Never saw her, talked to her or wrote her, but for some reason felt some connection to Farrah Fawcett. Mainly because she was going through some of the same treatments as I was and she was the one patient that in a weird way I could identify with. The doctors and nurses rarely talked openly about her, but I knew many times when they would talk about my treatments and side effects other patients would experience, those came from Farrah's experiences.
I commend her for using her celebrity power to do some of the things I would like to do in opening up the eyes of others about other treatment options outside of the United States. Note: her documentary is airing agian tomorrow night at 8:00 EST, I believe on NBC. I know she was a fighter, but also know the toll this disease takes on someone physically and mentally. I'm of course saddened by the news, but like all the people I have known that have moved on because of cancer (or chemo), I know we are all different. For what it is worth, I hope she was at peace when she died and I wish her family and friends strength during this loss.
I'm a little more up beat today. Started some steroids yesterday to help my body combat my inflammation, liver enzymes and energy level. I assume they making me feel better, but I guess the further away we get from the Vidaza shots probably help too. Several more days of chemo and we'll see where we stand. I'll have more blood test results this weekend so hopefully we'll see some improvements. Always good news on the steroids...I'm looking more and more like a body builder, good for the self esteem.
As I mentioned yesterday, looking forward to the weekend. I have some people recently to thank, but I won't single anyone out right now. The support we receive continues to be a blessing....I want to thank our neighbors (I will eventually name each of you) for mowing our lawn each week. May seem like a little thing, but I can't explain in words how much that helps Crystal and I. With me operating on empty lately, Crystal has been working overtime at home. Having some help with the lawn is sooooo much appreciated (especially in this heat). I hope to get out there soon---believe me there is nothing I would rather do than mow the lawn. I also want to thank someone (who will remain anonymous) for really helping me out with a big issue I was having this week. I know you read this and your help is appreciated more than you know.
More updates to come...
Love,
Tony
Thursday, June 25, 2009
Wednesday, June 24, 2009
Up and down...
Monday was my last Vidaza injection and I must say I tolerated the drug fairly well. No nausea to me is a huge win so I'm thankful for the anti-nausea medication or whatever else helped stopped that reaction. Although I don't have nausea I am completely worn out. I know my body is wondering when it is going to get a break. I started chemo Tuesday and I'm even more worn out than I was before. Good news is being tired is really my main side effect, but I can't tell you how difficult it is to come home and hit the couch while I watch Crystal carry the load with the kids. She continues to amaze me and even though I know she gets frustrated at times, she doesn't always show it.
When I was going through traditional chemo treatment a couple of years ago and would get really sick I would always tell her that this isn't worth it....if I can't "live" then why bother would always be my comment to her. I'm no where near there at this point, but I don't feel like doing much, especially after the days I go to work and being this tired reminds me of those days a couple years ago. Watching William in the yard kicking a soccer ball or hitting a baseball or Ashley wanting to go down to the pool is difficult. Mentally I'm still in the game, but I could use a break from treatment and have a few weeks where maybe I could feel "normal" again---be that normal father and husband again. Something I never take for granted when I'm feeling good.
Chemo will be over next week, I have a scan next Thursday, send it to Germany and find out what we are going to do. I anticipate that we will be back in the mother country July 20th, so not much rest for the weary. Still, I'm keeping my fingers crossed for a few good weeks and hopefully I can get more support in Germany if I'm not feeling great.
As usual I don't want to complain. I'm not in serious pain and I'm living--working every day, doing things on the weekends. Bottom line is I could use a little break. I stopped taking my fifty or so supplements a day during the Vidaza treatment just to feel like I was getting a break from something. I'm slowly getting back on them, but it was nice to not have them hanging over my head for a few days.
Last weekend was a nice Father's Day. We were able to spend some time with my family on Sunday. This weekend we have plans to do nothing at a friend's lake for a couple of days. Hoping for some good weather. I'm not going to get started on religion (at least in this entry), but Sunday Ashley and William get baptised. Probably a surprise to many of you that they aren't already, but let's just say the timing has never been right and their father has had some issues with the church. My disclaimer in case anyone cares is that my spirituality remains at an all time high along with my relationship with God. I believe there is a big difference between religion and spirituality....I will leave it at that for now. Although we have planted many seeds of spirituality with our kids, like I said before, the timing seemed right and it's time for them to start creating their own spiritual journey. Crystal and I are both looking forward to it and we appreciate the Holy Spirit of Geist welcoming us and our children with open arms based on our honesty with them. Also a good chance to be with family that day which is always good for me.
More updates to come...
Love,
Tony
When I was going through traditional chemo treatment a couple of years ago and would get really sick I would always tell her that this isn't worth it....if I can't "live" then why bother would always be my comment to her. I'm no where near there at this point, but I don't feel like doing much, especially after the days I go to work and being this tired reminds me of those days a couple years ago. Watching William in the yard kicking a soccer ball or hitting a baseball or Ashley wanting to go down to the pool is difficult. Mentally I'm still in the game, but I could use a break from treatment and have a few weeks where maybe I could feel "normal" again---be that normal father and husband again. Something I never take for granted when I'm feeling good.
Chemo will be over next week, I have a scan next Thursday, send it to Germany and find out what we are going to do. I anticipate that we will be back in the mother country July 20th, so not much rest for the weary. Still, I'm keeping my fingers crossed for a few good weeks and hopefully I can get more support in Germany if I'm not feeling great.
As usual I don't want to complain. I'm not in serious pain and I'm living--working every day, doing things on the weekends. Bottom line is I could use a little break. I stopped taking my fifty or so supplements a day during the Vidaza treatment just to feel like I was getting a break from something. I'm slowly getting back on them, but it was nice to not have them hanging over my head for a few days.
Last weekend was a nice Father's Day. We were able to spend some time with my family on Sunday. This weekend we have plans to do nothing at a friend's lake for a couple of days. Hoping for some good weather. I'm not going to get started on religion (at least in this entry), but Sunday Ashley and William get baptised. Probably a surprise to many of you that they aren't already, but let's just say the timing has never been right and their father has had some issues with the church. My disclaimer in case anyone cares is that my spirituality remains at an all time high along with my relationship with God. I believe there is a big difference between religion and spirituality....I will leave it at that for now. Although we have planted many seeds of spirituality with our kids, like I said before, the timing seemed right and it's time for them to start creating their own spiritual journey. Crystal and I are both looking forward to it and we appreciate the Holy Spirit of Geist welcoming us and our children with open arms based on our honesty with them. Also a good chance to be with family that day which is always good for me.
More updates to come...
Love,
Tony
Saturday, June 20, 2009
Another round of Vidaza...
After my good news Monday, I took some time to live a "normal" life for the next couple of days. I still had some discomfort in my belly, but I worked Tuesday- Thursday like a normal person and although I was tired at the end of each day, I slept fairly well at night and felt like I was beginning to build on the good the news.
A second round of Vidaza was on my schedule to begin Thursday. This was one of the new drugs I received as soon as we got the news in Germany that I had some progression. This drug is not the "new" antibody, it is the one that changes the DNA of my cancer cells and has actually been approved by the FDA recently in the U.S. (mainly for MDS). I knew going into this week that I would be taking these injections and even though I knew the side effects it caused in Germany (nausea), I was hopeful that things would be a little different here based on not going through a chemoembolisation treatment. My neighbor agreed to help me inject the Vidaza into my belly for the five consecutive days I'm supposed to take it. The amps I brought home from Germany look like they have a cotton ball inside so after several e-mails to Dr. Jacob I was under the impression that once the amps had contact with oxygen the powder inside would liquefy. Unfortunately, once we punctured the amp nothing happened. Carol was certain that we needed to mix something with the powder and I couldn't disagree with her assessment. She knew of other drugs that had to be reconstituted, but the problem was we had no idea how much or with what. Soon we found ourselves on the Internet typing in words from the German directions we had trying to translate the directions into English. Also, thanks to the Internet we found some English packing directions as well.
Soon we figured out that we needed 4ml of sterile water mixed with the powder. Although I was sure this was the correct procedure, this was one more example of going out on a limb in my treatment. I know Carol wouldn't do anything she wasn't comfortable with, so I felt good about what we were doing based on her comfort level...but as most of you know I'll pretty much do anything at this point. Right or wrong, about a hour after she arrived the Vidaza was in my belly and we were off and running with another procedure.
I had not had time to eat so I ate a chicken salad before I went to bed (by this time it was around 9:30 pm). In Germany, about two hours after my injection I would make a trip to the restroom to empty my stomach and then go about my business the rest of the day. I felt fine when I went to bed, but my stomach woke me up at 11:30...ironically two hours after the injection. The rest of the night I spent getting reacquainted with the toilets in my house. Long night to say the least.
I spent early Friday morning e-mailing Dr. Jacob and my oncologist here, Dr. Helft, for ways to reduce the nausea. She recommended some medication that Dr. Helft also thought would be effective and soon was at CVS (where I am a VIP by the way), paying for and popping pills.
Of course I was disappointed with the nausea, but I knew I only had four more injections so as much as I hoped I wouldn't have repeat nights, I also knew that I can do anything for four days. The most disappointing part was we had plans on Friday night to go out with eight of our close friends and my sister Tonya and her family was coming in Sunday. I really didn't want to be sick for those events, but I was and am determined to go on sick or not. Last night I took my bucket and went out. Fortunately the new medicine seemed to help since the bucket sat idle all night. I also have pretty much gone on a liquid diet, especially after the injections which may have helped as well. I had a great time and was glad I didn't let this get in my way. Wish cancer wasn't such a big part of my life, but at the moment it seems to take center stage most of the time. Last night was a small win in not letting it get in our way. I plan to keep it that way the rest of the weekend and as much as I can moving forward.
The third injection is already complete and so far on Saturday my toilets and I have remained on our normal terms. Two more injections to go and then I start some chemo for a week or so (long story, but haven't determined yet exactly what I am doing). My oncologist here is having some discussions with Dr. Jacob before we make a final decision. Either way, I'll be back on something by next week, neither of which I believe will cause to many side effects based on the dosage, but we'll see.
On a complete side note, many of you may have seen on the website to save the date 9/10/09. We have solidified that date as the night of the next fundraiser. I'll get into more details in the next several days and I'm sure over the next month or so, but get this on your calendar now. It is a Thursday night, but hoping that won't stop to many people. I can assure you the night will be a good one and would love to see as many people as possible. Easy for me to say, but take off work or go in late the next day. Nothing better than a three day weekend right? One of the best healing antidotes for me is to spend time with people I care about...the fundraising efforts to me is secondary and will take care of itself naturally. Again...September 10th, Mudsocks in Noblesville...details to follow.
More updates to come...
Love,
Tony
A second round of Vidaza was on my schedule to begin Thursday. This was one of the new drugs I received as soon as we got the news in Germany that I had some progression. This drug is not the "new" antibody, it is the one that changes the DNA of my cancer cells and has actually been approved by the FDA recently in the U.S. (mainly for MDS). I knew going into this week that I would be taking these injections and even though I knew the side effects it caused in Germany (nausea), I was hopeful that things would be a little different here based on not going through a chemoembolisation treatment. My neighbor agreed to help me inject the Vidaza into my belly for the five consecutive days I'm supposed to take it. The amps I brought home from Germany look like they have a cotton ball inside so after several e-mails to Dr. Jacob I was under the impression that once the amps had contact with oxygen the powder inside would liquefy. Unfortunately, once we punctured the amp nothing happened. Carol was certain that we needed to mix something with the powder and I couldn't disagree with her assessment. She knew of other drugs that had to be reconstituted, but the problem was we had no idea how much or with what. Soon we found ourselves on the Internet typing in words from the German directions we had trying to translate the directions into English. Also, thanks to the Internet we found some English packing directions as well.
Soon we figured out that we needed 4ml of sterile water mixed with the powder. Although I was sure this was the correct procedure, this was one more example of going out on a limb in my treatment. I know Carol wouldn't do anything she wasn't comfortable with, so I felt good about what we were doing based on her comfort level...but as most of you know I'll pretty much do anything at this point. Right or wrong, about a hour after she arrived the Vidaza was in my belly and we were off and running with another procedure.
I had not had time to eat so I ate a chicken salad before I went to bed (by this time it was around 9:30 pm). In Germany, about two hours after my injection I would make a trip to the restroom to empty my stomach and then go about my business the rest of the day. I felt fine when I went to bed, but my stomach woke me up at 11:30...ironically two hours after the injection. The rest of the night I spent getting reacquainted with the toilets in my house. Long night to say the least.
I spent early Friday morning e-mailing Dr. Jacob and my oncologist here, Dr. Helft, for ways to reduce the nausea. She recommended some medication that Dr. Helft also thought would be effective and soon was at CVS (where I am a VIP by the way), paying for and popping pills.
Of course I was disappointed with the nausea, but I knew I only had four more injections so as much as I hoped I wouldn't have repeat nights, I also knew that I can do anything for four days. The most disappointing part was we had plans on Friday night to go out with eight of our close friends and my sister Tonya and her family was coming in Sunday. I really didn't want to be sick for those events, but I was and am determined to go on sick or not. Last night I took my bucket and went out. Fortunately the new medicine seemed to help since the bucket sat idle all night. I also have pretty much gone on a liquid diet, especially after the injections which may have helped as well. I had a great time and was glad I didn't let this get in my way. Wish cancer wasn't such a big part of my life, but at the moment it seems to take center stage most of the time. Last night was a small win in not letting it get in our way. I plan to keep it that way the rest of the weekend and as much as I can moving forward.
The third injection is already complete and so far on Saturday my toilets and I have remained on our normal terms. Two more injections to go and then I start some chemo for a week or so (long story, but haven't determined yet exactly what I am doing). My oncologist here is having some discussions with Dr. Jacob before we make a final decision. Either way, I'll be back on something by next week, neither of which I believe will cause to many side effects based on the dosage, but we'll see.
On a complete side note, many of you may have seen on the website to save the date 9/10/09. We have solidified that date as the night of the next fundraiser. I'll get into more details in the next several days and I'm sure over the next month or so, but get this on your calendar now. It is a Thursday night, but hoping that won't stop to many people. I can assure you the night will be a good one and would love to see as many people as possible. Easy for me to say, but take off work or go in late the next day. Nothing better than a three day weekend right? One of the best healing antidotes for me is to spend time with people I care about...the fundraising efforts to me is secondary and will take care of itself naturally. Again...September 10th, Mudsocks in Noblesville...details to follow.
More updates to come...
Love,
Tony
Monday, June 15, 2009
Finally some good news...
I needed today more than anything. I've been feeling much better the last couple of days, but needed some reassurance that my intuition was correct. Although I thought they would schedule my ultrasound Tuesday I received a call this morning that they could perform the procedure today. Maybe IU Med is finally catching on that if they don't want to hear from my wife they will get me on the schedule right away. Little did they know that Tuesday would have been okay with me. Still, I didn't want to miss moving the scan up a day so I went.
I spoke with Dr. Jacob this morning and we were able to talk about what has happened over the past few days. She believes everything I have been going through is normal based on what she has given me and the procedures I have gone through here. She didn't believe that I would have a tumor blocking my bile duct (I must admit my oncologist here does not believe it either) and couldn't understand why no one could tell me what it was. We think maybe the blockage is coming from an enlarged lymph node, but really don't know for sure. I told her about my abdominal ultrasound today, that my oncologist thought I may have fluid in my abdomen causing my distension. She scared me a little, saying that if I did have fluid in my abdomen and it tested positive (that it is coming from my tumors) that I needed to get back to Germany immediately. She said that would concern her and even though didn't believe I had fluid thought the procedure would be a good idea just to rule it out. Can I just say I love this women. My intuition lately has been telling me that everything is okay, but with all of the negative news along with feeling terrible I have been doubting myself and worrying quite a bit.
Today I am hoping we turned the corner. The great news is there was no fluid in my abdomen. The good news is my blood tests came back very positive. Bilirubin counts are much better and liver enzyme counts are lower. The only "worry" I have right now is getting my liver inflammation down. Dr. Jacob assures me this is normal, but I would like to look like I'm four months pregnant versus five or six months pregnant. I'm not going to insert another ultrasound joke here....
I hope this is the start of a good trend. I'm still a little uncomfortable from the inflammation, taking pain medication as needed, but not overdosing. I'm gaining some energy and feel like I'm getting my swagger back. I want to win this more than anything...I've been through rough patches before, but this one seemed to be really rough and longer than normal. I'm keeping my fingers crossed that the road ahead has recently been paved and we can get back in the right direction. Whatever this week brings, we had a really good start.
More updates to come...
Love,
Tony
I spoke with Dr. Jacob this morning and we were able to talk about what has happened over the past few days. She believes everything I have been going through is normal based on what she has given me and the procedures I have gone through here. She didn't believe that I would have a tumor blocking my bile duct (I must admit my oncologist here does not believe it either) and couldn't understand why no one could tell me what it was. We think maybe the blockage is coming from an enlarged lymph node, but really don't know for sure. I told her about my abdominal ultrasound today, that my oncologist thought I may have fluid in my abdomen causing my distension. She scared me a little, saying that if I did have fluid in my abdomen and it tested positive (that it is coming from my tumors) that I needed to get back to Germany immediately. She said that would concern her and even though didn't believe I had fluid thought the procedure would be a good idea just to rule it out. Can I just say I love this women. My intuition lately has been telling me that everything is okay, but with all of the negative news along with feeling terrible I have been doubting myself and worrying quite a bit.
Today I am hoping we turned the corner. The great news is there was no fluid in my abdomen. The good news is my blood tests came back very positive. Bilirubin counts are much better and liver enzyme counts are lower. The only "worry" I have right now is getting my liver inflammation down. Dr. Jacob assures me this is normal, but I would like to look like I'm four months pregnant versus five or six months pregnant. I'm not going to insert another ultrasound joke here....
I hope this is the start of a good trend. I'm still a little uncomfortable from the inflammation, taking pain medication as needed, but not overdosing. I'm gaining some energy and feel like I'm getting my swagger back. I want to win this more than anything...I've been through rough patches before, but this one seemed to be really rough and longer than normal. I'm keeping my fingers crossed that the road ahead has recently been paved and we can get back in the right direction. Whatever this week brings, we had a really good start.
More updates to come...
Love,
Tony
Sunday, June 14, 2009
Scratch ERCP off the list...
It is official. I can add ERCP to my list of medical procedures. Not sure I want to be that thirty seven year old that would go up against any other thirty seven year old in “medical procedures performed", but I guess in my competitive nature that is one positive I can see coming out of this. I think there is a name for people that like to have medical procedures (hypochondriac maybe)...those poor people need help.
Anyway…the semi-conscious anesthesia during the procedure was more like “lights out.” I was actually a little nervous because I do pretty well with anesthesia and tend to not only wake up easily, but remember events fairly well. Whatever man or woman can remember their ERCP I would like to meet them. The procedure is performed while you are lying on your stomach, so the last thing I remember is telling them how uncomfortable I was…noting that I was there because I was having some abdominal pain. “You’ll be comfortable soon” are the last words I heard. The anesthesia was so semi-conscious like that I could barely wake up after the procedure and during the ride home. Maybe they did that to me on purpose for the smart alec remark before I went to sleep.
The procedure went as planned. I had two strictures (narrowing of bile ducts) one in the central bile duct leading to the liver and one in the right lobe of my liver. The main bile duct is like a tree trunk with two branches and basically my trunk and right branch had a stricture. The doctors were able to put in one longer stent to open up both strictures and send me on my way.
Good news, bad news results from the procedure. Good news is they were able to open up my bile ducts and hopefully within a week I will start getting my normal color back and keep my bilirubin levels back to normal. Bad news they couldn't tell me exactly what was causing the blockage (although a tumor is a fairly logical explanation) and I get to go back in three months to repeat the procedure so the stent doesn’t get clogged. A date that I am sure will be circled on my calendar. They also told me that my inflammation probably was not caused by this blockage so that more than likely won’t be solved by this procedure.
Friday I woke up from a great nights sleep from the semi-conscious anesthesia. Even though I felt lousy I knew it was an IV day so I went to my naturopath as usual to load up on some supportive natural medicines. I’m sure they did my body some good, but I didn’t leave feeling any better. I was whipped from the procedure and was having a considerable amount of pain. After sleeping two hours Saturday night Crystal talked me into calling my oncologist for some pain medicine as well as e-mailing Dr. Jacob for some advice. I’m thankful for such a supportive oncologist here even though I’m no longer in his direct care. I’m certain there are many doctors out there that would have respectfully asked for me to look for another oncologist, but Dr. Helft has stuck with me and I know still would do anything to help me. We called him at home on Saturday morning and by 11:30 Crystal was at his house picking up a prescription for oxycodone to ease my pain and allow me to sleep. We also heard from Dr. Jacob who advised me to take another pain medication that I had from a previous trip from Germany. Although I filled the prescription, I took the medicine Dr. Jacob told me to take and the pain was eliminated. I slept great last night and woke up Sunday feeling much better.
We had plans to go to my brother-in-laws parents lake house (the Bovas) today and thankfully I felt well enough to go. Getting out of the house, sitting in the sun, and enjoying the company of family was much needed for my mental status today. I think it has been obvious that the last several weeks have been pretty rough so getting some relief from the pain and keeping my mind off cancer today as much as possible was very healing.
I have a conference call tomorrow with Dr. Jacob because she wants to change some things based on the news I have been sending her. Looks like some added chemo to go along with the five day injections I have coming up of the medication that I took when I got to Germany (not the one that gave me the rash). We also want to talk about what has occurred since I came home along with the continued inflammation I have been having. My oncologist wants me to come in on Tuesday for another ultrasound and blood work to see if there is fluid in my abdomen that needs to be drained. Of course I want to get her advice on that too.
Not having pain today and last night has been a relief. I need a little break both physically and mentally to get back on track. Crystal and I appreciate all of the help we have received this week with meals, lawn mows, watching the kids, messages, etc. I sometimes don’t know how Crystal does it…I have said it before, but I believe this battle can be harder on her than on me. Should be another adventerous week.
More updates to come…
Love,
Tony
Anyway…the semi-conscious anesthesia during the procedure was more like “lights out.” I was actually a little nervous because I do pretty well with anesthesia and tend to not only wake up easily, but remember events fairly well. Whatever man or woman can remember their ERCP I would like to meet them. The procedure is performed while you are lying on your stomach, so the last thing I remember is telling them how uncomfortable I was…noting that I was there because I was having some abdominal pain. “You’ll be comfortable soon” are the last words I heard. The anesthesia was so semi-conscious like that I could barely wake up after the procedure and during the ride home. Maybe they did that to me on purpose for the smart alec remark before I went to sleep.
The procedure went as planned. I had two strictures (narrowing of bile ducts) one in the central bile duct leading to the liver and one in the right lobe of my liver. The main bile duct is like a tree trunk with two branches and basically my trunk and right branch had a stricture. The doctors were able to put in one longer stent to open up both strictures and send me on my way.
Good news, bad news results from the procedure. Good news is they were able to open up my bile ducts and hopefully within a week I will start getting my normal color back and keep my bilirubin levels back to normal. Bad news they couldn't tell me exactly what was causing the blockage (although a tumor is a fairly logical explanation) and I get to go back in three months to repeat the procedure so the stent doesn’t get clogged. A date that I am sure will be circled on my calendar. They also told me that my inflammation probably was not caused by this blockage so that more than likely won’t be solved by this procedure.
Friday I woke up from a great nights sleep from the semi-conscious anesthesia. Even though I felt lousy I knew it was an IV day so I went to my naturopath as usual to load up on some supportive natural medicines. I’m sure they did my body some good, but I didn’t leave feeling any better. I was whipped from the procedure and was having a considerable amount of pain. After sleeping two hours Saturday night Crystal talked me into calling my oncologist for some pain medicine as well as e-mailing Dr. Jacob for some advice. I’m thankful for such a supportive oncologist here even though I’m no longer in his direct care. I’m certain there are many doctors out there that would have respectfully asked for me to look for another oncologist, but Dr. Helft has stuck with me and I know still would do anything to help me. We called him at home on Saturday morning and by 11:30 Crystal was at his house picking up a prescription for oxycodone to ease my pain and allow me to sleep. We also heard from Dr. Jacob who advised me to take another pain medication that I had from a previous trip from Germany. Although I filled the prescription, I took the medicine Dr. Jacob told me to take and the pain was eliminated. I slept great last night and woke up Sunday feeling much better.
We had plans to go to my brother-in-laws parents lake house (the Bovas) today and thankfully I felt well enough to go. Getting out of the house, sitting in the sun, and enjoying the company of family was much needed for my mental status today. I think it has been obvious that the last several weeks have been pretty rough so getting some relief from the pain and keeping my mind off cancer today as much as possible was very healing.
I have a conference call tomorrow with Dr. Jacob because she wants to change some things based on the news I have been sending her. Looks like some added chemo to go along with the five day injections I have coming up of the medication that I took when I got to Germany (not the one that gave me the rash). We also want to talk about what has occurred since I came home along with the continued inflammation I have been having. My oncologist wants me to come in on Tuesday for another ultrasound and blood work to see if there is fluid in my abdomen that needs to be drained. Of course I want to get her advice on that too.
Not having pain today and last night has been a relief. I need a little break both physically and mentally to get back on track. Crystal and I appreciate all of the help we have received this week with meals, lawn mows, watching the kids, messages, etc. I sometimes don’t know how Crystal does it…I have said it before, but I believe this battle can be harder on her than on me. Should be another adventerous week.
More updates to come…
Love,
Tony
Wednesday, June 10, 2009
Two updates in one day...
My visit to the hospital today went pretty much as planned. The ultrasound was harmless, but did show I had a blockage in one of my bile ducts in my liver. We couldn't tell from the ultrasound exactly what was blocking the duct, but it's fairly obvious for anyone following along that it is not something I ate. Not sure if we will be able to tell if the blockage is a tumor that shifted or has gotten bigger, although the information would help my sanity a little.
The ultrasound tech was very helpful and gave us more information than I thought she would. We are used to Dr. Jacob giving us a full narrative during the ultrasound so we asked lots of questions and pointed to things we could identify from experience. The joke never gets old, so I'll tell you that the ultrasound didn't show us that we were having twins. I'll send the ultrasound to Dr. Jacob to see if she has any thoughts because even though I felt like I could identify many things, I am still no expert.
After the ultrasound the tech told us to go home because the IR doctor needed to read the results and then decide if I needed an ERCP procedure. The tech obviously did not realize that I brought my little bull dog, Crystal, with me and that would not work for us. She said the IR doctor wouldn't be back for a few hours and there wasn't much she could do. Crystal asked to speak with another IR doctor (a friend of ours) that is not in the GI area and she complied. Darel came to our room and the ball immediately began to move. He spoke with my oncologist as well as the head of the ERCP unit and although we still were not able to schedule the procedure today, we got it on the schedule tomorrow even though they were booked. I want to thank Darel for his help today...our other back-up plan was calling Dr. Malluccio (my surgeon), but we didn't have to use that option. I need to publicly thank Crystal as well. She continues to amaze me with her assertiveness. I would like to think I have gotten fairly assertive over the years, but I am no where near the level of Crystal. I feel sorry for the techs tomorrow if we start getting to far off schedule.
So tomorrow afternoon they are going to put a tube down my throat and somehow find the blockage and put a stint in the duct to allow bile to flow freely. Apparently I'll be under conscious sedation, which should be enjoyable. You won't remember it (wink, wink) is the explanation I'll get before the procedure. I've been awake before when they have put a tube down my throat and I'm fairly sure I'll remember it, but oh well, I've been through worse.
I can't say that I'm not a little worried about the blockage, but I'm doing my best to stay positive. I do know that the procedure will make me feel better so I am sure that will help my mental status. Besides being a little uncomfortable and tired I'm doing okay. Crystal is doing the best she can, but I know this is hard on her too. We have taken turns picking each other up over the past few days. One day at a time....
More updates to come...
Love,
Tony
The ultrasound tech was very helpful and gave us more information than I thought she would. We are used to Dr. Jacob giving us a full narrative during the ultrasound so we asked lots of questions and pointed to things we could identify from experience. The joke never gets old, so I'll tell you that the ultrasound didn't show us that we were having twins. I'll send the ultrasound to Dr. Jacob to see if she has any thoughts because even though I felt like I could identify many things, I am still no expert.
After the ultrasound the tech told us to go home because the IR doctor needed to read the results and then decide if I needed an ERCP procedure. The tech obviously did not realize that I brought my little bull dog, Crystal, with me and that would not work for us. She said the IR doctor wouldn't be back for a few hours and there wasn't much she could do. Crystal asked to speak with another IR doctor (a friend of ours) that is not in the GI area and she complied. Darel came to our room and the ball immediately began to move. He spoke with my oncologist as well as the head of the ERCP unit and although we still were not able to schedule the procedure today, we got it on the schedule tomorrow even though they were booked. I want to thank Darel for his help today...our other back-up plan was calling Dr. Malluccio (my surgeon), but we didn't have to use that option. I need to publicly thank Crystal as well. She continues to amaze me with her assertiveness. I would like to think I have gotten fairly assertive over the years, but I am no where near the level of Crystal. I feel sorry for the techs tomorrow if we start getting to far off schedule.
So tomorrow afternoon they are going to put a tube down my throat and somehow find the blockage and put a stint in the duct to allow bile to flow freely. Apparently I'll be under conscious sedation, which should be enjoyable. You won't remember it (wink, wink) is the explanation I'll get before the procedure. I've been awake before when they have put a tube down my throat and I'm fairly sure I'll remember it, but oh well, I've been through worse.
I can't say that I'm not a little worried about the blockage, but I'm doing my best to stay positive. I do know that the procedure will make me feel better so I am sure that will help my mental status. Besides being a little uncomfortable and tired I'm doing okay. Crystal is doing the best she can, but I know this is hard on her too. We have taken turns picking each other up over the past few days. One day at a time....
More updates to come...
Love,
Tony
Back to my favorite place...
Yesterday while I was at my naturopath I asked if she could take a urine and blood tests based on how I was feeling and (TMI I know) the color of my urine. I also seemed to be turning a nice shade of yellow, so I figured something is not right.
We won't have complete results until later today, but we do know the bilirubin in my urine is off the charts, which more than likely is caused by some sort of bile duct blockage either from a tumor that has shifted or gotten bigger. Real pick me up news, I know...I've been pretty pumped up since I heard myself. I e-mailed Dr. Jacob yesterday and she told me to get an ultrasound as soon as possible to see what is going on.
So Crystal and I are making the trek to the IU Med Center later this morning to have the ultrasound and whatever procedure needs to be done after that. I am assuming there is some sort of blockage and we'll have to put in a stint to open up the duct that is blocked. I think if we take care of this I'll start really feeling better, so I'm not going to complain to much. Crystal is keeping me grounded in regards to the cancer. All of this doesn't necessarily mean things have gotten worse, it could just be a shift in a tumor. She does a really good job when she sees that look in my eye to not let me get ahead of myself or worry about something we're not certain of yet.
I'm sure there will be more news as this unfolds. Looking forward to another fun day!
More updates to come....
Love,
Tony
We won't have complete results until later today, but we do know the bilirubin in my urine is off the charts, which more than likely is caused by some sort of bile duct blockage either from a tumor that has shifted or gotten bigger. Real pick me up news, I know...I've been pretty pumped up since I heard myself. I e-mailed Dr. Jacob yesterday and she told me to get an ultrasound as soon as possible to see what is going on.
So Crystal and I are making the trek to the IU Med Center later this morning to have the ultrasound and whatever procedure needs to be done after that. I am assuming there is some sort of blockage and we'll have to put in a stint to open up the duct that is blocked. I think if we take care of this I'll start really feeling better, so I'm not going to complain to much. Crystal is keeping me grounded in regards to the cancer. All of this doesn't necessarily mean things have gotten worse, it could just be a shift in a tumor. She does a really good job when she sees that look in my eye to not let me get ahead of myself or worry about something we're not certain of yet.
I'm sure there will be more news as this unfolds. Looking forward to another fun day!
More updates to come....
Love,
Tony
Sunday, June 7, 2009
A better end to a painful week...
I've kept quiet this week mainly because I haven't had very positive news to update. I would imagine looking back at the last several weeks in the journal would be a fairly depressing read. I've dealt with numerous curve balls in the last four years, but this one has taken me awhile to digest. I hope I'm finally coming out of it and ready to move on with more determination than ever. The end of the week has been much better than the beginning and middle so I hope I can continue the trend.
Worst part of the week had been the pain which in turn, has caused the inability to sleep. I keep telling people that I've really pissed off my tumors which is causing quite a bit of turmoil in my organs. I continue to battle inflammation which I'm sure is causing the pain in my chest, but the pain also seems to move around my abdomen and liver as well. I want to think that this is all a good thing, the antibody must be doing something, but honestly can't say that as fact. Still, I'm going to stick with it as I think I know my body pretty well right now...I'm certain something is going on inside so I'll remain positive that this is all working as planned.
I've e-mailed Dr. Jacob almost every day this week. I have to keep my e-mails to her succinct. She always answers, but the responses are always short. I've been trying to fill her in as much as I can on how I feel, but mainly asking for her advice on how to control the pain and inability to sleep this week. I started a natural sleeping pill earlier in the week, but gave up on it once the pain was keeping me awake. I spent a portion of every night on the couch this week, but I can report that the last two nights have been much better and we may have found a combination that has helped ease the pain.
I'm still really tired, but at least the pain is tolerable and I (knock on wood) have been able to sleep the past couple of nights. I'm not always the most patient person when it comes to getting through the "rough" days but I keep reminding myself that I've only been home two weeks. I'm still working and going to the kids events. I'm cooking as much as I can in order to "eat right" and getting my regular IVs. Crystal and the kids are hanging in there as much as possible as many of the other moments this week with their husband and father have been on the couch.
There have been many reminders to me this week that having faith continues to be a good lesson for me. Every time I get worried or have concerns all I need to do is have the patience that everything will work out for the best. I remind myself to slow down, release the concerns and somehow, someway, what needs to happen will happen. Maybe it is luck or prayers or determination or something else, but whatever it is, over the past four and a half years I know if I remain patient everything always works out the way it is supposed to. I am certain this chapter in my journey will not be any different. So far some of the concerns I've already had are working themselves out.
I'm trying to fill our calendar for the summer in order to enjoy the company of as many of our wonderful family and friends as we can. Today is one of those days where we have nothing going on except for another tee ball game. Crystal and I will try to catch up around the house today and get ready for hopefully, the start of a good week and more of a "normal" life.
More updates to come...
Love,
Tony
Worst part of the week had been the pain which in turn, has caused the inability to sleep. I keep telling people that I've really pissed off my tumors which is causing quite a bit of turmoil in my organs. I continue to battle inflammation which I'm sure is causing the pain in my chest, but the pain also seems to move around my abdomen and liver as well. I want to think that this is all a good thing, the antibody must be doing something, but honestly can't say that as fact. Still, I'm going to stick with it as I think I know my body pretty well right now...I'm certain something is going on inside so I'll remain positive that this is all working as planned.
I've e-mailed Dr. Jacob almost every day this week. I have to keep my e-mails to her succinct. She always answers, but the responses are always short. I've been trying to fill her in as much as I can on how I feel, but mainly asking for her advice on how to control the pain and inability to sleep this week. I started a natural sleeping pill earlier in the week, but gave up on it once the pain was keeping me awake. I spent a portion of every night on the couch this week, but I can report that the last two nights have been much better and we may have found a combination that has helped ease the pain.
I'm still really tired, but at least the pain is tolerable and I (knock on wood) have been able to sleep the past couple of nights. I'm not always the most patient person when it comes to getting through the "rough" days but I keep reminding myself that I've only been home two weeks. I'm still working and going to the kids events. I'm cooking as much as I can in order to "eat right" and getting my regular IVs. Crystal and the kids are hanging in there as much as possible as many of the other moments this week with their husband and father have been on the couch.
There have been many reminders to me this week that having faith continues to be a good lesson for me. Every time I get worried or have concerns all I need to do is have the patience that everything will work out for the best. I remind myself to slow down, release the concerns and somehow, someway, what needs to happen will happen. Maybe it is luck or prayers or determination or something else, but whatever it is, over the past four and a half years I know if I remain patient everything always works out the way it is supposed to. I am certain this chapter in my journey will not be any different. So far some of the concerns I've already had are working themselves out.
I'm trying to fill our calendar for the summer in order to enjoy the company of as many of our wonderful family and friends as we can. Today is one of those days where we have nothing going on except for another tee ball game. Crystal and I will try to catch up around the house today and get ready for hopefully, the start of a good week and more of a "normal" life.
More updates to come...
Love,
Tony
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