---uhhh, I think his body is trying to fight off the cancer, but i'm no doctor. However, his CRP count (which is an infection marker) has also gone up a little from 2 days ago.
Okay, okay, so what does that mean in a way we can all understand? It means that he is literally tired enough to fall asleep ON THE PHONE while talking to our kids during a 5 minute conversation. It means he sees the initial scene of a movie and asks me "how was it?" when he wakes up, it means "go get the car" so he only has to walk 50 yards to get in, it means he sleeps all night and after doing a few hours of work on the computer he is ready to sleep again.
It means as he sleeps, I cry wishing I could do something to make this all go away for him......
One of us will update more tomorrow as new information is learned.....until then.
Hugs to you all,
Crystal
Friday, July 24, 2009
oh crap..he spoke to soon!
Tony updated below about 2 hours ago, but a big turn of events has happened. He had another episode of not being able to breathe again---full force. I think it even took back the "fill-in doctor" and nurses here. He said he was cold again...and then within a minute the convulsion like shivering begins. Once the shivering begins the deep gasps for air begin...and everything goes south. I know it doesn't help when we tell him to try and breathe slowly----he can't which is why he is gasping!! But, when he is gasping he gets very tense as I am sure it it very scary for him and the panic level rises in his face. Today the doctor had to give him 2 shots of Valium in his IV, put the oxygen on him, lay him down covered in heated wraps, and then a few minutes later he was out...asleep. The nurse said he has to get to a clinic or hospital if this is still going on at home...and no matter what he says get him there even if he tells me "no".
They thought the fish oil was causing the reaction, but he whispered "no" because he had it in May. So, they are not sure what the hell is making this happen. They all agree it is not a lung issue???? I am going to have to go with that for now. Having "no" answers to why is much scarier then knowing-even if the reason isn't always good.....I am off to sit by his bed because the nurses and doctors are done with him and said I could go in..Bye!
Crystal
They thought the fish oil was causing the reaction, but he whispered "no" because he had it in May. So, they are not sure what the hell is making this happen. They all agree it is not a lung issue???? I am going to have to go with that for now. Having "no" answers to why is much scarier then knowing-even if the reason isn't always good.....I am off to sit by his bed because the nurses and doctors are done with him and said I could go in..Bye!
Crystal
Two out of four isn't bad...
I'm back, but I want to thank Crystal for doing a fantastic job on the journal while I was "out". There is no possible way of explaining how tired I was the first two days and then Wednesday got a little dicey late in the day and into the night. I really didn't have the energy to write.
I think Monday and Tuesday I slept about 18 of the 24 hours in the day. The other six were trying to keep up with work, talk to Crystal and make some phone calls. I have had very few good nights sleep over the past two months and the flight over wasn't exactly restful so Monday night was like a dream day / night of sleep, one my body needed desperately. Unfortunately had some side effects from the Removab on Tuesday night, but slept okay. Wasn't as bad as my recent nights in the US, but not one without several hours of restlessness during the night. Crystal explained my Wednesday night which was fairly miserable, but in typical Dr. Jacob fashion gave me what I needed last night to sleep great again.
I'm not big on steroids, mainly because my muscles get so big, but they help my inflammation so much that 98% of my symptoms subside. I was also given a pill to open up my lungs a little which also did the job. Sounds like a small request, but sleeping on my side, with the ability to breath and through my nose even was a little slice of heaven last night. So here four days, two really good ones as far as rest and two not so good ones.
Dr. Jacob has some business to do today at the new Klinic so she won't be in today. Probably won't get to much information from the "fill in doctor", but there is not much I'm concerned about this morning. Dr. Jacob thought some of my liver enzymes would start to come down today and should start feeling better overall. As of 10:30 am, she seems to be right. Long day ahead of us, but I'll take it for now. We were going to start my Vidaza shots today, but think we are either going to skip them altogether or wait a few days to see how I'm bouncing back. She knows I can handle a heavy dose of medication, but also wants my body to stabilize a little before we continue our attack. I'm not arguing with her and am actually a little relieved. I want to be here for serious therapy, but this trip as I have said before is one where I needed to get back on track and give my body a chance to heal. We did so much therapy in May that I still don't think my body has had a chance to rebuild from the attack.
Both Crystal and I are still a tad confused on if all of what we are seeing is really positive, positive, or just so-so everything is stable news. I get the feeling that what the Removab has done is positive news. I know her and Dr. Friedrieckson have both been concerned about having to much necrosis at one time and I think Dr. Jacob is a little taken back at the amount I have. I'm not so sure she sees it as bad news, I get the perception she is a little more in shock. We have effected quite a bit of my tumor load, still have many more to tackle, but from my perspective I'm pretty happy. We'll get the news in the next few days on how this new dose of removab is effecting the cells as well.
I am so happy to be here. My excitement level was at its lowest going into this trip, but I really, really needed some relief and another boost of confidence. Once again, Dr. Jacob makes sense of everything, understands my needs, and explains everything in as much detail as we need. As much as I love her, I try to keep my anger level at bay wishing that I didn't have to travel so far to get these types of answers. More new faces this time from Asia, Australia, England, and US prove that I'm not the only one that feels the same way.
I want to thank everyone for the e-mails to Crystal and I. I want to thank those taking care of our children for doing just that----they are having a great time and helps ease the stress for us to be gone. Lastly I want to thank those on the fundraising committee for keeping the ball rolling while we are gone and for those helping out with our outside yard work---another huge stress reliever for us. Crystal and I are trying to enjoy the time together as much as possible, being together without many of our other everyday stresses has been good for both if us.
More updates to come,
Love,
Tony
I think Monday and Tuesday I slept about 18 of the 24 hours in the day. The other six were trying to keep up with work, talk to Crystal and make some phone calls. I have had very few good nights sleep over the past two months and the flight over wasn't exactly restful so Monday night was like a dream day / night of sleep, one my body needed desperately. Unfortunately had some side effects from the Removab on Tuesday night, but slept okay. Wasn't as bad as my recent nights in the US, but not one without several hours of restlessness during the night. Crystal explained my Wednesday night which was fairly miserable, but in typical Dr. Jacob fashion gave me what I needed last night to sleep great again.
I'm not big on steroids, mainly because my muscles get so big, but they help my inflammation so much that 98% of my symptoms subside. I was also given a pill to open up my lungs a little which also did the job. Sounds like a small request, but sleeping on my side, with the ability to breath and through my nose even was a little slice of heaven last night. So here four days, two really good ones as far as rest and two not so good ones.
Dr. Jacob has some business to do today at the new Klinic so she won't be in today. Probably won't get to much information from the "fill in doctor", but there is not much I'm concerned about this morning. Dr. Jacob thought some of my liver enzymes would start to come down today and should start feeling better overall. As of 10:30 am, she seems to be right. Long day ahead of us, but I'll take it for now. We were going to start my Vidaza shots today, but think we are either going to skip them altogether or wait a few days to see how I'm bouncing back. She knows I can handle a heavy dose of medication, but also wants my body to stabilize a little before we continue our attack. I'm not arguing with her and am actually a little relieved. I want to be here for serious therapy, but this trip as I have said before is one where I needed to get back on track and give my body a chance to heal. We did so much therapy in May that I still don't think my body has had a chance to rebuild from the attack.
Both Crystal and I are still a tad confused on if all of what we are seeing is really positive, positive, or just so-so everything is stable news. I get the feeling that what the Removab has done is positive news. I know her and Dr. Friedrieckson have both been concerned about having to much necrosis at one time and I think Dr. Jacob is a little taken back at the amount I have. I'm not so sure she sees it as bad news, I get the perception she is a little more in shock. We have effected quite a bit of my tumor load, still have many more to tackle, but from my perspective I'm pretty happy. We'll get the news in the next few days on how this new dose of removab is effecting the cells as well.
I am so happy to be here. My excitement level was at its lowest going into this trip, but I really, really needed some relief and another boost of confidence. Once again, Dr. Jacob makes sense of everything, understands my needs, and explains everything in as much detail as we need. As much as I love her, I try to keep my anger level at bay wishing that I didn't have to travel so far to get these types of answers. More new faces this time from Asia, Australia, England, and US prove that I'm not the only one that feels the same way.
I want to thank everyone for the e-mails to Crystal and I. I want to thank those taking care of our children for doing just that----they are having a great time and helps ease the stress for us to be gone. Lastly I want to thank those on the fundraising committee for keeping the ball rolling while we are gone and for those helping out with our outside yard work---another huge stress reliever for us. Crystal and I are trying to enjoy the time together as much as possible, being together without many of our other everyday stresses has been good for both if us.
More updates to come,
Love,
Tony
Thursday, July 23, 2009
"Oh what a night..."
Yes this is a popular party song, but we were not partying in our hotel room at all! I would like to think of myself as a person who reacts calmly in a stressful situation, but I do not give myself an "A" based on last night. We were able to go down by the water and enjoy a nice dinner and returned to the room around 8:30, watched a movie, then Tony fell asleep. I am not able to go to bed as early as he is for some reason and last night was no different. Around midnight I decided to try to fall asleep and as soon as I laid down I could hear Tony struggling to breathe. I could tell he was not in a deep sleep, so I asked him if everything was alright.
He sat up and said he was cold, began shivering, and his skin was clammy. Then he began to literally gasp for air, taking quick short breaths. To put it bluntly, "oh shit" was what was going through my mind. I layered him in blankets to try to stop the shivering and got out Dr. Jacob's cell phone number. About 5 minutes of this had been going on at this point. Note to self here: learn how to dial out of a foreign hotel room prior to staying the night.
I could not get the phone to work...I went to the front desk (which is not the same as the front desk in US hotels) where I knew nobody would be at that hour of night, and tried that phone. Again, no luck....and the German message that shouted out of the phone was of no help either! I grabbed some tourist brouchers (again in German) to see how many numbers people use in telephone numbers here...10....I needed to use 10 numbers-got it!
I go back to the room and figure out which 10 numbers i needed, but Dr. Jacob was not answering...so I email (because I know she has a blackberry)....no response. Now it has been 10 minutes of gasping. Just when I was ready to put him in the car and drive to the klinik to see any nurse on duty, he began to breath better and return to a normal state.
It all happened again around 4:30am, but only for 5 minutes or so. Dr. Jacob had returned my email a few hours later, but I had already turned off the computer. Today (Thursday) we arrived at the klinik early and they were ready for him.. Dr. J wanted to do an ultrasound of his lungs because she feared there may be fluid in his lungs. She was pleased that she did not see any fluid in his lungs. What has happened is this: Tony's liver we knew was already enlarged from all of the necrosis of the tumors PRIOR to us getting here this time. With the Removab treatment he did on Tuesday it has added additional inflammation to his liver and now his spleen (fyi: Tony has 2 spleens, which are taking up abdominal space).
The way she described it is that between the tumor spots in his lungs, enlarged spleen, enlarged liver, and lets not forget all of the gas and other stuff he has sitting in his GI tract, he has a tremendous amount of pressure on his lungs. This pressure is the cause of this shortness of breath. She thinks the necrosis will get bigger in the liver since he did the tx on Tuesday, so if it does, she will aspirate the fluid. She is not sure why the gas and back up is happening----no blockages noted and Tony's "dates" with the bathroom have all been fine.
So that's it..there you have it...add it to the twists and turns on this roller coaster ride we are on!!! That's all to report for now. His blood work is due back here today, so we will know that info later. He will NOT be going to the Frankfurt hospital to see the gentle hands (not really) of Prof. Vogl this trip. For one he is not in Germany right now and Dr. Jacob also feels like it would be too much for this short of a trip. More updates to come.....
Love,
Crystal
He sat up and said he was cold, began shivering, and his skin was clammy. Then he began to literally gasp for air, taking quick short breaths. To put it bluntly, "oh shit" was what was going through my mind. I layered him in blankets to try to stop the shivering and got out Dr. Jacob's cell phone number. About 5 minutes of this had been going on at this point. Note to self here: learn how to dial out of a foreign hotel room prior to staying the night.
I could not get the phone to work...I went to the front desk (which is not the same as the front desk in US hotels) where I knew nobody would be at that hour of night, and tried that phone. Again, no luck....and the German message that shouted out of the phone was of no help either! I grabbed some tourist brouchers (again in German) to see how many numbers people use in telephone numbers here...10....I needed to use 10 numbers-got it!
I go back to the room and figure out which 10 numbers i needed, but Dr. Jacob was not answering...so I email (because I know she has a blackberry)....no response. Now it has been 10 minutes of gasping. Just when I was ready to put him in the car and drive to the klinik to see any nurse on duty, he began to breath better and return to a normal state.
It all happened again around 4:30am, but only for 5 minutes or so. Dr. Jacob had returned my email a few hours later, but I had already turned off the computer. Today (Thursday) we arrived at the klinik early and they were ready for him.. Dr. J wanted to do an ultrasound of his lungs because she feared there may be fluid in his lungs. She was pleased that she did not see any fluid in his lungs. What has happened is this: Tony's liver we knew was already enlarged from all of the necrosis of the tumors PRIOR to us getting here this time. With the Removab treatment he did on Tuesday it has added additional inflammation to his liver and now his spleen (fyi: Tony has 2 spleens, which are taking up abdominal space).
The way she described it is that between the tumor spots in his lungs, enlarged spleen, enlarged liver, and lets not forget all of the gas and other stuff he has sitting in his GI tract, he has a tremendous amount of pressure on his lungs. This pressure is the cause of this shortness of breath. She thinks the necrosis will get bigger in the liver since he did the tx on Tuesday, so if it does, she will aspirate the fluid. She is not sure why the gas and back up is happening----no blockages noted and Tony's "dates" with the bathroom have all been fine.
So that's it..there you have it...add it to the twists and turns on this roller coaster ride we are on!!! That's all to report for now. His blood work is due back here today, so we will know that info later. He will NOT be going to the Frankfurt hospital to see the gentle hands (not really) of Prof. Vogl this trip. For one he is not in Germany right now and Dr. Jacob also feels like it would be too much for this short of a trip. More updates to come.....
Love,
Crystal
Tuesday, July 21, 2009
Dr. Jacob's magic tricks....
Today is Tuesday and I am the "fill-in writer" for Tony again tonight. Wow, what a day is a good way to start! I kind of had a feeling that I might just wake up in the middle of the night here and not be able to go back to sleep...and that's exactly what happened to me at 1 am here. No tv, no internet, no food, so what's a girl to do??? The answer-is think. Lots of thoughts go through your head when in a situation like ours. My number one thought last night was "Thank God Tony is sleeping and not showing any signs of pain." I think it was the first night in a month that he did not wake up at least 3-4 times in pain.
I woke Tony up at 7am (1 am back home) to get ready for the long day. We arrived to clinic at 8am and began his 8 hour infusion. It's funny how Dr. Jacob works her magic...you got a problem and she usually has an answer. She had switched some of Tony's pain meds around and took him off the oxycodone (or his MJ drug as he likes to call it). The patch seems to be working much better. She first drew blood before giving him the new antibody drug he got here in May (Removab...spelling???) and then plans on drawing blood again tomorrow to measure how quickly it is working in his system. Then the pre-meds began and it knocked him out within 10 minutes! I would dare to say he slept about 5 hours all together at the clinic--much needed rest I might add.
Tony had an ultasound with Dr. Jacob today (insert Tony's line about not being pregnant here). She does such a great job at showing you everything while she is doing it and explaining exactly what she sees---good or bad. As many of you who read this know, Tony has had several weeks of abdominal and back pain. The ultrasound solidified possibilities of why this has been happenning. She did not think that the pain was caused by the tumors directly. I will TRY to explain: she saw A LOT of necrosis in the tumors in the liver (this shows up as black areas in the liver when the tumor is in a state of dying cells/dead cells). She also saw white patches which are scar tissue in the liver (this can be a result of damage to the liver/tumors from past chemo,etc.) She explained that even if a tumor is in a state of necrosis it will show up very active on a PET scan and a radiologist will measure that as "active tumors". Tony had a HUGE area of necrosis in the middle of his liver that was not that big in May. This actually took her by surprise.
He still has tumors in his liver, but the overall message was that she felt like the treatment he did in May had stunted the progression of the tumors. She did not do the lungs because they do not show up on ultrasound in the same manner. She also saw a lot of ...and forgive my honesty here Tony.... gas and bowel in Tony's GI tract which is also adding in the distention of his abdomen. She cracked herself up and told him "you are full of sh** Tony" as she laughed. But this gas, bowel, and state of inflamation of the liver (due to current tumors and the necrosis process of the other tumors) explains the source of his abdominal and backpain. His kidneys and spleen were fine. Some mild fluid was noted in his liver as well. If some of the necrosis tumors get any larger she will drain (aspirate) the fluid from them...currently they are not large enough to do this.
His bilirubin was elevated (5.9) slightly (under 1.3 is normal) and two of his liver enzeymes were very elevated. Knowing this helps to explain the extreme fatigue and overall feeling awful. Her first instinct was that the reason he needed the ERCP procedure in May (stent put in his bile duct) was because the necrosis tumors and/orl ymph node inflamation was constricting the bile duct in that specific area. Hence, this could be why his eyes are still slightly jaundice and his urine is still not completely back to normal.
She gaves us a ton of meds to take tonight as she expects him to have a fever tonight with chills. She said his reaction may not be as intense since it was done via IV over the course of the day, plus his body has seen it before. None the less she told us to call her in the middle of the night if we needed to and she would come help. She only lives 2 miles from where we are staying.....what a doctor right????
We ended the day with going to this little Italian restaurant (where they now recognize Tony when he walks in) and watchin a movie. It is now 10:15 pm here and he has been asleep for over an hour...no bad side effects yet.
Hopefully, the desired author will be back at it tomorrow. i just wanted to post something because I know so many of you check his blog daily to see how it is going. Thanks to everyone back home. The kids sounded great on the phone-they are having fun at grandma and grandpas today. Give them a hug from us if you see them....until tomorrow.
Love,
Crystal
I woke Tony up at 7am (1 am back home) to get ready for the long day. We arrived to clinic at 8am and began his 8 hour infusion. It's funny how Dr. Jacob works her magic...you got a problem and she usually has an answer. She had switched some of Tony's pain meds around and took him off the oxycodone (or his MJ drug as he likes to call it). The patch seems to be working much better. She first drew blood before giving him the new antibody drug he got here in May (Removab...spelling???) and then plans on drawing blood again tomorrow to measure how quickly it is working in his system. Then the pre-meds began and it knocked him out within 10 minutes! I would dare to say he slept about 5 hours all together at the clinic--much needed rest I might add.
Tony had an ultasound with Dr. Jacob today (insert Tony's line about not being pregnant here). She does such a great job at showing you everything while she is doing it and explaining exactly what she sees---good or bad. As many of you who read this know, Tony has had several weeks of abdominal and back pain. The ultrasound solidified possibilities of why this has been happenning. She did not think that the pain was caused by the tumors directly. I will TRY to explain: she saw A LOT of necrosis in the tumors in the liver (this shows up as black areas in the liver when the tumor is in a state of dying cells/dead cells). She also saw white patches which are scar tissue in the liver (this can be a result of damage to the liver/tumors from past chemo,etc.) She explained that even if a tumor is in a state of necrosis it will show up very active on a PET scan and a radiologist will measure that as "active tumors". Tony had a HUGE area of necrosis in the middle of his liver that was not that big in May. This actually took her by surprise.
He still has tumors in his liver, but the overall message was that she felt like the treatment he did in May had stunted the progression of the tumors. She did not do the lungs because they do not show up on ultrasound in the same manner. She also saw a lot of ...and forgive my honesty here Tony.... gas and bowel in Tony's GI tract which is also adding in the distention of his abdomen. She cracked herself up and told him "you are full of sh** Tony" as she laughed. But this gas, bowel, and state of inflamation of the liver (due to current tumors and the necrosis process of the other tumors) explains the source of his abdominal and backpain. His kidneys and spleen were fine. Some mild fluid was noted in his liver as well. If some of the necrosis tumors get any larger she will drain (aspirate) the fluid from them...currently they are not large enough to do this.
His bilirubin was elevated (5.9) slightly (under 1.3 is normal) and two of his liver enzeymes were very elevated. Knowing this helps to explain the extreme fatigue and overall feeling awful. Her first instinct was that the reason he needed the ERCP procedure in May (stent put in his bile duct) was because the necrosis tumors and/orl ymph node inflamation was constricting the bile duct in that specific area. Hence, this could be why his eyes are still slightly jaundice and his urine is still not completely back to normal.
She gaves us a ton of meds to take tonight as she expects him to have a fever tonight with chills. She said his reaction may not be as intense since it was done via IV over the course of the day, plus his body has seen it before. None the less she told us to call her in the middle of the night if we needed to and she would come help. She only lives 2 miles from where we are staying.....what a doctor right????
We ended the day with going to this little Italian restaurant (where they now recognize Tony when he walks in) and watchin a movie. It is now 10:15 pm here and he has been asleep for over an hour...no bad side effects yet.
Hopefully, the desired author will be back at it tomorrow. i just wanted to post something because I know so many of you check his blog daily to see how it is going. Thanks to everyone back home. The kids sounded great on the phone-they are having fun at grandma and grandpas today. Give them a hug from us if you see them....until tomorrow.
Love,
Crystal
Monday, July 20, 2009
Here, and all is well
Today I am writing for Tony, so those of you eager to hear his charm and wit will have to wait another day. I am going to keep this short an sweet. Overall, the flight over was uneventful. Believe it or not we got our rental car in a record top speed of 5 minutes---they even gave us an automatic as we requested! Eric, if you are wondering it was actually a Benz and not the "bus" that you had the joy of riding in.
We are 22 hours in with little to no sleep now, but we just saw Dr. Jacob and she brought a few tears to Tony's eyes...I think he is so relieved to be here and the fatigue adds to the emotional part of all of this. In usual Dr. Jacob style, she got right to work on Tony. She is changing his pain medicine which was not controlling the pain. She looked @ him and said "you have a fever and you have lost weight." I don't know how she does it, but she was right on both. Tomorrow (Tuesday) he will have to have an infusion for 8 hours. They will take his blood before the 8 hour treatment to test it and then immediately after the treatment to measure how quickly the medicine is reacting to his tumor cells.
When I walked in this morning to the clinic (which is now bigger) I was once again taken back by how many people are here-10 "hooked up" individuals, and from what I am hearing from their conversations, most are from the US. It is so crazy why we all have to come here!!! Tony got sad and said "I just wish we didn't have to come here, its so far away from the kids." My response was, "I know, but the best way for your body to get the help and rest it needs is to be away from all of the things back home that don't allow you to do that." Those things meaning, the daily grind of living with two young kids, working, etc.
He will write tomorrow I am sure....it is time for me to try to sleep. Time to adjust our life by 6 hours:) As Tony would end it: More updates to come......
Best wishes,
Crystal
We are 22 hours in with little to no sleep now, but we just saw Dr. Jacob and she brought a few tears to Tony's eyes...I think he is so relieved to be here and the fatigue adds to the emotional part of all of this. In usual Dr. Jacob style, she got right to work on Tony. She is changing his pain medicine which was not controlling the pain. She looked @ him and said "you have a fever and you have lost weight." I don't know how she does it, but she was right on both. Tomorrow (Tuesday) he will have to have an infusion for 8 hours. They will take his blood before the 8 hour treatment to test it and then immediately after the treatment to measure how quickly the medicine is reacting to his tumor cells.
When I walked in this morning to the clinic (which is now bigger) I was once again taken back by how many people are here-10 "hooked up" individuals, and from what I am hearing from their conversations, most are from the US. It is so crazy why we all have to come here!!! Tony got sad and said "I just wish we didn't have to come here, its so far away from the kids." My response was, "I know, but the best way for your body to get the help and rest it needs is to be away from all of the things back home that don't allow you to do that." Those things meaning, the daily grind of living with two young kids, working, etc.
He will write tomorrow I am sure....it is time for me to try to sleep. Time to adjust our life by 6 hours:) As Tony would end it: More updates to come......
Best wishes,
Crystal
Thursday, July 16, 2009
Drum roll please...
Every morning for the past week or so the first thing I have done is check my e-mail. I'm still not sleeping well so usually I'm up early and figure that when I get the news I'll have time to digest it, good or bad, before I start the day.
Yesterday I woke up to yet another day of no e-mail from Dr. Jacob, so I e-mailed her and told her I was worried that the mail may have gotten lost and maybe I should go get another copy of the scan to bring with me to Germany. Her response...I have it (insert sounds of crickets chirping). My response back to her in so many words was...would you like to let me know how they look? Another good place to insert sounds of crickets chirping because I didn't hear from her the rest of the day.
I did however wake up this morning to an e-mail from her simply saying that everything seems to be stable. I can't say I was disappointed with the news, but still didn't get the details I was looking for. Dr. Jacob is a woman of few words in her e-mails, which I have always known and willing to deal with, so looking forward to being in front of her soon to get a full explanation.
Crystal and I have stayed relatively busy this week with work and the usual events. Lots of odds and ends to take care of before we take off Sunday, but we have all day Saturday to try to wrap things up. Packing is becoming second nature to us so we know what we need to do.
Sounds like I may be doing the Removab via IV versus injections along with a trip to Frankfurt to see Dr. Vogl during this trip. Interested to know why we are going IV, but I am sure there is a reason for it. My main goal is to get "patched" up while at the very least keep the tumors stable. I'm still in some pain, not sleeping well, very tired, etc. So would love to figure those issues out before I return home.
Special thanks in advance to those of you watching and helping out with Ashley and William the next two weeks...Crystal's mom, Donna, my dad and step-mom, Jerry and Karen, Carol and Paul Lauck, Steve and Lisa Moore, Doug and Paula Bova, Nick and Rachel Schotts, Ty and Katrin Gerig, Scott and Laurie Dyer and Terri Park. They are going to be two very busy children which could be a very good thing or a not so good thing (because they will be a little out of their norm), but I tend to think it will be a good thing. They may not want us to come home!
I don't plan on writing again until we get to Germany...let's hope I can stay news free until then. Here's to a successful trip back to the Mother Country...
More updates to come....
Love,
Tony
Yesterday I woke up to yet another day of no e-mail from Dr. Jacob, so I e-mailed her and told her I was worried that the mail may have gotten lost and maybe I should go get another copy of the scan to bring with me to Germany. Her response...I have it (insert sounds of crickets chirping). My response back to her in so many words was...would you like to let me know how they look? Another good place to insert sounds of crickets chirping because I didn't hear from her the rest of the day.
I did however wake up this morning to an e-mail from her simply saying that everything seems to be stable. I can't say I was disappointed with the news, but still didn't get the details I was looking for. Dr. Jacob is a woman of few words in her e-mails, which I have always known and willing to deal with, so looking forward to being in front of her soon to get a full explanation.
Crystal and I have stayed relatively busy this week with work and the usual events. Lots of odds and ends to take care of before we take off Sunday, but we have all day Saturday to try to wrap things up. Packing is becoming second nature to us so we know what we need to do.
Sounds like I may be doing the Removab via IV versus injections along with a trip to Frankfurt to see Dr. Vogl during this trip. Interested to know why we are going IV, but I am sure there is a reason for it. My main goal is to get "patched" up while at the very least keep the tumors stable. I'm still in some pain, not sleeping well, very tired, etc. So would love to figure those issues out before I return home.
Special thanks in advance to those of you watching and helping out with Ashley and William the next two weeks...Crystal's mom, Donna, my dad and step-mom, Jerry and Karen, Carol and Paul Lauck, Steve and Lisa Moore, Doug and Paula Bova, Nick and Rachel Schotts, Ty and Katrin Gerig, Scott and Laurie Dyer and Terri Park. They are going to be two very busy children which could be a very good thing or a not so good thing (because they will be a little out of their norm), but I tend to think it will be a good thing. They may not want us to come home!
I don't plan on writing again until we get to Germany...let's hope I can stay news free until then. Here's to a successful trip back to the Mother Country...
More updates to come....
Love,
Tony
Friday, July 10, 2009
Mail is slower than I anticipated...
I know that when I send letters to Germany they get there in a week, because I have experienced that transit time, but as of today Dr Jacob still didn't have my scans in her hand. Now I'm just hoping she gets them before Crystal and I get there! I know the scan results will determine what kind of treatment and where we need to go first so keeping my fingers crossed early next week we will have some sort of schedule.
The week continues to be an up and down ride. Tonight will be the first night I don't take any medication (we'll see)....hoping to get some of the "harder stuff" out of my system. I'm playing doctor on my own here, thinking that maybe this will help my mood, my lethargy, and maybe even some of my pain. This shouldn't surprise anyone, but I have been doing some research on my pain and discovered a very interesting diagnosis that is nearly every symptom I have. I don't want to publicly embarrass myself so won't mention the diagnosis, but I'm going to try a few things and ask Dr. Jacob about it when we get to Germany. Not sure if my diagnosis can be caused by tumors, but typically it isn't and I'm banking it could be caused by the ERCP procedure I did several weeks ago. Ironically the pain never really stopped after that procedure. My diagnosis isn't a great one, but if it isn't cancer I would be extremely happy and know we could probably better control my pain through some medications. We'll see if Dr. Tony comes through.
I know my blogs haven't been the most upbeat so I'm going to end this one tonight in the event I start going down that road again. Simply put, the week's been a tough one mentally and physically and not sure what I would do without Crystal. We've had some great talks this week and I find myself loving her more each day. I don't know how she gets through each day sometimes, but she seems to always find a way and continues to be as supportive as possible. She continues to be my life line in this battle and I know without any doubt I wouldn't be here if she wasn't by my side.
Based on the shortness of this I going to "plug" my next fundraiser again. We are full boar in the planning process, which really isn't that big of a deal this time.
The date again is September 10th, at Mudsocks Bar and Grill in Fishers, IN.
This is a Thursday night (rain or shine), but I really hope that doesn't stop people---I obviously want as many people to come out as possible. No guilt trip from me....but I would love to see everyone :) . The main event is Mike and Joe, who are my college Fraternity brothers. If you have never heard them play, you are in for a treat. The night will be much less "formal" than last years event. We may have some items to raffle off or some other little activities, but as of now you can plan on a normal night out to see a band play, have some drinks and enjoy the company of friends. You can make it as cheap or as expensive of a night as you would like. If you have talked to me about fundraising, you know I am very humbled by it and really appreciate the support, but still get a little uncomfortable about it. I just want people to come out, have a normal night, and have some fun. I know the fundraising takes care if itself. Please mark it on your calendars, invite your friends, neighbors, relatives, etc.
More updates to come...
Love,
Tony
The week continues to be an up and down ride. Tonight will be the first night I don't take any medication (we'll see)....hoping to get some of the "harder stuff" out of my system. I'm playing doctor on my own here, thinking that maybe this will help my mood, my lethargy, and maybe even some of my pain. This shouldn't surprise anyone, but I have been doing some research on my pain and discovered a very interesting diagnosis that is nearly every symptom I have. I don't want to publicly embarrass myself so won't mention the diagnosis, but I'm going to try a few things and ask Dr. Jacob about it when we get to Germany. Not sure if my diagnosis can be caused by tumors, but typically it isn't and I'm banking it could be caused by the ERCP procedure I did several weeks ago. Ironically the pain never really stopped after that procedure. My diagnosis isn't a great one, but if it isn't cancer I would be extremely happy and know we could probably better control my pain through some medications. We'll see if Dr. Tony comes through.
I know my blogs haven't been the most upbeat so I'm going to end this one tonight in the event I start going down that road again. Simply put, the week's been a tough one mentally and physically and not sure what I would do without Crystal. We've had some great talks this week and I find myself loving her more each day. I don't know how she gets through each day sometimes, but she seems to always find a way and continues to be as supportive as possible. She continues to be my life line in this battle and I know without any doubt I wouldn't be here if she wasn't by my side.
Based on the shortness of this I going to "plug" my next fundraiser again. We are full boar in the planning process, which really isn't that big of a deal this time.
The date again is September 10th, at Mudsocks Bar and Grill in Fishers, IN.
This is a Thursday night (rain or shine), but I really hope that doesn't stop people---I obviously want as many people to come out as possible. No guilt trip from me....but I would love to see everyone :) . The main event is Mike and Joe, who are my college Fraternity brothers. If you have never heard them play, you are in for a treat. The night will be much less "formal" than last years event. We may have some items to raffle off or some other little activities, but as of now you can plan on a normal night out to see a band play, have some drinks and enjoy the company of friends. You can make it as cheap or as expensive of a night as you would like. If you have talked to me about fundraising, you know I am very humbled by it and really appreciate the support, but still get a little uncomfortable about it. I just want people to come out, have a normal night, and have some fun. I know the fundraising takes care if itself. Please mark it on your calendars, invite your friends, neighbors, relatives, etc.
More updates to come...
Love,
Tony
Monday, July 6, 2009
Just writing....
No new news to report, but I haven't written in awhile so thought I would write a few things tonight.
Our go-go-go weekend turned into a fairly quiet weekend. Many of our plans "fell through" which really turned out okay since I think I needed some rest. I can't explain how tired I feel all the time. I'm not sure if this is good or bad, but I almost require a short nap during the day to make it through the day. Sleeping at night hasn't been a problem, so the needed nap isn't coming from lack of sleep at night.
I tell Crystal I feel like I live the same day over and over again. I wake up feeling fairly good and well rested. About 1:00 I start getting tired and the pain in my abdomen starts to surface. If I get a nap the pain subsides a little, if not it continues until the end of the day. By the time I am ready for bed the pain begins to shoot up into my chest and back. I take some pain medicine and fall asleep until the next day. Who knows what all of this means (i'm not convinced it is tumor related, but I also have no way of knowing this for sure).
Although I sent a copy of my scan to Germany on Friday, my little bull dog called the IU Med center today to see what the radiologist had to say. She knows I'm really anxious about this and although we know we can't take IUs "take" as exactly what is happening I'm sure she thought a little good news would help if that was the case. Long story short the report really didn't tell us much. Some of the sections sounded like there was progression and some of the sections sounded as if things may be better. Inconclusive to both of us and not one that we will get excited or disappointed about. Crystal e-mailed the report to Dr. Jacob and she also seemed to be confused by the report. She said she would share the scan with Dr. Vogl when she receives it, let us know and then we would also have a decision on whether we would go to see Dr. Vogl first or start at the Klinic. I'm hoping we'll know something in the next few days.
I did finally take the time to watch "Farrah's Story" this weekend. I wanted to watch it before I went back to Germany, don't ask me why---but I did. I thought she did a good job, but it wasn't exactly what I expected. I spent some time watching with a smile, other times with tears. Watching her go through those procedures knowing I was on those same tables was fairly hard to watch. Hearing her say "I just want my life back"--was hard to watch.
I've learned so many positive things from cancer and have had so many positive things occur in my life because of this disease, but not always having your life because of your health is by far one of the most difficult parts of this disease. For example, Ashley wanted me to take her to the pool yesterday and I physically couldn't do it. Crystal was on her way to the store and we told her that I needed to rest. I would do anything to feel well enough to have taken her down to the pool and I think she understands, but doesn't make it any easier. Luckily one of our neighbors called a little later and invited her to go to the pool (thanks Prices), but when she came back and we started talking about it again she asked why I had to have the boo-boo in my belly. These are the times I want my life back...
I'm trying really hard to stay positive and peaceful while I wait for the results. I give myself a solid "A" at times and a dreadful "F" at other times. I guess that is to be expected. We'll get through regardless. Thanks to everyone for the recent support. I'll post results when I have them.
More updates to come...
Love,
Tony
Our go-go-go weekend turned into a fairly quiet weekend. Many of our plans "fell through" which really turned out okay since I think I needed some rest. I can't explain how tired I feel all the time. I'm not sure if this is good or bad, but I almost require a short nap during the day to make it through the day. Sleeping at night hasn't been a problem, so the needed nap isn't coming from lack of sleep at night.
I tell Crystal I feel like I live the same day over and over again. I wake up feeling fairly good and well rested. About 1:00 I start getting tired and the pain in my abdomen starts to surface. If I get a nap the pain subsides a little, if not it continues until the end of the day. By the time I am ready for bed the pain begins to shoot up into my chest and back. I take some pain medicine and fall asleep until the next day. Who knows what all of this means (i'm not convinced it is tumor related, but I also have no way of knowing this for sure).
Although I sent a copy of my scan to Germany on Friday, my little bull dog called the IU Med center today to see what the radiologist had to say. She knows I'm really anxious about this and although we know we can't take IUs "take" as exactly what is happening I'm sure she thought a little good news would help if that was the case. Long story short the report really didn't tell us much. Some of the sections sounded like there was progression and some of the sections sounded as if things may be better. Inconclusive to both of us and not one that we will get excited or disappointed about. Crystal e-mailed the report to Dr. Jacob and she also seemed to be confused by the report. She said she would share the scan with Dr. Vogl when she receives it, let us know and then we would also have a decision on whether we would go to see Dr. Vogl first or start at the Klinic. I'm hoping we'll know something in the next few days.
I did finally take the time to watch "Farrah's Story" this weekend. I wanted to watch it before I went back to Germany, don't ask me why---but I did. I thought she did a good job, but it wasn't exactly what I expected. I spent some time watching with a smile, other times with tears. Watching her go through those procedures knowing I was on those same tables was fairly hard to watch. Hearing her say "I just want my life back"--was hard to watch.
I've learned so many positive things from cancer and have had so many positive things occur in my life because of this disease, but not always having your life because of your health is by far one of the most difficult parts of this disease. For example, Ashley wanted me to take her to the pool yesterday and I physically couldn't do it. Crystal was on her way to the store and we told her that I needed to rest. I would do anything to feel well enough to have taken her down to the pool and I think she understands, but doesn't make it any easier. Luckily one of our neighbors called a little later and invited her to go to the pool (thanks Prices), but when she came back and we started talking about it again she asked why I had to have the boo-boo in my belly. These are the times I want my life back...
I'm trying really hard to stay positive and peaceful while I wait for the results. I give myself a solid "A" at times and a dreadful "F" at other times. I guess that is to be expected. We'll get through regardless. Thanks to everyone for the recent support. I'll post results when I have them.
More updates to come...
Love,
Tony
Wednesday, July 1, 2009
Big day tomorrow...
Since last Thursday we have basically been non stop which is both a good and bad thing. The steroids I’m sure helped with my energy level, but we also had a fantastic weekend with our friends the Petruska’s at their lake house Friday night and Saturday as well as a house full of family on Sunday for the kid’s Baptism. Laughing, doing things I enjoy and being around people I enjoy seem to help keep any pains or thoughts of cancer away, so I know this weekend had a great healing effect steroids or not.
The bad part is I’m a little more tired this week and although the chemo stopped Tuesday so did the steroid. Fortunately I have no real “treatments” for a few weeks until we head back to Germany. I find myself taking short naps when I get home from work at night and my pain is back in my chest and back, but I’m living and getting through each day with as much of a smile on my face as possible. My message to myself this week is if I want to be sick, I’ll be sick---if not, than I can continue to tell myself that I don’t have to be sick or be going through what I am going through. Trust me, it ain’t easy preaching to yourself, but I know there is some truth in how you see yourself.
Big day tomorrow from the standpoint of getting a PET scan. Not planning on seeing or hearing results tomorrow from the doctors here in the States. I’ll send the scan to Dr. Jacob and let her give me the news sometime next week. Always a little anxious about the scans---this one will be no different based on some of the issues I have been having lately, but will try not to “worry” until I know exactly what we are dealing with—maybe nothing, right?
I wanted to wait to book my flight until I knew for sure what my scan said, but we ran out of time. We are under three weeks and even as I tried to book my flight today the price went up $500.00 from the moment I accepted the flight until the time I was asked for my credit card. Luckily, I got the flight at the originally quoted price---I’m trying to forgive the airlines for being such a pain in the rear (although I should be happy no matter what as long as I arrive and return safely which is the ultimate goal).
For now the plan is for Crystal and I to leave the 19th and return on the 31st. Dr. Jacob has already speculated on what she thinks I will be doing, but I’m not sharing until I know for sure. Looks like a visit to Prof Vogl and more than likely an alternative way to receive the Removab along with some more Vidaza shots. Should be a really good time. I really want to feel well enough so Crystal and I can spend some quality time together. In October she was there for the first week when we didn’t have a car and in January when she was there we didn’t have time to enjoy the town or “sight see” due to the weather. Weather should be nice and we'll have a car, so as long as I’m okay we should be able to enjoy ourselves a little.
Like everyone else, we have another busy weekend this weekend. More events with family and friends—trying to get that rest in before we go, go, go. Looking forward to it, I can not believe it is July already.
More updates to come….
Love,
Tony
The bad part is I’m a little more tired this week and although the chemo stopped Tuesday so did the steroid. Fortunately I have no real “treatments” for a few weeks until we head back to Germany. I find myself taking short naps when I get home from work at night and my pain is back in my chest and back, but I’m living and getting through each day with as much of a smile on my face as possible. My message to myself this week is if I want to be sick, I’ll be sick---if not, than I can continue to tell myself that I don’t have to be sick or be going through what I am going through. Trust me, it ain’t easy preaching to yourself, but I know there is some truth in how you see yourself.
Big day tomorrow from the standpoint of getting a PET scan. Not planning on seeing or hearing results tomorrow from the doctors here in the States. I’ll send the scan to Dr. Jacob and let her give me the news sometime next week. Always a little anxious about the scans---this one will be no different based on some of the issues I have been having lately, but will try not to “worry” until I know exactly what we are dealing with—maybe nothing, right?
I wanted to wait to book my flight until I knew for sure what my scan said, but we ran out of time. We are under three weeks and even as I tried to book my flight today the price went up $500.00 from the moment I accepted the flight until the time I was asked for my credit card. Luckily, I got the flight at the originally quoted price---I’m trying to forgive the airlines for being such a pain in the rear (although I should be happy no matter what as long as I arrive and return safely which is the ultimate goal).
For now the plan is for Crystal and I to leave the 19th and return on the 31st. Dr. Jacob has already speculated on what she thinks I will be doing, but I’m not sharing until I know for sure. Looks like a visit to Prof Vogl and more than likely an alternative way to receive the Removab along with some more Vidaza shots. Should be a really good time. I really want to feel well enough so Crystal and I can spend some quality time together. In October she was there for the first week when we didn’t have a car and in January when she was there we didn’t have time to enjoy the town or “sight see” due to the weather. Weather should be nice and we'll have a car, so as long as I’m okay we should be able to enjoy ourselves a little.
Like everyone else, we have another busy weekend this weekend. More events with family and friends—trying to get that rest in before we go, go, go. Looking forward to it, I can not believe it is July already.
More updates to come….
Love,
Tony
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