I've faced many difficult decisions in my life, but over the past two weeks I have been presented with many different scenarios for my next steps and I can honestly say this decision has been one of the most difficult decisions I have ever had to make. I have learned over the past four years that once I make a decision I don't look back. I feel like whatever is supposed to happen--will happen. I pray every night...asking the Holy Spirit for guidance and try my best to "listen" and hope for the best.
After speaking with the clinic in Arizona today, the clinic from Mexico yesterday and finally the doctor from Germany today--my decision is another adventure overseas. We're heading to Germany. I had some dialogue te past two days via e-mail with the doctor from Germany, but today Crystal and I were able to speak with her. We felt like we received a fairly good overview of what she would be doing. More than "call me when you get here"--which is what we had to go on when we went to Italy to see Dr. Simoncini, but much less information than if we were going to Arizona or Mexico.
Here is what I know (or think I know)...she is going to send me some vials for me to draw blood. I'll fill those vials Monday and ship them overnight to a lab in Greece. This lab will take my blood and do a chemosensitivity test. This test will tell the doctor what type of chemos and antibodies would react best (and not so good) with my tumors. She thinks she will have the results by Thursday next week. Once she has the results she can begin treatment.
Treatment will begin in a hospital in Frankfurt. They will inject chemo to my tumors (I'm a tad unclear if it will only be liver directed or if they will try to get to my lungs too), do an embolism procedure where the smaller veins will be shut off for 6-8 hours so the chemo can not "escape". Once I stabilize I will be sent to a clinic near Munich to begin immunotherapy, vaccination therapy and probably more systemic chemo. The belief in Germany is to use smaller amounts of chemo while supporting your body through immunotherapy. They hope to have little to no side effects but get results at the same time. I'm sure I'll be learning as I go.
The doctor is super nice and super honest about my situation. She knows there are some pros and cons with my situation, will not promise anything (which I respect and would expect), but also feels like there could be some very effective treatments for me. She was able to poke some holes in some of my previous treatments and explain why she did not think they were effective. I'm still a little unclear on where I will be and what to expect from the clinic. I am supposed to receive that information from her tomorrow.
We originally told her we would be there next Thursday morning, but after sitting down tonight with Crystal, we are considering moving it back to the following Monday. Makes more sense from a travel perspective and also starts a procedure on Monday so if I have any type of complications I'm not worried about doctors gone for the weekend. We'll nail down exact plans in the next few days.
Obviously feels good to make a decision, but this journey continues to be a "leap of faith." I trust that I am being led to this doctor for a reason and will have to trust her treatment methods and protocols. I continue to live one day at a time. Today was another good day....I'll worry about tomorrow tomorrow.
More updates to come...
Tony
Thursday, September 25, 2008
Tuesday, September 23, 2008
Not much to update...
Just a quick note tonight. I have had many people ask me what I'm doing next and I am yet to have an answer. Basically I'm waiting to hear from Germany. I'm not a man of patience in this instance, so have started pushing the issue with the doctor there.
I have been "accepted" into the Mexico program so I know I can go there if need be. I can do radiation beads at the IU Med Center that go directly into my liver. The non-invasive procedure that was explained to me has now become I can't be around anyone for three days and probably can't fly for over a week after these beads are inserted. Apparently I'll be glowing from the radiation---I'm thinking about saving that treatment for the Holidays so I can blend in with all of the holiday lights. So much for treatment that doesn't effect the rest of your body. Unfortunately I'm still considering it as an option, but want to hear from Germany first.
I also heard back from Dr. Simoncini. He basically told me that what I did was not enough regarding the sodium bicarb. He is convinced I need a higher dosage each day and need to be on sodium bicarb longer. I'm considering doing venous sodium bicarb while I'm waiting to make a decision---can't hurt right?
So everyone is now caught up.
Also went to the service tonight for Greg Cavanaugh. As much as I thought I would be ok with his passing (because I know he is ok) it was very difficult for me. Obviously it saddens me to see Greg go and leave his family and friends behind, but it was a difficult test to remember to live life in the moment. All those fears and "what ifs" challenged me tonight. Like Greg, I am dealing with a serious situation and like Greg, want to beat it. I know he continues to pull for me, as I did for him. Please continue to keep his family in your prayers.
I'll give you more updates as they come...
Love,
Tony
I have been "accepted" into the Mexico program so I know I can go there if need be. I can do radiation beads at the IU Med Center that go directly into my liver. The non-invasive procedure that was explained to me has now become I can't be around anyone for three days and probably can't fly for over a week after these beads are inserted. Apparently I'll be glowing from the radiation---I'm thinking about saving that treatment for the Holidays so I can blend in with all of the holiday lights. So much for treatment that doesn't effect the rest of your body. Unfortunately I'm still considering it as an option, but want to hear from Germany first.
I also heard back from Dr. Simoncini. He basically told me that what I did was not enough regarding the sodium bicarb. He is convinced I need a higher dosage each day and need to be on sodium bicarb longer. I'm considering doing venous sodium bicarb while I'm waiting to make a decision---can't hurt right?
So everyone is now caught up.
Also went to the service tonight for Greg Cavanaugh. As much as I thought I would be ok with his passing (because I know he is ok) it was very difficult for me. Obviously it saddens me to see Greg go and leave his family and friends behind, but it was a difficult test to remember to live life in the moment. All those fears and "what ifs" challenged me tonight. Like Greg, I am dealing with a serious situation and like Greg, want to beat it. I know he continues to pull for me, as I did for him. Please continue to keep his family in your prayers.
I'll give you more updates as they come...
Love,
Tony
Friday, September 19, 2008
I think I found my #1 along with another sad day...
As always I do my grieving from a disappointing scan for a day or two and tend to bounce back with renewed energy. This one has not been to different besides I think my grieving lasted a third day this time around. I'm not sure if that was the case because of the "news" or because of the burden I feel with the next decision that needs to be made.
I know I still have some options, but at the same time I also know it could be one of the most important decisions I've ever had to make. I won't go through the details of each clinic, but thought I had my decision down to a clinic in Chicago, Phoenix, or Mexico. I was back and forth between Mexico and Arizona, both had their positives and both had their negatives. Honestly though, I was having a difficult time comparing both apples to apples and really struggling emotionally with a decision. Enter Germany.
Some of you may know that I contacted a doctor in Germany several weeks ago. I was a little turned off by the response from the doctor as it seemed to me that they were very pro chemo. As most of you know, I'm not very pro-chemo, plus I was thinking if I did go back to chemo I could do it here in the States.
I ran into Tom Shine (executive management at SLD of the Adidas Group) on Thursday morning. He was the one who referred me to this clinic in Germany. He had some friends that went to the clinic and were having success with their treatment. He put me in touch with one of those friends that went to the clinic so I could get a better understanding of the protocols. After talking to his friend and researching the clinic I'm 99% sure that is where I need to be..if they will take me. I've e-mailed the doctor again and have asked if I am a candidate for the program. If so, I'm off to Germany. We'll see what happens...maybe off on another adventure. I'll provide details once I'm "accepted" to their program.
In other news...
In many ways when someone is diagnosed with cancer you automatically are initiated into a cancer fraternity. You share stories and experiences, meet families, and become friends with people who are experiencing the same emotions and pains that you are going through. I've lost two members of that fraternity over the past two years, both from colon cancer, Buddy McAtee and Meredith Rankin. Yesterday we lost one more.
Greg Cavanaugh lost his battle with small cell lung cancer. We met a year ago at my naturopath and have remained close in our "fraternity" over the past year. He will be deeply missed by his wife Julie, his three children (all under the age of 6), and all of his friends and family whom he touched in his life (including myself). I would ask that all of you reading this would take a moment and wish his family peace, love and forgiveness during their time of sorrow. We love you Greg.
Tony
I know I still have some options, but at the same time I also know it could be one of the most important decisions I've ever had to make. I won't go through the details of each clinic, but thought I had my decision down to a clinic in Chicago, Phoenix, or Mexico. I was back and forth between Mexico and Arizona, both had their positives and both had their negatives. Honestly though, I was having a difficult time comparing both apples to apples and really struggling emotionally with a decision. Enter Germany.
Some of you may know that I contacted a doctor in Germany several weeks ago. I was a little turned off by the response from the doctor as it seemed to me that they were very pro chemo. As most of you know, I'm not very pro-chemo, plus I was thinking if I did go back to chemo I could do it here in the States.
I ran into Tom Shine (executive management at SLD of the Adidas Group) on Thursday morning. He was the one who referred me to this clinic in Germany. He had some friends that went to the clinic and were having success with their treatment. He put me in touch with one of those friends that went to the clinic so I could get a better understanding of the protocols. After talking to his friend and researching the clinic I'm 99% sure that is where I need to be..if they will take me. I've e-mailed the doctor again and have asked if I am a candidate for the program. If so, I'm off to Germany. We'll see what happens...maybe off on another adventure. I'll provide details once I'm "accepted" to their program.
In other news...
In many ways when someone is diagnosed with cancer you automatically are initiated into a cancer fraternity. You share stories and experiences, meet families, and become friends with people who are experiencing the same emotions and pains that you are going through. I've lost two members of that fraternity over the past two years, both from colon cancer, Buddy McAtee and Meredith Rankin. Yesterday we lost one more.
Greg Cavanaugh lost his battle with small cell lung cancer. We met a year ago at my naturopath and have remained close in our "fraternity" over the past year. He will be deeply missed by his wife Julie, his three children (all under the age of 6), and all of his friends and family whom he touched in his life (including myself). I would ask that all of you reading this would take a moment and wish his family peace, love and forgiveness during their time of sorrow. We love you Greg.
Tony
Tuesday, September 16, 2008
The results are in.
In one of my first jobs out of college some of us would take turns giving "talks" to 20-25 reps. One of the first "talks" I ever gave was on positive attitude. I remember asking the reps what kind of day they would have if they woke up 1) it was raining 2) stubbed their toe on the shower 3) burnt their breakfast and dribbled juice on their shirt and 4) got into a traffic jam causing them to be 30 minutes late from work. I think it is safe to say that most of us would consider this a "bad day", possibly be grumpy from the time we got to work, and probably even more possible that we would be grumpy the rest of the day depending on what other "bad" things occurred the remainder of the day. Positive or negative attitude that day? Hmmm.
Then I remember saying to take the same scenario and add that your spouse or boyfriend/girlfriend leave you a note in your car telling you how much they love and appreciate you. You get a call on your cell (during the traffic jam) from a friend you haven't heard from in years and have a great talk "catching up". A co-worker lets you borrow their umbrella so you don't get wet walking into work and the receptionist compliments you on how nice you look that day (except for the juice on your shirt). And to top it off, you get an unexpected small bonus for a recent job well done at work. Now what kind of day are you going to have--it's still raining, you still stubbed your toe, burnt breakfast and were late for work. All of those things will be forgotten and I would venture to say this would be considered a "good day" and you would go through the day with a positive attitude and smile on your face.
Then I would ramble on and on while watching people doze off and finally would conclude saying something about how we allow the events in our lives dictate our attitude. No matter what kind of day we are having, we choose how we are going to live that day. I have tried over the years to practice what I preach, live the day as it comes, and stay positive no matter what comes my way. I think I would give myself a good grade overall if I had to grade myself. I would by no means give myself the positive attitude of the year award, but I would say I do a pretty good job.
So my day started today without rain or a stubbed toe. I didn't burn breakfast or spill juice on my shirt. I did however get a call from a friend, my oncologist, Dr. Helft. We did have a long talk catching up on where I stand. Unfortunately his news was not good. Basically all of my tumors have grown--in the liver and in the lungs. They also found a new spot in a lymph node in my chest. I'm not sure I can describe my disappointment nor how saddened I am about the news. I think all of you following my story knew how important this scan was for me. For some reason the results I was hoping for (no change or reduction in tumor growth) was not meant to be.
As always my plan right now is to take a day or two to get through the emotions, make some calls to doctors, clinics, etc. and talk through this with Crystal and my family. Then I bounce back and start swinging again.
I know I have some options and will outline those in the days to come. As I've said before and will continue to say, I'm not giving up on the sodium bicarb but I also don't have time to waste trying to continue to sell this idea to my doctors here. My naturopath may have discovered why I was having pain during my sodium bicarb treatments so we will be quickly investigating her findings and how to counteract that pain in the future. Time is becoming an important factor and I obviously need to get the growth stopped as quickly as possible.
So did I have a "bad day"? Considering that we single handedly caused the stock market to rebound at the end of the day today from the increase in Kleenex stock, I don't think you can call it a bad day. I've still found time to smile, laugh and enjoy the "little things" in life. I still tell myself that I feel great, am not symptomatic and can / will beat this. Another obstacle I was hoping I didn't have to face, but just another event that I would not allow to "ruin" this day.
More updates as they unfold...
Love,
Tony
Then I remember saying to take the same scenario and add that your spouse or boyfriend/girlfriend leave you a note in your car telling you how much they love and appreciate you. You get a call on your cell (during the traffic jam) from a friend you haven't heard from in years and have a great talk "catching up". A co-worker lets you borrow their umbrella so you don't get wet walking into work and the receptionist compliments you on how nice you look that day (except for the juice on your shirt). And to top it off, you get an unexpected small bonus for a recent job well done at work. Now what kind of day are you going to have--it's still raining, you still stubbed your toe, burnt breakfast and were late for work. All of those things will be forgotten and I would venture to say this would be considered a "good day" and you would go through the day with a positive attitude and smile on your face.
Then I would ramble on and on while watching people doze off and finally would conclude saying something about how we allow the events in our lives dictate our attitude. No matter what kind of day we are having, we choose how we are going to live that day. I have tried over the years to practice what I preach, live the day as it comes, and stay positive no matter what comes my way. I think I would give myself a good grade overall if I had to grade myself. I would by no means give myself the positive attitude of the year award, but I would say I do a pretty good job.
So my day started today without rain or a stubbed toe. I didn't burn breakfast or spill juice on my shirt. I did however get a call from a friend, my oncologist, Dr. Helft. We did have a long talk catching up on where I stand. Unfortunately his news was not good. Basically all of my tumors have grown--in the liver and in the lungs. They also found a new spot in a lymph node in my chest. I'm not sure I can describe my disappointment nor how saddened I am about the news. I think all of you following my story knew how important this scan was for me. For some reason the results I was hoping for (no change or reduction in tumor growth) was not meant to be.
As always my plan right now is to take a day or two to get through the emotions, make some calls to doctors, clinics, etc. and talk through this with Crystal and my family. Then I bounce back and start swinging again.
I know I have some options and will outline those in the days to come. As I've said before and will continue to say, I'm not giving up on the sodium bicarb but I also don't have time to waste trying to continue to sell this idea to my doctors here. My naturopath may have discovered why I was having pain during my sodium bicarb treatments so we will be quickly investigating her findings and how to counteract that pain in the future. Time is becoming an important factor and I obviously need to get the growth stopped as quickly as possible.
So did I have a "bad day"? Considering that we single handedly caused the stock market to rebound at the end of the day today from the increase in Kleenex stock, I don't think you can call it a bad day. I've still found time to smile, laugh and enjoy the "little things" in life. I still tell myself that I feel great, am not symptomatic and can / will beat this. Another obstacle I was hoping I didn't have to face, but just another event that I would not allow to "ruin" this day.
More updates as they unfold...
Love,
Tony
Monday, September 15, 2008
Waiting patiently...
I've been a little quite lately, but honestly there has not been much to update. Since getting the catheter out I have tried to get back to some normalcy. I have some aches and pains here and there and my right leg is remembering how to function again. I'm not quite up to running drills, but I can at least do stairs now without using a railing. Each day gets better...dare I say I'm ready for some more :).
I've had many people ask me today about my scan results, but I have not heard from the doctor yet. I could have "pushed" the issue today by calling the doctor, but honestly I needed to get some work done today. I've probably been through close to a dozen of these scans now in the past few years and I know good news or bad it's very hard to focus the rest of the day after you get the news. I know the results are not changing no matter when I get them.
I know for sure I will get them tomorrow. I will send an update with the news. Thanks for all the continued support.
Love,
Tony
I've had many people ask me today about my scan results, but I have not heard from the doctor yet. I could have "pushed" the issue today by calling the doctor, but honestly I needed to get some work done today. I've probably been through close to a dozen of these scans now in the past few years and I know good news or bad it's very hard to focus the rest of the day after you get the news. I know the results are not changing no matter when I get them.
I know for sure I will get them tomorrow. I will send an update with the news. Thanks for all the continued support.
Love,
Tony
Tuesday, September 9, 2008
Just another day...
Woke up in my own bed this morning, showered, ate breakfast, and went to work. Although that is a normal daily routine, it felt a little awkward after 12 days in bed. I'm a little tired tonight since the hospital decided to keep me until midnight for "observation", but wanted to at least give a quick update.
I did go to my naturopath today and we pushed sodium bicarb through my venous port in my chest. I wanted to see if I would have any reaction and I didn't. Not sure if going through the venous port is effective, but I figured it couldn't hurt. Dr. Simoncini did say I could use the port and it may help my lungs.
So they next step is a scan on Friday. Not sure when I will get the results. Could be Friday, Saturday or Monday. My oncologist is going to call me when he gets the results. We'll see what happens.
Big week...stay tuned.
Tony
I did go to my naturopath today and we pushed sodium bicarb through my venous port in my chest. I wanted to see if I would have any reaction and I didn't. Not sure if going through the venous port is effective, but I figured it couldn't hurt. Dr. Simoncini did say I could use the port and it may help my lungs.
So they next step is a scan on Friday. Not sure when I will get the results. Could be Friday, Saturday or Monday. My oncologist is going to call me when he gets the results. We'll see what happens.
Big week...stay tuned.
Tony
Monday, September 8, 2008
A day off, but (WARNING) time to get on my soap box…
As scheduled, I took the day off Saturday to give my body a chance to rest. I woke up Sunday to an e-mail from my friend Odilia in the Netherlands. She sent me a link to watch Dr. Simoncini’s presentation in LA at a Cancer Convention this past week. I watched this and the “Stand Up to Cancer” program all the networks aired on Friday night.
First Dr. Simoncini’s presentation… Every time I hear him he gives me more hope. Even after lying in bed for almost two weeks, if I don’t get the results I want, I will still believe in what he is doing. What he says is so logical and the testimonials he has are amazing. Most of the people in his testimonials had very severe cancer and had long treatments with sodium bicarb (up to 9 months for one patient), but all had the same result—complete cure. I don’t know what else is in store for me with sodium bicarb, but I do know I won’t quit trying to use his methods.
On the other side of the fence was the “Stand Up to Cancer” program. Although I applaud the networks for airing a program for awareness, I also get a little angry that so many “powerful” people are so blinded by orthodox cancer treatment and research. Here you have Dr. Simoncini who is curing people on a regular basis and no one seems to know about him. I know it’s not that most people don’t care or actually want a cure, but call me crazy, we have all been trained to believe this is an incurable disease and I believe that’s want big government, big pharmas want.
I know statistics are skewed to help show that cancer rates are declining, but that is not true. Numbers and “causes of death” can be altered to make the general public believe anything you want them to believe. I was curious to see what the networks were “allowed” to show Friday. Why? Here’s an excerpt from some of my research:
“ as this article is being written, General Electric owns 80% of the NBC network. General Electric also owns 14 major NBC affiliates. General Electric's partner, Telemundo (which owns the other 20% of NBC), owns 16 major television stations. By the way, GE now owns Telemundo.
Why is this significant? General Electric has a major division called: "GE Healthcare." This division includes "GE Medical Systems Information Technologies," "GE Healthcare Cintricity Pharmacy" (which has sold about 6 billion prescriptions) and other orthodox health related organizations.
All of these organizations, and many more, are heavily involved in orthodox medicine. Thus, the same company, General Electric, has major ownership in both the media and orthodox medicine.
CBS has a longstanding advertising policy that prohibits the sale of advertising time for the advocacy of viewpoints on controversial issues of public importance. In other words, they can censor any advertisement they want.”
Did you know that the pharmaceutical companies spend $3 Billion per year on advertising? Did you know that 42% of our US Senators own stock in the pharmaceutical industry? That’s why I wondered what they would show on tv.
I hope I’m wrong, but I’m a cancer patient who believes so strongly that there is a cure, but feels like the truth is not always revealed or “they” don’t want to know the truth. I could go on and on, but my point is that the way we go about “curing” cancer in America is so illogical to me. I agree we have some drugs that can be effective, but there are so many more options that are available too that are not even considered. Obviously I turn back to Dr. Simoncini as an example. If he has cured one patient from cancer why would you not consider looking into his treatment for all cancer patients. He’s been doing this for years now with proven results and not only did they not look into his methods, but they banned him from practicing medicine. Is it just me or does that make no sense at all? When the US is willing to consider treatments like Dr. Simoncini’s immediately, then they prove to me that we are willing to Stand Up to Cancer. Until then, it’s more of the same.
As for me…I’m getting my catheter out Monday. I think the disappointment has hit me, especially after seeing Dr. Simoncini’s presentation. I’m having pain in my chest and throat when I push the sodium bicarb so it’s time for me to stop. I made it 12 days in bed, 7 good treatments of sodium bicarb, and 2 days of minimal amounts. My surgeon sent me an e-mail saying she is crossing her fingers for me and that I should remember I still have other options. She knows how much I want this. I’ll need a day to recover physically and emotionally from this and then go on to the next step which will be a scan. Should be an eventful and anxious week.
More updates to come…
Love,
Tony
First Dr. Simoncini’s presentation… Every time I hear him he gives me more hope. Even after lying in bed for almost two weeks, if I don’t get the results I want, I will still believe in what he is doing. What he says is so logical and the testimonials he has are amazing. Most of the people in his testimonials had very severe cancer and had long treatments with sodium bicarb (up to 9 months for one patient), but all had the same result—complete cure. I don’t know what else is in store for me with sodium bicarb, but I do know I won’t quit trying to use his methods.
On the other side of the fence was the “Stand Up to Cancer” program. Although I applaud the networks for airing a program for awareness, I also get a little angry that so many “powerful” people are so blinded by orthodox cancer treatment and research. Here you have Dr. Simoncini who is curing people on a regular basis and no one seems to know about him. I know it’s not that most people don’t care or actually want a cure, but call me crazy, we have all been trained to believe this is an incurable disease and I believe that’s want big government, big pharmas want.
I know statistics are skewed to help show that cancer rates are declining, but that is not true. Numbers and “causes of death” can be altered to make the general public believe anything you want them to believe. I was curious to see what the networks were “allowed” to show Friday. Why? Here’s an excerpt from some of my research:
“ as this article is being written, General Electric owns 80% of the NBC network. General Electric also owns 14 major NBC affiliates. General Electric's partner, Telemundo (which owns the other 20% of NBC), owns 16 major television stations. By the way, GE now owns Telemundo.
Why is this significant? General Electric has a major division called: "GE Healthcare." This division includes "GE Medical Systems Information Technologies," "GE Healthcare Cintricity Pharmacy" (which has sold about 6 billion prescriptions) and other orthodox health related organizations.
All of these organizations, and many more, are heavily involved in orthodox medicine. Thus, the same company, General Electric, has major ownership in both the media and orthodox medicine.
CBS has a longstanding advertising policy that prohibits the sale of advertising time for the advocacy of viewpoints on controversial issues of public importance. In other words, they can censor any advertisement they want.”
Did you know that the pharmaceutical companies spend $3 Billion per year on advertising? Did you know that 42% of our US Senators own stock in the pharmaceutical industry? That’s why I wondered what they would show on tv.
I hope I’m wrong, but I’m a cancer patient who believes so strongly that there is a cure, but feels like the truth is not always revealed or “they” don’t want to know the truth. I could go on and on, but my point is that the way we go about “curing” cancer in America is so illogical to me. I agree we have some drugs that can be effective, but there are so many more options that are available too that are not even considered. Obviously I turn back to Dr. Simoncini as an example. If he has cured one patient from cancer why would you not consider looking into his treatment for all cancer patients. He’s been doing this for years now with proven results and not only did they not look into his methods, but they banned him from practicing medicine. Is it just me or does that make no sense at all? When the US is willing to consider treatments like Dr. Simoncini’s immediately, then they prove to me that we are willing to Stand Up to Cancer. Until then, it’s more of the same.
As for me…I’m getting my catheter out Monday. I think the disappointment has hit me, especially after seeing Dr. Simoncini’s presentation. I’m having pain in my chest and throat when I push the sodium bicarb so it’s time for me to stop. I made it 12 days in bed, 7 good treatments of sodium bicarb, and 2 days of minimal amounts. My surgeon sent me an e-mail saying she is crossing her fingers for me and that I should remember I still have other options. She knows how much I want this. I’ll need a day to recover physically and emotionally from this and then go on to the next step which will be a scan. Should be an eventful and anxious week.
More updates to come…
Love,
Tony
Saturday, September 6, 2008
Half way home???
We're starting day 10 and I have decided to take a day off from sodium bicarb. Although I hate to "waste" a day in bed with the catheter I also feel like it's important to give my body some chance to stabilize.
I obviously didn't go to the IU Med Center yesterday...I'm waiting for the hospital police to come get me any minute now. We did try to push sodium bicarb yesterday, but the pain returned. In all honesty I probably could have forced it in, although it would have taken several hours I'm sure. Instead, I decided to stop after about 100mls and call it a day. We will take a break today and see what Sunday brings. Same old story...if there is pain, maybe it's time to call it quits, if not I'll continue into next week day by day.
My cousin Shane and his wife Christi are coming over from Cincinnati so looking forward to the day today. I have the NFL tomorrow to keep me company, so don't think the weekend will be to bad. Without doubt I will be pulling the plug next Friday--if I get there. I feel like if I make it to Friday I will feel comfortable that I gave sodium bicarb a good run. My next scan is not scheduled, but I will have one soon after the catheter is pulled.
More updates as they come...
Love,
Tony
I obviously didn't go to the IU Med Center yesterday...I'm waiting for the hospital police to come get me any minute now. We did try to push sodium bicarb yesterday, but the pain returned. In all honesty I probably could have forced it in, although it would have taken several hours I'm sure. Instead, I decided to stop after about 100mls and call it a day. We will take a break today and see what Sunday brings. Same old story...if there is pain, maybe it's time to call it quits, if not I'll continue into next week day by day.
My cousin Shane and his wife Christi are coming over from Cincinnati so looking forward to the day today. I have the NFL tomorrow to keep me company, so don't think the weekend will be to bad. Without doubt I will be pulling the plug next Friday--if I get there. I feel like if I make it to Friday I will feel comfortable that I gave sodium bicarb a good run. My next scan is not scheduled, but I will have one soon after the catheter is pulled.
More updates as they come...
Love,
Tony
Thursday, September 4, 2008
Quick update on Christmas Day...
We have two Christmas Days in the Feller household. The first (and the most important--winning by a hair) is December 25th. The second Christmas is the start of the NFL season. The day came today and as usual, I was very antsy until the start of the 7:00 kick-off. Day 8 was one of the longest days in bed yet.
My plan remained the same....push sodium bicarb early afternoon. If I had pain...we stop and make the doctors appointment tomorrow to get the catheter out. No pain...I would continue tomorrow with the same plan as today. Verdict today was another day of no pain. We only did 250mls, but we got it in successfully.
Decision time comes tomorrow. The IU Med Center is expecting to see me tomorrow. What they don't know is I'm not coming back unless my pain returns. The question then becomes; do I continue treatment until the pain returns, do I take a couple days off and continue treatment all next week, etc. I feel like my body needs a chance to "flush" and get back to normal, but at the same time I hate to sit in bed for a day or two without doing any treatment. I plan to call my naturopath tomorrow to see if she has any suggestions. Right now I'm thinking about pushing more than 250ml tomorrow, take two days off, and go again next week (day by day of course). Dr. Simoncini wanted me to do two cycles (8 on, 6 off, 8 on). If I do my plan it would be (7 on, 2 off, 5 on)--abbreviated I know, but I would feel like I gave this a good shot.
We'll see...if you don't know by now, things can change in a hurry around here. I'll continue to take a day at a time and see what happens.
Love,
Tony
My plan remained the same....push sodium bicarb early afternoon. If I had pain...we stop and make the doctors appointment tomorrow to get the catheter out. No pain...I would continue tomorrow with the same plan as today. Verdict today was another day of no pain. We only did 250mls, but we got it in successfully.
Decision time comes tomorrow. The IU Med Center is expecting to see me tomorrow. What they don't know is I'm not coming back unless my pain returns. The question then becomes; do I continue treatment until the pain returns, do I take a couple days off and continue treatment all next week, etc. I feel like my body needs a chance to "flush" and get back to normal, but at the same time I hate to sit in bed for a day or two without doing any treatment. I plan to call my naturopath tomorrow to see if she has any suggestions. Right now I'm thinking about pushing more than 250ml tomorrow, take two days off, and go again next week (day by day of course). Dr. Simoncini wanted me to do two cycles (8 on, 6 off, 8 on). If I do my plan it would be (7 on, 2 off, 5 on)--abbreviated I know, but I would feel like I gave this a good shot.
We'll see...if you don't know by now, things can change in a hurry around here. I'll continue to take a day at a time and see what happens.
Love,
Tony
Wednesday, September 3, 2008
Always something different...
Before I begin tonight I have a couple announcements:
1) I have a Fraternity brother in Texas whose wife has a baby clothes business. He and his wife have offered to give 25% of the sales in September to the Feller Treatment fund. I'm not much of a marketer, but really appreciate what they are doing and want to announce it here on my "blog" and my website. The website is below, if you have a baby, want a baby, thinking about a baby, saw a baby, etc. maybe you'll find something of interest:
http://www.pimathreads.com/
2) I have had many people asking what they could do to help. If there is anyone out there with some computer skills I could use your assistance. I'm trying to get a couple of videos on the website via YouTube or GoogleVideo and can't seem to make it happen. The videos are from the fundraiser which many of you attended and are very good. I just want to share them with everyone. Send me an e-mail or call me if you think you can help.
Ok...now my update.
First I want to clarify that the picture on this journal of me in bed was my wonderful wife's idea. My friends the Petruska's asked if my pillow was Mickey Mouse or race cars. In case anyone else is wondering it is a "city vehicle" (police cars, taxi, ambulance, etc.) pillow, but I like the idea of race cars to go with my fast pace lifestyle right now.
Last night I spoke with my naturopath about my pain. Long story short her recommendation was if I'm having pain--stop. There can be some serious issues with over alkalizing your body, plus she's always been one to talk some sense in to me when I attempt to tolerate pain. She always reminds me that pain is the body's way of telling me something. Today my day started with a call from my doctor's nurse basically saying they have no idea why I am having pain. Of course the prognosis was that it could be a variety of things. I got off the phone knowing I had made no progress. Started reading my e-mails and had an e-mail from the lady in Florida that gave me Dr. Simoncini's phone number. She had stopped the sodium bicarb treatment because she was getting "fibrosis" in her breast (she has breast cancer). I'm not exactly sure what her definition of fibrosis is, but from what I know fibrosis isn't a good thing. I haven't heard from her in almost three months and out of the blue I get an e-mail from her about an issue she is having with sodium bicarb.
I'm sure I've said it a million times, but I don't believe in coincidences. I looked at my aunt Betty and said "this is as close to a slap in the face as I'm going to get that I need to stop this." I decided that I'm going to do a treatment today, but if I have any pain I'll stop and get the catheter pulled out tomorrow. I didn't really have a feeling of disappointment...for some reason I had a sense of calm about the whole situation.
So aunt Betty mixed my bag. I started the injection and.......no pain after 40mls, 80mls, 120 mls, etc. until 250 mls. Go figure. So back to square one. Taking a day at a time. If tomorrow goes well we'll see what happens Friday and so on and so on. One thing I know for sure is each day is always something different.
Day 7 almost in the books...we'll see what tomorrow brings.
Love,
Tony
1) I have a Fraternity brother in Texas whose wife has a baby clothes business. He and his wife have offered to give 25% of the sales in September to the Feller Treatment fund. I'm not much of a marketer, but really appreciate what they are doing and want to announce it here on my "blog" and my website. The website is below, if you have a baby, want a baby, thinking about a baby, saw a baby, etc. maybe you'll find something of interest:
http://www.pimathreads.com/
2) I have had many people asking what they could do to help. If there is anyone out there with some computer skills I could use your assistance. I'm trying to get a couple of videos on the website via YouTube or GoogleVideo and can't seem to make it happen. The videos are from the fundraiser which many of you attended and are very good. I just want to share them with everyone. Send me an e-mail or call me if you think you can help.
Ok...now my update.
First I want to clarify that the picture on this journal of me in bed was my wonderful wife's idea. My friends the Petruska's asked if my pillow was Mickey Mouse or race cars. In case anyone else is wondering it is a "city vehicle" (police cars, taxi, ambulance, etc.) pillow, but I like the idea of race cars to go with my fast pace lifestyle right now.
Last night I spoke with my naturopath about my pain. Long story short her recommendation was if I'm having pain--stop. There can be some serious issues with over alkalizing your body, plus she's always been one to talk some sense in to me when I attempt to tolerate pain. She always reminds me that pain is the body's way of telling me something. Today my day started with a call from my doctor's nurse basically saying they have no idea why I am having pain. Of course the prognosis was that it could be a variety of things. I got off the phone knowing I had made no progress. Started reading my e-mails and had an e-mail from the lady in Florida that gave me Dr. Simoncini's phone number. She had stopped the sodium bicarb treatment because she was getting "fibrosis" in her breast (she has breast cancer). I'm not exactly sure what her definition of fibrosis is, but from what I know fibrosis isn't a good thing. I haven't heard from her in almost three months and out of the blue I get an e-mail from her about an issue she is having with sodium bicarb.
I'm sure I've said it a million times, but I don't believe in coincidences. I looked at my aunt Betty and said "this is as close to a slap in the face as I'm going to get that I need to stop this." I decided that I'm going to do a treatment today, but if I have any pain I'll stop and get the catheter pulled out tomorrow. I didn't really have a feeling of disappointment...for some reason I had a sense of calm about the whole situation.
So aunt Betty mixed my bag. I started the injection and.......no pain after 40mls, 80mls, 120 mls, etc. until 250 mls. Go figure. So back to square one. Taking a day at a time. If tomorrow goes well we'll see what happens Friday and so on and so on. One thing I know for sure is each day is always something different.
Day 7 almost in the books...we'll see what tomorrow brings.
Love,
Tony
Tuesday, September 2, 2008
Little by little...
Day six in bed and you could say I'm getting a tad antsy. Crystal says that I can lay on the couch with the best of them but knows this is quite a challenge for me. Good news is that I can still report that I feel good. A few aches and pains from lying on my back, but nothing I can't handle. I have to put a brace on my right leg at night to make sure I don't bend it and that's getting annoying at night. Didn't sleep very good last night, but hard to feel sorry for a guy lying in bed all day that needs some sleep.
Yesterday I almost got 350 ml in my system. I'm having a harder time pushing the sodium bicarb right now. If I push to fast I get the chest pains I had in Italy. I got to about 325 ml last night and I had to stop. I said yesterday that I pride myself on getting through the tough times, but I also pride myself on listening to what my body is telling me. My high tolerance to pain and longing to get this treatment sometime make it difficult for me to listen to my body which is telling me to stop or fight through it. I am opting to listen these days and I know that whatever is supposed to happen will happen. I'm somewhat discouraged that I'm not getting the "full protocol" but at the same time I know any amount of sodium bicarb is better than none at all.
Today as soon as I started treatment "the pain" started. I'm getting pretty good at being my own doctor, so thought maybe my catheter has moved out of my liver cavity thus creating some pain. I called IU med to see if they had any suggestions and also asked about changing my dressing--which in my medical terms is getting a little ucky. Obviously not looking to contract an infection. I'm tentatively going back in tomorrow (my doctor was on vacation today)depending on what my doctor says---he doesn't really want me out of bed, but admits the difficulty of evaluating me from my hospital bed at home. If the catheter is dislodged then what I am doing is not going to be effective so will be hard to conclude if the sodium bicarb worked or not. We'll see what happens tomorrow.
Anyway...I stilled pushed 250 ml today. Pain is tolerable, but noticeable. The treatment just takes some time. As long as I go slow I can get through it. My aunt Betty came back today to help around the house and be with me during the day. As always it's good to have her here and of course we put her to work. I hope she doesn't decide to "unretire" after this stint with me.
We've gotten lots of encouraging e-mails over the past several days--we continue to thank all of you supporting us (not just those sending e-mails, etc.). All the support does make it easier to get through the days.
We continue to take a day at a time.
Until tomorrow...
Tony
Yesterday I almost got 350 ml in my system. I'm having a harder time pushing the sodium bicarb right now. If I push to fast I get the chest pains I had in Italy. I got to about 325 ml last night and I had to stop. I said yesterday that I pride myself on getting through the tough times, but I also pride myself on listening to what my body is telling me. My high tolerance to pain and longing to get this treatment sometime make it difficult for me to listen to my body which is telling me to stop or fight through it. I am opting to listen these days and I know that whatever is supposed to happen will happen. I'm somewhat discouraged that I'm not getting the "full protocol" but at the same time I know any amount of sodium bicarb is better than none at all.
Today as soon as I started treatment "the pain" started. I'm getting pretty good at being my own doctor, so thought maybe my catheter has moved out of my liver cavity thus creating some pain. I called IU med to see if they had any suggestions and also asked about changing my dressing--which in my medical terms is getting a little ucky. Obviously not looking to contract an infection. I'm tentatively going back in tomorrow (my doctor was on vacation today)depending on what my doctor says---he doesn't really want me out of bed, but admits the difficulty of evaluating me from my hospital bed at home. If the catheter is dislodged then what I am doing is not going to be effective so will be hard to conclude if the sodium bicarb worked or not. We'll see what happens tomorrow.
Anyway...I stilled pushed 250 ml today. Pain is tolerable, but noticeable. The treatment just takes some time. As long as I go slow I can get through it. My aunt Betty came back today to help around the house and be with me during the day. As always it's good to have her here and of course we put her to work. I hope she doesn't decide to "unretire" after this stint with me.
We've gotten lots of encouraging e-mails over the past several days--we continue to thank all of you supporting us (not just those sending e-mails, etc.). All the support does make it easier to get through the days.
We continue to take a day at a time.
Until tomorrow...
Tony
Monday, September 1, 2008
Bouncing back..
I pride myself on getting through the tough times. I know it's ok to break down every now and then, but at the same time often wonder if that gets me anywhere. The past two days have been brutal. Lots of pain, body aches, frustration, etc., and as Crystal said all while being bed ridden.
So far today, seems as if I'm bouncing back again. This is the best I have felt in a couple of days so hoping I can keep it going. We have not done a treatment yet today but plan to soon. Yesterday I was able to push 250ml (half of the 500ml protocol) through the catheter. My plan is to increase the amount each day and hope my body begins to tolerate it better. I keep telling Crystal let's take this a day at a time.
I want to thank Brenda Petruska, my aunt Betty Verkley, Donna Turner, Carol and Brad Haney, Duane and Joan Buell (and their kids), Jeff and Carletta Voegle (and their kids), and Laurie and Scott Dyer (and their kids) for helping out with the kids and making dinner the past two days. This is hard on Crystal so the help has been much appreciated. We've been back and forth the past two days on calling it quits, but I'm not willing to give up on this yet.
Obviously I want to thank Crystal too. This is hard on her too...and the kids. She continues to fight through the tough times too. You can read her frustration in the journal. She remains supportive, but hates to see me not feeling good. She made the comment yesterday that this is "just as bad as chemo." I'm not sure I'd qualify anything as being as bad as chemo, but at the time I had a hard time arguing my case.
We'll see what happens today...
Love,
Tony
So far today, seems as if I'm bouncing back again. This is the best I have felt in a couple of days so hoping I can keep it going. We have not done a treatment yet today but plan to soon. Yesterday I was able to push 250ml (half of the 500ml protocol) through the catheter. My plan is to increase the amount each day and hope my body begins to tolerate it better. I keep telling Crystal let's take this a day at a time.
I want to thank Brenda Petruska, my aunt Betty Verkley, Donna Turner, Carol and Brad Haney, Duane and Joan Buell (and their kids), Jeff and Carletta Voegle (and their kids), and Laurie and Scott Dyer (and their kids) for helping out with the kids and making dinner the past two days. This is hard on Crystal so the help has been much appreciated. We've been back and forth the past two days on calling it quits, but I'm not willing to give up on this yet.
Obviously I want to thank Crystal too. This is hard on her too...and the kids. She continues to fight through the tough times too. You can read her frustration in the journal. She remains supportive, but hates to see me not feeling good. She made the comment yesterday that this is "just as bad as chemo." I'm not sure I'd qualify anything as being as bad as chemo, but at the time I had a hard time arguing my case.
We'll see what happens today...
Love,
Tony
Sunday, August 31, 2008
What do we do next?
Hi all. Crystal again. Tony woke up feeling good. He did not have any chest pains this morning. He decided to do half of the treatment today and see if that helped with the chest pain issue. Before he decided to begin the treatment for today he said he felt like he had the flu--chilled--not much of an appetite. Our neighbor, Carol Haney, came over to check on him. She is a nurse. She said to watch for a fever as this is a sign of infection (could mean a problem with the catheter). As the day wore on he developed a fever of 100.2. The tough part is that a slight fever can also be a side effect from the sodium bicarbonate treatments. His urine is back to a normal color, and he says he feels that the cath. is fine (no bleeding). We have nobody to call and see how their body reacted, so we have no "norm" to compare how he is feeling.
It's just so hard to know what to do. Tony has a high tolerance for pain, but has been miserable since Friday night....imagine feeling like crap, wanting something SO BAD, and oh yeah.....not being able to bend your right leg or get out of bed. He has a whole new appreciation for all of those pregnant bedridden mothers out there!!
He has such a strong will and became very sad today and asked me "why does it always have to be so hard?" I have no response for that. It is hard to stay positive when you constantly feel like a big pile of crap is being dumped on you! Just once can something PLEASE go his way???????????? He wants this so bad for every cancer patient out there who has courage enough to step outside of the box when it comes to their treatment..to not just believe the statistics or do the protocol of what they tell you to do. He believes so much in this treatment, but we are questioning at what point is enough-enough???? Surgical removal of half of his left lobe of his liver is the only next step we have.
Please drop him an encouraging line if you can--it strengthens him when he hears from all of you.
That's it for now,
Time for sleep,
Crystal
It's just so hard to know what to do. Tony has a high tolerance for pain, but has been miserable since Friday night....imagine feeling like crap, wanting something SO BAD, and oh yeah.....not being able to bend your right leg or get out of bed. He has a whole new appreciation for all of those pregnant bedridden mothers out there!!
He has such a strong will and became very sad today and asked me "why does it always have to be so hard?" I have no response for that. It is hard to stay positive when you constantly feel like a big pile of crap is being dumped on you! Just once can something PLEASE go his way???????????? He wants this so bad for every cancer patient out there who has courage enough to step outside of the box when it comes to their treatment..to not just believe the statistics or do the protocol of what they tell you to do. He believes so much in this treatment, but we are questioning at what point is enough-enough???? Surgical removal of half of his left lobe of his liver is the only next step we have.
Please drop him an encouraging line if you can--it strengthens him when he hears from all of you.
That's it for now,
Time for sleep,
Crystal
Saturday, August 30, 2008
Good Day- Bad Day
Hello. This is Crystal today. Remember when Tony called this a roller coaster ride? Well, I hope your seat belts are securely fastened because we are going down the hill fast today!!! Yesterday we were beaming---- got him home, did the Sod. Bicarb. treatment in a one hour period and all was well.
Today, he says that the catheter feels fine-no pain. He is definitely going a little crazy being bedridden ---even watching sports!! Around mid-morning he started complaining of chest pains and some of the other little quirks he felt in Italy. As the day has gone on the pains are intensifying---just like Italy. He says it feels like an elephant is sitting on his chest.
I started researching on the computer about possible side effects of sodium bicarbonate (more than I already had) and am now wondering if he is having an allergic reaction to sodium bicarb??? He doesn't have any of the other symptoms though-just the chest tightness! So here we are at 7pm just looking at each other feeling once again so close to getting this treatment and not knowing if it is going to happen for us (him). Dr. Simoncini has told us that this has not happened to him before with any of his patients. He is perplexed as well.
Other than that we are okay. The kids have been playing at the neighbors house today and are fine. Please pray for direction and guidance on what we should do at this point. Hopefully tomorrow will be another "good day"...... we shall see!!!
We will blog tomorrow-stay tuned,
Crystal
Today, he says that the catheter feels fine-no pain. He is definitely going a little crazy being bedridden ---even watching sports!! Around mid-morning he started complaining of chest pains and some of the other little quirks he felt in Italy. As the day has gone on the pains are intensifying---just like Italy. He says it feels like an elephant is sitting on his chest.
I started researching on the computer about possible side effects of sodium bicarbonate (more than I already had) and am now wondering if he is having an allergic reaction to sodium bicarb??? He doesn't have any of the other symptoms though-just the chest tightness! So here we are at 7pm just looking at each other feeling once again so close to getting this treatment and not knowing if it is going to happen for us (him). Dr. Simoncini has told us that this has not happened to him before with any of his patients. He is perplexed as well.
Other than that we are okay. The kids have been playing at the neighbors house today and are fine. Please pray for direction and guidance on what we should do at this point. Hopefully tomorrow will be another "good day"...... we shall see!!!
We will blog tomorrow-stay tuned,
Crystal
Thursday, August 28, 2008
One step at a time...
We did what we said we were going to do today. Our very good friend, Brenda Petruska, took me to the hospital today to give Crystal a chance to get some work done this morning before she came. We didn't ask any questions about tomorrow or the next day, took a step at a time and we had SUCCESS!!
Right now I'm sitting in a hospital bed with no pain but can't say I'm "comfortable". The procedure went quickly and with no issues. I can only sit up to a 30 degree angle, can't move my right leg or my stomach muscles, but am probably as happy as I have been in a long time. I'm trying to stay guarded as there are definitely risks and possible obstacles, but for now things are good. We check the catheter tomorrow morning in IR to make sure it's still sitting in my liver. If everything remains the same after a night of sleep then we go home and begin the sodium bicarbonate treatment. Five to six weeks ago we were in Italy trying to get this done and I seem right now to have gone full circle and to the point I was in Italy---so close.
Looks like right now I'm not going to be very mobile. The doctor doesn't really want me to get out of bed. We're looking into renting a hospital bed so I can be downstairs in our house and not secluded all day up in our bedroom. I'm sure as the week goes on we'll see how mobile I can actually be, but right now don't want to screw this up---so not taking any chances. My aunt Betty (the retired nurse) came up today, which turned out to be a good thing since there was some explaining to do about care of this catheter and what problems to look for. She is staying with Crystal and the kids tonight so she can be with me tomorrow as well.
We got pictures from the fundraiser last night from the photographer, Angela, that was there that night. She also put together a DVD that was amazing. I'll have plenty of time to update the website and hopefully find a way to show the video. Seeing the pictures and the video was a good way to go into today. Seeing all of the pictures brought back feelings from that night and gave me strength today to tackle whatever came my way.
So in a nutshell today was an "up" on our roller coaster ride. I'm going to ride it out as long as I can.
More news tomorrow....
Love,
Tony
Right now I'm sitting in a hospital bed with no pain but can't say I'm "comfortable". The procedure went quickly and with no issues. I can only sit up to a 30 degree angle, can't move my right leg or my stomach muscles, but am probably as happy as I have been in a long time. I'm trying to stay guarded as there are definitely risks and possible obstacles, but for now things are good. We check the catheter tomorrow morning in IR to make sure it's still sitting in my liver. If everything remains the same after a night of sleep then we go home and begin the sodium bicarbonate treatment. Five to six weeks ago we were in Italy trying to get this done and I seem right now to have gone full circle and to the point I was in Italy---so close.
Looks like right now I'm not going to be very mobile. The doctor doesn't really want me to get out of bed. We're looking into renting a hospital bed so I can be downstairs in our house and not secluded all day up in our bedroom. I'm sure as the week goes on we'll see how mobile I can actually be, but right now don't want to screw this up---so not taking any chances. My aunt Betty (the retired nurse) came up today, which turned out to be a good thing since there was some explaining to do about care of this catheter and what problems to look for. She is staying with Crystal and the kids tonight so she can be with me tomorrow as well.
We got pictures from the fundraiser last night from the photographer, Angela, that was there that night. She also put together a DVD that was amazing. I'll have plenty of time to update the website and hopefully find a way to show the video. Seeing the pictures and the video was a good way to go into today. Seeing all of the pictures brought back feelings from that night and gave me strength today to tackle whatever came my way.
So in a nutshell today was an "up" on our roller coaster ride. I'm going to ride it out as long as I can.
More news tomorrow....
Love,
Tony
Wednesday, August 27, 2008
Here we go again...
A week ago I was sitting here writing the same story...so not sure if I should say see my blog from August 20th or whether I should tell you what's going on.
Made the necessary calls to go in tomorrow and try to get the procedure done...again. Same time (10:30), same place (IR), same doctor, etc. I'm really hoping to get my VIP pass to IR tomorrow, hoping it will get me in without having to register in the future (or at least move to the front of the line).
I'm going in with low expectations, but obviously hoping for success. They are going to go up through my groin (upper right leg) and hope they can plant the catheter into the same axillary artery that we tried last week. Crystal and I have had numerous calls from people asking what they can do, but at this point telling everyone we are going to take tomorrow minute by minute and see what happens. We aren't going to worry about how much I may be able to move or what we need to do Friday---our main goal is to get that catheter in and see what happens. If we succeed I'm sure we'll be asking for help here and there depending on how mobile I may be. Keep your fingers crossed.
I'll keep everyone posted...
Love,
Tony
Made the necessary calls to go in tomorrow and try to get the procedure done...again. Same time (10:30), same place (IR), same doctor, etc. I'm really hoping to get my VIP pass to IR tomorrow, hoping it will get me in without having to register in the future (or at least move to the front of the line).
I'm going in with low expectations, but obviously hoping for success. They are going to go up through my groin (upper right leg) and hope they can plant the catheter into the same axillary artery that we tried last week. Crystal and I have had numerous calls from people asking what they can do, but at this point telling everyone we are going to take tomorrow minute by minute and see what happens. We aren't going to worry about how much I may be able to move or what we need to do Friday---our main goal is to get that catheter in and see what happens. If we succeed I'm sure we'll be asking for help here and there depending on how mobile I may be. Keep your fingers crossed.
I'll keep everyone posted...
Love,
Tony
Monday, August 25, 2008
Plan B...
Ok...so maybe it's like Plan Z by now, but at least I have another plan. I took the weekend to try to get my thoughts in order and have some fun. I think I got both accomplished, but I must say it has been very difficult to keep focused over the past few days. I know the decisions I make are the right ones because that is how I'm being led, but at the same time some of these decisions seem pretty major right now. To avoid to much length in this post I better get to the point.
Several e-mails and conversations today with doctors. I was able to speak with Dr. Simoncini (from Italy) today. He always makes me smile and even though I know he doesn't always completely understand what my doctors are doing to me here, he remains supportive and hopeful in my journey. The main topic of conversation with him today was to discuss alternative protocols. I wanted to see if I could do sodium bicarbonate treatment for 10 to 14 consecutive days versus his protocol of 8 days on and 6 days off (4 cycles). My thought process is that I could survive being bed ridden for two weeks, do the sodium bicarbonate treatment, pull the catheter out and get a scan. If the results were positive I would talk the IU Med doctors to put a catheter back in, if they were not positive I would move on to another treatment. He said he would like for me to do 8 days on, 6 days off, 8 days on, but thinks that 10-14 days straight would give me a gauge on if the sodium bicarbonate was working. That was good news for me and what I wanted to hear. He spent some time answering some more detailed questions with me, told me he was coming to LA in two weeks and could come see him if I needed to talk.
I also spoke with my surgeon, Dr. Maluccio today. She too makes me smile and I appreciate her more and more in this journey. She has gotten to know my sense of humor, my persistence, and my passion to find alternative ways to beat cancer. Now when we talk it's like talking to a friend not your prototypical liver surgeon. When she heard about my new "protocol" she was on board. She was worried about 48 days of bed rest, but wasn't concerned with 10-14 days. She joked with me today that I have every doctor in the world doing what I tell them to do to treat a major disease. She didn't make the comment in a derogatory manner, she's wanting to help in any way she can and I'm so lucky to have her on my team.
So the long and short of the story is she is going to e-mail the radiologist and have him insert the catheter through my artery in my groin and plant it in the same auxiliary artery he couldn't plant it in before. Apparently going up through the upper leg is a more direct route and neither Dr. Maluccio nor Dr. Agerwal feel like we will have the same issues. We are going to try to get this done this week I just don't have a day yet. I'm still a little sore from last week, but will be ready whenever they want me back on that table.
As I mentioned before...I'm trying to stay focused and live in the moment. I'm not doing a great job, but I constantly tell myself I'm ok right now--I can't worry about tomorrow today. No matter what plan I am on, I want it to consist of treatment so getting something done soon is extremely important for me. I would like to say I'm looking forward to another adventurous week, but honestly hoping for a dull and boring week of a minor surgical procedure with some in home treatment. We'll see.
I continue to be amazed by the support we receive. I want to thank all of you...
Stay tuned...
Love,
Tony
Several e-mails and conversations today with doctors. I was able to speak with Dr. Simoncini (from Italy) today. He always makes me smile and even though I know he doesn't always completely understand what my doctors are doing to me here, he remains supportive and hopeful in my journey. The main topic of conversation with him today was to discuss alternative protocols. I wanted to see if I could do sodium bicarbonate treatment for 10 to 14 consecutive days versus his protocol of 8 days on and 6 days off (4 cycles). My thought process is that I could survive being bed ridden for two weeks, do the sodium bicarbonate treatment, pull the catheter out and get a scan. If the results were positive I would talk the IU Med doctors to put a catheter back in, if they were not positive I would move on to another treatment. He said he would like for me to do 8 days on, 6 days off, 8 days on, but thinks that 10-14 days straight would give me a gauge on if the sodium bicarbonate was working. That was good news for me and what I wanted to hear. He spent some time answering some more detailed questions with me, told me he was coming to LA in two weeks and could come see him if I needed to talk.
I also spoke with my surgeon, Dr. Maluccio today. She too makes me smile and I appreciate her more and more in this journey. She has gotten to know my sense of humor, my persistence, and my passion to find alternative ways to beat cancer. Now when we talk it's like talking to a friend not your prototypical liver surgeon. When she heard about my new "protocol" she was on board. She was worried about 48 days of bed rest, but wasn't concerned with 10-14 days. She joked with me today that I have every doctor in the world doing what I tell them to do to treat a major disease. She didn't make the comment in a derogatory manner, she's wanting to help in any way she can and I'm so lucky to have her on my team.
So the long and short of the story is she is going to e-mail the radiologist and have him insert the catheter through my artery in my groin and plant it in the same auxiliary artery he couldn't plant it in before. Apparently going up through the upper leg is a more direct route and neither Dr. Maluccio nor Dr. Agerwal feel like we will have the same issues. We are going to try to get this done this week I just don't have a day yet. I'm still a little sore from last week, but will be ready whenever they want me back on that table.
As I mentioned before...I'm trying to stay focused and live in the moment. I'm not doing a great job, but I constantly tell myself I'm ok right now--I can't worry about tomorrow today. No matter what plan I am on, I want it to consist of treatment so getting something done soon is extremely important for me. I would like to say I'm looking forward to another adventurous week, but honestly hoping for a dull and boring week of a minor surgical procedure with some in home treatment. We'll see.
I continue to be amazed by the support we receive. I want to thank all of you...
Stay tuned...
Love,
Tony
Friday, August 22, 2008
What can I say?
My "substitute author" did a fine job with the update last night, albeit she was fairly agitated. If you don't know Crystal she does not like it when things are not getting done or she is kept in the dark. I always know when I am in the hospital that I don't need to worry---she is my little bulldog. Last night she had doctors giving her their food card to pay for dinner and nurses scrambling for answers. She does this because she cares and in a very, very, very small way I feel some sympathy for those getting her heat. She won't take no for an answer or until the job is complete. Our care last night was less than acceptable, but at the same time I was fairly "out of it" so my experience was a little different than hers. I don't have to be a part of the waiting and not getting the answers which is the hardest part for her to accept.
There are disappointing times in your life and then there are DISAPPOINTING times in your life. Today has been a little surreal...I don't think it has hit me yet what happened yesterday. I feel like I should be in tears, but they won't come--it's almost like I'm in some sort of shock. I spent a little time with Will this morning and he helped provide me with a few tears. I'm wearing a sling that he doesn't even ask about--he has no idea what is going on with me or what's going through my head. All he wants is to be by my side and to tell his daddy what he did with mamaw and nana yesterday. He makes me smile and helps me take my mind of what is going on, but at the same time he's one of the reasons I fight so hard to beat this.
My plan is to gather my "advisers" this weekend and talk about what is next. I absolutely don't want to give up on the sodium bicarbonate, but I feel like the IU doctors are starting to become impatient with "my plan." Locally my options are radiation beads (which is what the IU Med Center wants to do), surgery, or put a port in through my groin to do sodium bicarbonate but would leave me bed ridden while doing treatment. None of the options sound to intriguing to me, but I need to do something. Not doing anything is beginning to work on my psyche as well. I can't keep going weeks without getting something done.
To say the least I'm a little overwhelmed and overstressed right now. I'll take the weekend to absorb this news and get back into fighter mode. I have my fantasy football draft this weekend which may help take my mind off of all of it for at least a day tomorrow.
Thanks as always for all of your support. I'm still a believer in things happening for a reason---I'm perplexed on this one, but I know I'm not always supposed to know.
Love,
Tony
There are disappointing times in your life and then there are DISAPPOINTING times in your life. Today has been a little surreal...I don't think it has hit me yet what happened yesterday. I feel like I should be in tears, but they won't come--it's almost like I'm in some sort of shock. I spent a little time with Will this morning and he helped provide me with a few tears. I'm wearing a sling that he doesn't even ask about--he has no idea what is going on with me or what's going through my head. All he wants is to be by my side and to tell his daddy what he did with mamaw and nana yesterday. He makes me smile and helps me take my mind of what is going on, but at the same time he's one of the reasons I fight so hard to beat this.
My plan is to gather my "advisers" this weekend and talk about what is next. I absolutely don't want to give up on the sodium bicarbonate, but I feel like the IU doctors are starting to become impatient with "my plan." Locally my options are radiation beads (which is what the IU Med Center wants to do), surgery, or put a port in through my groin to do sodium bicarbonate but would leave me bed ridden while doing treatment. None of the options sound to intriguing to me, but I need to do something. Not doing anything is beginning to work on my psyche as well. I can't keep going weeks without getting something done.
To say the least I'm a little overwhelmed and overstressed right now. I'll take the weekend to absorb this news and get back into fighter mode. I have my fantasy football draft this weekend which may help take my mind off of all of it for at least a day tomorrow.
Thanks as always for all of your support. I'm still a believer in things happening for a reason---I'm perplexed on this one, but I know I'm not always supposed to know.
Love,
Tony
Thursday, August 21, 2008
Wish we had better news!
Hello everyone! This is Crystal today...so my entry will not be as well written as Tony's! He is much better with words then myself! In summary, things did not work out today. We are really starting to not like coming to the IU Med Center. The procedure got started 4 hours late....it was only suppose to take an hour. Three hours later I demanded to have someone tell me what was happening. Nobody seemed to be able to locate him. They finally send me to the room he was assigned to b/c he was suppose to be there----guess what -----he wasn't there. It was if I was trying to find Bin Laden or something!
If you can't tell right now, I am pretty agitated. The nurse comes in his empty room and says "oh he is doing fine, but he may not have to stay the night". I said "of course he did" knowing that tomorrow they needed to check the port again. "Oh, she said, the procedure didn't work!" To say I was shocked and disappointed is an understatement.....we both are. They finally get me to him and the radiologist shows me on the screen what he had tried to do. He explained that he had awkward angles and curves to move around and that he could not get the catheter to ever stay in place. Every time he put it in, it would resist and come out.....remember, they don't won't to stitch it in b/c they are afraid of clotting,etc.
Now it is 7:30, and he has been in the room for almost 2 hours....guess what....the doctor still has not given the order for him to be able to eat and the kitchen does not accept patient orders after .......you guessed it...7:30!!!
The surgeon who we love is suppose to talk to us tomorrow, but basically she told us our options.
1. Go in through the groin to put the catheter in place (which is a more direct/easy way to go), but he would have to be completely bed ridden or 6 weeks (if he does the sodium bicarbonate) . His risk of infection goes way up with this, and they do not think it is a good option for his lungs.
2. Go in through the groin and inject the radiation beads---in and out procedure.
3. Surgically remove the left lobe of his liver (which is where the largest tumor is) and this also means she would have to remove his last "artery going to his left side of the liver".
I will be emailing Dr. Simoncini tonight to explain to him what happened. I am not sure if it can be done a different way in Italy, or if this radiologist just didn't get lucky with the procedure....bottom line is there is only one way into his left lobe, so I'm not convinced that going to Italy will get us the outcome we want either.
I need to go for now and get him some food somehow....stat tuned and the "original author" will be back tomorrow I'm sure once he has some more time to absorb today's events!!!
Keep praying for the answers!
Crystal
If you can't tell right now, I am pretty agitated. The nurse comes in his empty room and says "oh he is doing fine, but he may not have to stay the night". I said "of course he did" knowing that tomorrow they needed to check the port again. "Oh, she said, the procedure didn't work!" To say I was shocked and disappointed is an understatement.....we both are. They finally get me to him and the radiologist shows me on the screen what he had tried to do. He explained that he had awkward angles and curves to move around and that he could not get the catheter to ever stay in place. Every time he put it in, it would resist and come out.....remember, they don't won't to stitch it in b/c they are afraid of clotting,etc.
Now it is 7:30, and he has been in the room for almost 2 hours....guess what....the doctor still has not given the order for him to be able to eat and the kitchen does not accept patient orders after .......you guessed it...7:30!!!
The surgeon who we love is suppose to talk to us tomorrow, but basically she told us our options.
1. Go in through the groin to put the catheter in place (which is a more direct/easy way to go), but he would have to be completely bed ridden or 6 weeks (if he does the sodium bicarbonate) . His risk of infection goes way up with this, and they do not think it is a good option for his lungs.
2. Go in through the groin and inject the radiation beads---in and out procedure.
3. Surgically remove the left lobe of his liver (which is where the largest tumor is) and this also means she would have to remove his last "artery going to his left side of the liver".
I will be emailing Dr. Simoncini tonight to explain to him what happened. I am not sure if it can be done a different way in Italy, or if this radiologist just didn't get lucky with the procedure....bottom line is there is only one way into his left lobe, so I'm not convinced that going to Italy will get us the outcome we want either.
I need to go for now and get him some food somehow....stat tuned and the "original author" will be back tomorrow I'm sure once he has some more time to absorb today's events!!!
Keep praying for the answers!
Crystal
Sunday, August 17, 2008
Waiting...waiting...waiting...
Decided that if I'm going to wait another week for a port than I might as well make use of having full use of both of my limbs. Saturday I worked out in the yard and started preparing for the fantasy football draft I host every year. I needed to get some of the "labor" done as I sense I'm going to have limited mobility after Thursday. Sunday we visited with Crystal's family so I was able to rest from my big day Saturday.
I got an interesting e-mail on Friday from a lady from the Netherlands. She has a brother-in -law that found my blog in the Netherlands and asked her to help translate my journal. He has lost many family members to cancer and has started a group to help get alternative treatments (like sodium bicarbonate) available to everyone and covered by health insurance companies. She has also sent me valuable information on not only sodium bicarbonate but other alternative treatments. Below is an excerpt from her e-mail to me...I hope she doesn't mind I use it.
"I write you to let you know that I think of you and your fight against this terrible illness. What I read about you in your weblog is that you are a fighter and I hope you keep up this fight against this disease!!!! I hope you can stay positive and keep up the good spirit because that is so important. I also think of your family, your wife and children they also need a lot of support too. I wish them all the best as well."
E-mails like this are amazing to me--there is so much good in this world that we don't see everyday. What she may not know is that e-mails like this help charge me. As long as there are groups out there fighting for alternative cancer treatments, cancer patients continue to have hope. I want so badly to be part of this hope for other patients. I know I can do that cured or not, but obviously would rather be on the cured side if I had my choice. God willing I continue that journey Thursday. As I tell everyone, I'm cautiously excited and we will see what happens.
Thanks as always for your support. Stay tuned...
Love,
Tony
I got an interesting e-mail on Friday from a lady from the Netherlands. She has a brother-in -law that found my blog in the Netherlands and asked her to help translate my journal. He has lost many family members to cancer and has started a group to help get alternative treatments (like sodium bicarbonate) available to everyone and covered by health insurance companies. She has also sent me valuable information on not only sodium bicarbonate but other alternative treatments. Below is an excerpt from her e-mail to me...I hope she doesn't mind I use it.
"I write you to let you know that I think of you and your fight against this terrible illness. What I read about you in your weblog is that you are a fighter and I hope you keep up this fight against this disease!!!! I hope you can stay positive and keep up the good spirit because that is so important. I also think of your family, your wife and children they also need a lot of support too. I wish them all the best as well."
E-mails like this are amazing to me--there is so much good in this world that we don't see everyday. What she may not know is that e-mails like this help charge me. As long as there are groups out there fighting for alternative cancer treatments, cancer patients continue to have hope. I want so badly to be part of this hope for other patients. I know I can do that cured or not, but obviously would rather be on the cured side if I had my choice. God willing I continue that journey Thursday. As I tell everyone, I'm cautiously excited and we will see what happens.
Thanks as always for your support. Stay tuned...
Love,
Tony
Wednesday, August 13, 2008
Change of plans...
Just when you think it's time to move forward, I get thrown another curveball. For some odd reason I'm not supposed to have my procedure completed this week. Long story short the radiologist performing my procedure is on vacation Friday and he needs to be there for me on Friday. We moved the procedure back one week. Not ideal, but really nothing I can do. One thing I have learned over the past four years is everything happens for a reason. You don't always have to like it, but there is no reason to dwell on the things you can not control.
So we'll wait another week and see what happens...
I'm still amazed by the support I have received and continue to receive. I want to thank all of those again that attended the fundraiser last Saturday and I want to thank all of those that have supported me that couldn't be at the fundraiser.
More updates as I get them....
Love,
Tony
So we'll wait another week and see what happens...
I'm still amazed by the support I have received and continue to receive. I want to thank all of those again that attended the fundraiser last Saturday and I want to thank all of those that have supported me that couldn't be at the fundraiser.
More updates as I get them....
Love,
Tony
Tuesday, August 12, 2008
A few stats and the next steps...
Finally getting back into the swing of things after the weekend. Saturday night's "high" created a beginning of the week "let down" trying to get back into a routine. Thanks again to everyone that shared the evening with us.
We had 425 people walk through the door and we raised almost $30,000 that evening . Quite an accomplishment...I'm very humbled by the support and want to promise everyone that the money will go to good use. Every person that has donated, whether it was at the auction or outside the auction, has empowered me to do whatever I need to do to beat this disease. I said Saturday night that I can now leave no stone unturned in my quest to find the cure and that is what I plan to do. Each one of you are now part of this journey, you've made me stronger and more determined than ever, and I thank you for being a part of it.
As a quick side note...I will be updating the website in the next week now that the fundraiser is over. I want to have a page or two designated to the fundraiser night. If you have a story or pictures from the evening that you want to share I'll include them on the website. My e-mail is tony.feller@reebok.com. I'll only publish what you ask me to.
The next chapter begins Thursday. The hospital called today and we scheduled my procedure to put in a port on Thursday. I'll get the buy one surgery get a free night in the hospital treatment, so looking forward to not getting any sleep Thursday night. On Friday they want to test the port to make sure everything is functioning as planned and then I will start the treatments. I don't know if we will test the port with sodium bicarbonate or not, but I'm BYOM (bring your own medicine) to the hospital and I will see if we can get the doctors to administer the first batch. I know I'm asking for a small miracle, but it can't hurt to ask right?? We'll see what happens.
I spoke with Dr. Simoncini from Italy today and he is excited that I am moving forward again. He is ok with using the 8.4% sodium bicarbonate and from his perspective didn't feel like I should have any problems. I was happy to hear from him, he has a way of instilling confidence and hope into his treatments which in turn makes me more anxious to get started.
My naturopath has the sodium bicarbonate and will be handing that off to me tomorrow. My aunt Betty, who is a retired nurse, will be coming up this weekend to help in case I run into any issues. Having her around gives me a comfort level knowing I have someone around that knows what to do if I run into any issues. I don't know exactly what to expect, so it helps to have someone around who you can trust to ask the right questions or be there if the "unexpected" occurs.
Stay tuned...
Love,
Tony
We had 425 people walk through the door and we raised almost $30,000 that evening . Quite an accomplishment...I'm very humbled by the support and want to promise everyone that the money will go to good use. Every person that has donated, whether it was at the auction or outside the auction, has empowered me to do whatever I need to do to beat this disease. I said Saturday night that I can now leave no stone unturned in my quest to find the cure and that is what I plan to do. Each one of you are now part of this journey, you've made me stronger and more determined than ever, and I thank you for being a part of it.
As a quick side note...I will be updating the website in the next week now that the fundraiser is over. I want to have a page or two designated to the fundraiser night. If you have a story or pictures from the evening that you want to share I'll include them on the website. My e-mail is tony.feller@reebok.com. I'll only publish what you ask me to.
The next chapter begins Thursday. The hospital called today and we scheduled my procedure to put in a port on Thursday. I'll get the buy one surgery get a free night in the hospital treatment, so looking forward to not getting any sleep Thursday night. On Friday they want to test the port to make sure everything is functioning as planned and then I will start the treatments. I don't know if we will test the port with sodium bicarbonate or not, but I'm BYOM (bring your own medicine) to the hospital and I will see if we can get the doctors to administer the first batch. I know I'm asking for a small miracle, but it can't hurt to ask right?? We'll see what happens.
I spoke with Dr. Simoncini from Italy today and he is excited that I am moving forward again. He is ok with using the 8.4% sodium bicarbonate and from his perspective didn't feel like I should have any problems. I was happy to hear from him, he has a way of instilling confidence and hope into his treatments which in turn makes me more anxious to get started.
My naturopath has the sodium bicarbonate and will be handing that off to me tomorrow. My aunt Betty, who is a retired nurse, will be coming up this weekend to help in case I run into any issues. Having her around gives me a comfort level knowing I have someone around that knows what to do if I run into any issues. I don't know exactly what to expect, so it helps to have someone around who you can trust to ask the right questions or be there if the "unexpected" occurs.
Stay tuned...
Love,
Tony
Sunday, August 10, 2008
What a night...
Honestly I'm still in awe from the night last night. I knew the committee had worked hard to put together a great event, but I think the night went above everyone's expectations. I want to thank the committee for all of their efforts and of course thank all of you that attended...it was a night I will never forget and one of the best nights of my life.
I am going to share the final numbers with everyone in the next day or two--we're still tallying and I want the numbers to be official. Crystal and I did go through the guest book today and couldn't believe the number of people we did not have a chance to chat with last night. We sincerely apologize to those we did not get to. Our goal was to "visit" with every person who came last night and we actually thought we did a good job until we went through the guest book. Our unofficial count was 415 guests and between the two of us we thought we got to almost everyone. We appreciate each and every one of you that came and thank you for supporting us through this journey.
Today was one of those days where you actually have a little depression from being on such a high the day before. Crystal and I got some rest and are preparing ourselves for the week ahead---hopefully starting treatment and a new chapter. I'll update everyone as soon as I know the plan.
Thanks again to all of you that attended last night.
With love,
Tony
I am going to share the final numbers with everyone in the next day or two--we're still tallying and I want the numbers to be official. Crystal and I did go through the guest book today and couldn't believe the number of people we did not have a chance to chat with last night. We sincerely apologize to those we did not get to. Our goal was to "visit" with every person who came last night and we actually thought we did a good job until we went through the guest book. Our unofficial count was 415 guests and between the two of us we thought we got to almost everyone. We appreciate each and every one of you that came and thank you for supporting us through this journey.
Today was one of those days where you actually have a little depression from being on such a high the day before. Crystal and I got some rest and are preparing ourselves for the week ahead---hopefully starting treatment and a new chapter. I'll update everyone as soon as I know the plan.
Thanks again to all of you that attended last night.
With love,
Tony
Wednesday, August 6, 2008
Feeling a little more like myself...
Finally starting to get into what I call "pre-Italy" condition again. Had some issues this week where I found myself spending most of my evenings getting more acquainted to our toilets. I finally went back to the IU Med Center on Tuesday because I knew something wasn't right. Basically they explained that the arterialgram I had a week and a half ago was causing me to be very tired and causing my nausea. Without getting into the details, when they embolised (blocked) my stomach arteries during the procedure my stomachs ability to process food was slowed. When I ate I felt like my food never moved...not what your looking for in the digestive process. Even though I wasn't thrilled with the diagnoses, I was comforted knowing that this was normal and I will be getting better soon. They put me on some medication to wake up my system (which I am reluctantly taking) and I am feeling better already. Hoping the trend will continue.
Because I haven't felt great I continue to hold off getting my port. I plan to call tomorrow and have it scheduled next week. My doctor from Italy has confirmed that I can dilute 8.4% sodium bicarbonate solution so I do have an alternate plan if I can not get the 5% solution in the next few days (still keeping my fingers crossed though). The big fundraiser is this weekend, so it's probably better to have the procedure done next week to ensure I'm in decent condition this weekend...I would hate to miss my own event.
Hoping everyone can make it Saturday. The committee has worked very hard and I am certain everyone will have a good time (am I allowed to plug my own event??). The main thing for me is that people come and have a good time...if you know me you would know that one of my favorite things is being in the company of my family and friends. I'm sure the night will not be one I ever forget and I want to share it with as many people as I can.
Love,
Tony
Because I haven't felt great I continue to hold off getting my port. I plan to call tomorrow and have it scheduled next week. My doctor from Italy has confirmed that I can dilute 8.4% sodium bicarbonate solution so I do have an alternate plan if I can not get the 5% solution in the next few days (still keeping my fingers crossed though). The big fundraiser is this weekend, so it's probably better to have the procedure done next week to ensure I'm in decent condition this weekend...I would hate to miss my own event.
Hoping everyone can make it Saturday. The committee has worked very hard and I am certain everyone will have a good time (am I allowed to plug my own event??). The main thing for me is that people come and have a good time...if you know me you would know that one of my favorite things is being in the company of my family and friends. I'm sure the night will not be one I ever forget and I want to share it with as many people as I can.
Love,
Tony
Sunday, August 3, 2008
Not sure if no news is good news!?!?
I've been a little quiet over the past few days. A couple reasons for that...1) there hasn't been much movement from doctors at IU Med nor am I making much progress on sodium bicarbonate and 2) I honestly haven't been feeling that great over the past few days.
The news on the sodium bicarbonate is a tad frustrating. Apparently all the sodium bicarbonate in the US has been recalled due to a bacteria they found in the most recent lot. Good news is I didn't get a taste of the sodium bicarb with bacteria, bad news is we're out of luck with getting new lots released in the next day or two. All I know right now is there is supposed to be a new lot delivered this Friday and hopefully I will get a portion of the shipment. In the meantime I am calling Dr. Simoncini in Italy tomorrow to see if he can send me some from Italy. Not exactly the plan I had in mind, but I have learned to be patient and things seem to happen for a reason.
The other part of my plan was to call IU Med tomorrow since I hadn't heard from them on scheduling my port placement. Problem is I don't want the port installed until I know I have the sodium bicarb. The port is going to be external and I'm guessing not very comfortable so when I get it I want to use it immediately. I'll probably wait a day or two and see what shakes out and go from there.
I was pretty sick this weekend, so not sure if my body is telling me something or not. I'm listening, but can't seem to figure out if I had food poisoning or the flu or healing from the past couple of weeks, etc. I think I'll take a day or two and see how I'm feeling before taking any more "big" steps. I really want to get started on my treatment as soon as possible, but also need to be strong for the next step.
We've got a big week ahead so trying to get as much rest as possible. I want to continue to thank all of you for your support. It has been an emotional roller coaster for a few weeks now for both Crystal and I. The letters, calls, visits, e-mails, guestbook entries, etc. are everyday miracles to me and I can't thank all of enough.
I'll continue to update this week as I get more information.
Love,
Tony
The news on the sodium bicarbonate is a tad frustrating. Apparently all the sodium bicarbonate in the US has been recalled due to a bacteria they found in the most recent lot. Good news is I didn't get a taste of the sodium bicarb with bacteria, bad news is we're out of luck with getting new lots released in the next day or two. All I know right now is there is supposed to be a new lot delivered this Friday and hopefully I will get a portion of the shipment. In the meantime I am calling Dr. Simoncini in Italy tomorrow to see if he can send me some from Italy. Not exactly the plan I had in mind, but I have learned to be patient and things seem to happen for a reason.
The other part of my plan was to call IU Med tomorrow since I hadn't heard from them on scheduling my port placement. Problem is I don't want the port installed until I know I have the sodium bicarb. The port is going to be external and I'm guessing not very comfortable so when I get it I want to use it immediately. I'll probably wait a day or two and see what shakes out and go from there.
I was pretty sick this weekend, so not sure if my body is telling me something or not. I'm listening, but can't seem to figure out if I had food poisoning or the flu or healing from the past couple of weeks, etc. I think I'll take a day or two and see how I'm feeling before taking any more "big" steps. I really want to get started on my treatment as soon as possible, but also need to be strong for the next step.
We've got a big week ahead so trying to get as much rest as possible. I want to continue to thank all of you for your support. It has been an emotional roller coaster for a few weeks now for both Crystal and I. The letters, calls, visits, e-mails, guestbook entries, etc. are everyday miracles to me and I can't thank all of enough.
I'll continue to update this week as I get more information.
Love,
Tony
Wednesday, July 30, 2008
A new chapter begins...
Going to go with a quick hitter today, but there are updates that need to be written today. Had the appointment with the Radiologist at IU Med today. Bottom line is that he is willing to put in a port to allow me to get the sodium bicarbonate treatment.
Honestly I never really considered them saying "no", but at the same time I can not believe they are willing to do this. I can not say enough about the team of doctors I am surrounded by. I have heard so many cancer patient's stories where their "conventional" doctors would threaten them or quit seeing them, etc. if they opted not to go along with their "protocols." I have been blessed with a team that is willing to take some chances, do some things outside the box, and ultimately believe in me and listen to what I have to say about my health. They certainly do not always believe or understand some of the things that I want to do, but they are always willing to listen and help where they can. Over four years, I think they have gotten to know me...and realize when I set my mind to something, it will get done.
I'm excited to get started again. The procedure is not set, but I assume it will be next week. I'm having some issues getting my hands on the sodium bicarbonate here in the States, but this wouldn't be fun if I didn't have something to deal with. I'm confident that I'll wear someone down enough to get me what I need so I'll be ready next week.
Feeling better each day. I think Crystal and I are a little tired overall, but other than that are doing well. The kids continue to run circles around us, which is perfectly fine.
I'll keep everyone updated in the next few days.
Thanks, as always, for all of your support....
Tony
Honestly I never really considered them saying "no", but at the same time I can not believe they are willing to do this. I can not say enough about the team of doctors I am surrounded by. I have heard so many cancer patient's stories where their "conventional" doctors would threaten them or quit seeing them, etc. if they opted not to go along with their "protocols." I have been blessed with a team that is willing to take some chances, do some things outside the box, and ultimately believe in me and listen to what I have to say about my health. They certainly do not always believe or understand some of the things that I want to do, but they are always willing to listen and help where they can. Over four years, I think they have gotten to know me...and realize when I set my mind to something, it will get done.
I'm excited to get started again. The procedure is not set, but I assume it will be next week. I'm having some issues getting my hands on the sodium bicarbonate here in the States, but this wouldn't be fun if I didn't have something to deal with. I'm confident that I'll wear someone down enough to get me what I need so I'll be ready next week.
Feeling better each day. I think Crystal and I are a little tired overall, but other than that are doing well. The kids continue to run circles around us, which is perfectly fine.
I'll keep everyone updated in the next few days.
Thanks, as always, for all of your support....
Tony
Sunday, July 27, 2008
Decision time
Starting to feel like myself again today. The pain in my chest is nearly gone (haven't had medication since Thursday night) and although I'm a little sore and emotionally drained from the past week and a half, I believe it's time to move on. I'm a bit more well rested too as you will probably see from the length of this post.
Arterial gram was relatively harmless. Worst part was laying flat on my back for 6 hours. You don't think that is very hard until you have to do it. If you're bored some day, give it a try... We did have some discoveries during the procedure though, as always, some positive and others a little disappointing.
Bad part is my hepatic artery pump has clearly been ruled out in giving me liver directed therapy. Basically, from the past surgeries and chemo intake I don't have clear flow to my liver. We now are pretty certain that the chest pains were from me forcing sodium bicarbonate into an area where it didn't have any place to go. This probably caused not only a reflux situation, but really irritated the arteries, which probably became inflamed which in turn caused my pain.
Good part is some people are born with one auxiliary hepatic artery that is connected to the liver from a different direction. Thankfully I am one of those people, so I do have another access point to get what I need into my liver. They can access that artery through my groin or under my arm and we can deliver what we need to the liver. That was good news, so my thought process immediately was that I can have someone put another port in and I can do the sodium bicarbonate treatment here in the states for the next 2 months.
Of course it's not that easy--this wouldn't be fun if we didn't have some sort of roadblock to deal with. IU Med Center is currently performing radiation treatment with these little "beads." They inject them through the groin so they get to your liver, lodge themselves in the tumors, and do their thing. Supposedly they have had good success, it's not very invasive, and apparently doesn't cause much pain or damage in or around the liver. Why am I telling you this? Because this is what the cancer center does and wants to do with me. Not that I would never consider this as an option, but right now I am to far involved with the sodium bicarbonate which is a natural substance that I am certain will not cause me any harm and at the same time not sure I'm buying everything they are selling to me. There was a young lady (younger than me) that I met a couple years ago that past away recently of colon cancer and I believe she had this treatment. I could be wrong, but I don't think it was as easy for her as told by the doctors.
So the dilemma becomes how do I get a port? My surgeon has said it will be a difficult "sell" to get a radiologist to give me a arterial port when in their mind there is no reason for it. They don't have anything against the sodium bicarbonate treatment, but don't have the all important studies to prove that it is effective ( I told them I would be a good start...). She sent me home Saturday charged with making a decision on what I want to do. Obviously everyone at IU Med is wanting me to do the "beads", but I see this as one more example of following my heart and fighting for what I believe. My decision that I will be sending my surgeon is that...I want a port. If they don't give me one, I will find someone that will---either locally (which is ideal) or back in Italy (maybe I'll get to see the Vatican after all). I don't have time to waste though, so my main goal this week will be getting this done somewhere.
Two caveats to the story. One is that this auxiliary artery is my last chance for liver directed therapy. Although Dr. Simoncini has already confirmed it does no harm to my arteries (I wrote him an e-mail two days ago) nor does my surgeon believe it would do any harm, they are using the old scare tactic of---if you blow this artery with sodium bicarb, you blow your opportunity for future liver directed therapy. I appreciate their medical advice, and realize anything can happen, but still feel very confident that I wouldn't have any problems.
Secondly, I spoke in my previous post that surgery may be an option to get rid of the biggest tumor in my liver. Problem is if we do surgery, I lose my auxiliary artery, thus losing the ability to perform any liver directed treatment. So time is of the essence in making a move as quickly as possible.
So now you're caught up again...looking forward to another adventurous week. As always, I appreciate all of your prayers and support.
Love,
Tony
Arterial gram was relatively harmless. Worst part was laying flat on my back for 6 hours. You don't think that is very hard until you have to do it. If you're bored some day, give it a try... We did have some discoveries during the procedure though, as always, some positive and others a little disappointing.
Bad part is my hepatic artery pump has clearly been ruled out in giving me liver directed therapy. Basically, from the past surgeries and chemo intake I don't have clear flow to my liver. We now are pretty certain that the chest pains were from me forcing sodium bicarbonate into an area where it didn't have any place to go. This probably caused not only a reflux situation, but really irritated the arteries, which probably became inflamed which in turn caused my pain.
Good part is some people are born with one auxiliary hepatic artery that is connected to the liver from a different direction. Thankfully I am one of those people, so I do have another access point to get what I need into my liver. They can access that artery through my groin or under my arm and we can deliver what we need to the liver. That was good news, so my thought process immediately was that I can have someone put another port in and I can do the sodium bicarbonate treatment here in the states for the next 2 months.
Of course it's not that easy--this wouldn't be fun if we didn't have some sort of roadblock to deal with. IU Med Center is currently performing radiation treatment with these little "beads." They inject them through the groin so they get to your liver, lodge themselves in the tumors, and do their thing. Supposedly they have had good success, it's not very invasive, and apparently doesn't cause much pain or damage in or around the liver. Why am I telling you this? Because this is what the cancer center does and wants to do with me. Not that I would never consider this as an option, but right now I am to far involved with the sodium bicarbonate which is a natural substance that I am certain will not cause me any harm and at the same time not sure I'm buying everything they are selling to me. There was a young lady (younger than me) that I met a couple years ago that past away recently of colon cancer and I believe she had this treatment. I could be wrong, but I don't think it was as easy for her as told by the doctors.
So the dilemma becomes how do I get a port? My surgeon has said it will be a difficult "sell" to get a radiologist to give me a arterial port when in their mind there is no reason for it. They don't have anything against the sodium bicarbonate treatment, but don't have the all important studies to prove that it is effective ( I told them I would be a good start...). She sent me home Saturday charged with making a decision on what I want to do. Obviously everyone at IU Med is wanting me to do the "beads", but I see this as one more example of following my heart and fighting for what I believe. My decision that I will be sending my surgeon is that...I want a port. If they don't give me one, I will find someone that will---either locally (which is ideal) or back in Italy (maybe I'll get to see the Vatican after all). I don't have time to waste though, so my main goal this week will be getting this done somewhere.
Two caveats to the story. One is that this auxiliary artery is my last chance for liver directed therapy. Although Dr. Simoncini has already confirmed it does no harm to my arteries (I wrote him an e-mail two days ago) nor does my surgeon believe it would do any harm, they are using the old scare tactic of---if you blow this artery with sodium bicarb, you blow your opportunity for future liver directed therapy. I appreciate their medical advice, and realize anything can happen, but still feel very confident that I wouldn't have any problems.
Secondly, I spoke in my previous post that surgery may be an option to get rid of the biggest tumor in my liver. Problem is if we do surgery, I lose my auxiliary artery, thus losing the ability to perform any liver directed treatment. So time is of the essence in making a move as quickly as possible.
So now you're caught up again...looking forward to another adventurous week. As always, I appreciate all of your prayers and support.
Love,
Tony
Thursday, July 24, 2008
Updated schedule and the kids
Wanted to write a note to keep everyone up to date on the schedule. Tomorrow I will have the arterialgram performed. The test is at 10:30 and we found out today that with the procedure comes a "free" overnight stay in the hospital. I can't say I'm exactly looking forward to it, but at the same time I'm hoping we will get some valuable answers that will allow us to make some important decisions.
My chest pain has subsided a little today. I'm still taking medication to help control the pain, but I'm spreading out the dosages in hopes to slowly get off the medication completely. For those of you that don't know me, I'm not a big fan of taking medication. Based on some of the things I've been through it puts me in a predicament. My naturopath has convinced me that not having pain is more important than taking medicine based on what your body produces when you are in pain. So I've been a compliant patient and will continue to swallow the pills if it means giving me relief.
We'll keep everyone updated on test results and possible next steps in the next few days.
Many of you have asked about our kids. William (3) is doing fine and pretty much goes with the flow. He's a happy and independent kid that I'm sure isn't aware of much that is going on right now. You give him some snacks, toys, maybe a computer game or good movie surrounded by people who love him and he's as content as can be.
Ashley (6) was having a really difficult time with my situation before Crystal and I left for Rome. We have told her what is going on with me and why we are doing the things we are doing. She did great while we were in Rome and since we have been home has really turned a corner. She is a sensitive child, with a deep rooted connection to her father. I know no matter what we tell her she can still feel some of the emotions I do. I wish she didn't have these "burdens" at age 6, but at the same time I know she is ok and she, like William, is surrounded by people that love her.
Special thanks to those who took care of her while we were in Rome, especially one Mrs. Terri Park. Terri is Ashley's school counselor and has become a big part of her life. She was with Ashley almost every day while we were gone. Ashley trusts her, believes in her and loves being around her. I know Terri has made a big difference in Ashley's life and has played a big part in helping her get through her anxiety. She has done this out of the kindness of her heart and we are forever grateful for her. She's one more example of the good in this world and the wonderful support system we have through this journey.
More updates to come...
Love,
Tony
My chest pain has subsided a little today. I'm still taking medication to help control the pain, but I'm spreading out the dosages in hopes to slowly get off the medication completely. For those of you that don't know me, I'm not a big fan of taking medication. Based on some of the things I've been through it puts me in a predicament. My naturopath has convinced me that not having pain is more important than taking medicine based on what your body produces when you are in pain. So I've been a compliant patient and will continue to swallow the pills if it means giving me relief.
We'll keep everyone updated on test results and possible next steps in the next few days.
Many of you have asked about our kids. William (3) is doing fine and pretty much goes with the flow. He's a happy and independent kid that I'm sure isn't aware of much that is going on right now. You give him some snacks, toys, maybe a computer game or good movie surrounded by people who love him and he's as content as can be.
Ashley (6) was having a really difficult time with my situation before Crystal and I left for Rome. We have told her what is going on with me and why we are doing the things we are doing. She did great while we were in Rome and since we have been home has really turned a corner. She is a sensitive child, with a deep rooted connection to her father. I know no matter what we tell her she can still feel some of the emotions I do. I wish she didn't have these "burdens" at age 6, but at the same time I know she is ok and she, like William, is surrounded by people that love her.
Special thanks to those who took care of her while we were in Rome, especially one Mrs. Terri Park. Terri is Ashley's school counselor and has become a big part of her life. She was with Ashley almost every day while we were gone. Ashley trusts her, believes in her and loves being around her. I know Terri has made a big difference in Ashley's life and has played a big part in helping her get through her anxiety. She has done this out of the kindness of her heart and we are forever grateful for her. She's one more example of the good in this world and the wonderful support system we have through this journey.
More updates to come...
Love,
Tony
Wednesday, July 23, 2008
Where do I begin?
There has been a reason for no journal entries the last few days. Some of you reading this may know, others may not. I will warn you in advance there is much for me to catch everyone up on so this entry will not be for the weary reader. Crystal's plea of keeping these short is going on deaf ears tonight.
First of all..it is Wednesday night and we are home in Noblesville. I have spent the last two days as an "in-patient" at the IU med center. We got home tonight and I finally have time (and energy) to write a post. Based on my last entry that may come as a complete surprise to most anyone...including Crystal and I.
Here is what happened....
After a long, but successful, day with the sodium bicarbonate on Saturday, Crystal and I woke up feeling great on Sunday. We did some sight seeing in Rome and enjoyed the day. Dr. Simoncini met us at our hotel at 5:00 to start I what thought would be another great treatment. We did the same as before, the dr. started the process and left me with nurse Crystal thinking that we would be in for another slow night of injecting sodium bicarbonate. I had pain as before. We would inject the fluid, I would raise my hand to stop, wait a few seconds and repeat the process.
After about 150 mls the problem started. The pain would not go away. We waited 15 mins, 30 mins, 1 hour, 1 1/2 hours doing everything I could to force any amount of fluid into my pump. The pain was bad--it was in my chest. I can only describe it as the worst heart burn you have ever had that won't go away. Reluctantly, I told Crystal I couldn't go on. We pulled the needle and we went to a quick dinner very disappointed.
We tried to pick ourselves up that night thinking the pain would subside by the morning. We would go to Vatican City in the morning and try again the next day. No big deal. I barely slept that night, the pain was terrible and there was no way I could sleep. Crystal woke up around 7 am and saw I was struggling. I knew there was no way I could do another treatment that day nor did I feel like site seeing. Something wasn't right and I knew I needed to get home. I couldn't risk having a major medical issue and have to go to an Italian hospital. We jumped on a plan at 10:15 and flew home.
The flight was long and painful. Not a good feeling being over the Atlantic ocean with major chest pains. Twenty-two hours later we landed safely in Indianapolis, happy to be close to family and medical help. I made it through the night with the help of a little aspirin, woke up early and headed to the IU Medical Center.
The hospital admitted me based on my symptoms and began running test on me. The good news was they gave me medication that nearly eliminated all the pain. The bad news was the day was slow. We still didn't have answers at 8 pm. If you don't know Crystal she is not afraid to "get an answer." They had her number that night because we couldn't get answers from anyone. We were tired, disappointed about the treatment, disappointed in the service at IU and obviously concerned about what was going on.
Doctors came in around 9 and said that all the test came back ok. There was no evidence of an embolism, heart trouble, liver function, etc. That was good, but unfortunately they still couldn't tell me what was causing my pain. They planned on doing an IR procedure where they check the flow of my arteries under "conscious anesthesia". They hoped to do that procedure today, but were to busy in the IR to get me in. As of now I am home with a few bottles of pain killers hoping to control the pain until we figure it out or it goes away. We still think it may be a "reflux" type of situation where the sodium bicarbonate is irritating the walls of arteries and it may just have to work it's way out. Time will tell.
In all of this chaos, we did get some good news. My tumors are stable and there is evidence that we may have even shrunk a couple of them. That is exciting news based on the trend I have been having and considering it's been four months since my last scan. We won't speculate just yet on how this may have happened, but needed some good news to help alleviate the disappointment of the last few days.
From here we have some options. We need to see what kind of flow we are getting to the tumors with the arterialgram (IR procedure). Once we have that info, we can either continue the sodium bicarbonate treatment here in the states (if the flow is good) or the latest news--resect the biggest tumor in my liver. The surgeon said she is willing to do this and based on the location is one of the "simplest" surgical procedures she performs. Again, exciting news that was not given to us as an option before. My surgeon believes that based on my age, my overall health, and the fact that there are only a few "large tumors" it would be beneficial to do everything I can to resect the large tumors and "deal" with the smaller ones that obviously have not grow very quickly over the past four years. This would eliminate any life threatening tumors at this point and "buy me time" to find other treatments and / or wait for new therapies to be released. We'll see what happens after the arterialgram.
We are home...have gotten over our disappointment and are ready for the next chapter. It's very difficult to be disappointed when coming home to two children who melt your heart. They did great while we were gone and we are so proud of them.
Thanks to all of you that continue to keep us in your prayers and continue to support us through these adventures. We strongly believe everything happens for a reason and once again are where we need to be.
With love,
Tony
First of all..it is Wednesday night and we are home in Noblesville. I have spent the last two days as an "in-patient" at the IU med center. We got home tonight and I finally have time (and energy) to write a post. Based on my last entry that may come as a complete surprise to most anyone...including Crystal and I.
Here is what happened....
After a long, but successful, day with the sodium bicarbonate on Saturday, Crystal and I woke up feeling great on Sunday. We did some sight seeing in Rome and enjoyed the day. Dr. Simoncini met us at our hotel at 5:00 to start I what thought would be another great treatment. We did the same as before, the dr. started the process and left me with nurse Crystal thinking that we would be in for another slow night of injecting sodium bicarbonate. I had pain as before. We would inject the fluid, I would raise my hand to stop, wait a few seconds and repeat the process.
After about 150 mls the problem started. The pain would not go away. We waited 15 mins, 30 mins, 1 hour, 1 1/2 hours doing everything I could to force any amount of fluid into my pump. The pain was bad--it was in my chest. I can only describe it as the worst heart burn you have ever had that won't go away. Reluctantly, I told Crystal I couldn't go on. We pulled the needle and we went to a quick dinner very disappointed.
We tried to pick ourselves up that night thinking the pain would subside by the morning. We would go to Vatican City in the morning and try again the next day. No big deal. I barely slept that night, the pain was terrible and there was no way I could sleep. Crystal woke up around 7 am and saw I was struggling. I knew there was no way I could do another treatment that day nor did I feel like site seeing. Something wasn't right and I knew I needed to get home. I couldn't risk having a major medical issue and have to go to an Italian hospital. We jumped on a plan at 10:15 and flew home.
The flight was long and painful. Not a good feeling being over the Atlantic ocean with major chest pains. Twenty-two hours later we landed safely in Indianapolis, happy to be close to family and medical help. I made it through the night with the help of a little aspirin, woke up early and headed to the IU Medical Center.
The hospital admitted me based on my symptoms and began running test on me. The good news was they gave me medication that nearly eliminated all the pain. The bad news was the day was slow. We still didn't have answers at 8 pm. If you don't know Crystal she is not afraid to "get an answer." They had her number that night because we couldn't get answers from anyone. We were tired, disappointed about the treatment, disappointed in the service at IU and obviously concerned about what was going on.
Doctors came in around 9 and said that all the test came back ok. There was no evidence of an embolism, heart trouble, liver function, etc. That was good, but unfortunately they still couldn't tell me what was causing my pain. They planned on doing an IR procedure where they check the flow of my arteries under "conscious anesthesia". They hoped to do that procedure today, but were to busy in the IR to get me in. As of now I am home with a few bottles of pain killers hoping to control the pain until we figure it out or it goes away. We still think it may be a "reflux" type of situation where the sodium bicarbonate is irritating the walls of arteries and it may just have to work it's way out. Time will tell.
In all of this chaos, we did get some good news. My tumors are stable and there is evidence that we may have even shrunk a couple of them. That is exciting news based on the trend I have been having and considering it's been four months since my last scan. We won't speculate just yet on how this may have happened, but needed some good news to help alleviate the disappointment of the last few days.
From here we have some options. We need to see what kind of flow we are getting to the tumors with the arterialgram (IR procedure). Once we have that info, we can either continue the sodium bicarbonate treatment here in the states (if the flow is good) or the latest news--resect the biggest tumor in my liver. The surgeon said she is willing to do this and based on the location is one of the "simplest" surgical procedures she performs. Again, exciting news that was not given to us as an option before. My surgeon believes that based on my age, my overall health, and the fact that there are only a few "large tumors" it would be beneficial to do everything I can to resect the large tumors and "deal" with the smaller ones that obviously have not grow very quickly over the past four years. This would eliminate any life threatening tumors at this point and "buy me time" to find other treatments and / or wait for new therapies to be released. We'll see what happens after the arterialgram.
We are home...have gotten over our disappointment and are ready for the next chapter. It's very difficult to be disappointed when coming home to two children who melt your heart. They did great while we were gone and we are so proud of them.
Thanks to all of you that continue to keep us in your prayers and continue to support us through these adventures. We strongly believe everything happens for a reason and once again are where we need to be.
With love,
Tony
Saturday, July 19, 2008
Day 4 in Rome..not a vacation
Day four has come and gone here in Rome. Not much news today as most of the day was spent in our new hotel. We had to switch hotels today (planned). Our initial plan was to wake up early and see some sites before treatment today at 4 pm. Unfortunately, Crystal and I overslept so we woke up and "moved." By the time we were settled into our new nest and ate lunch (Italians take their meals seriously...anything under an hour is fast food) our doctor was ready.
Treatment started at 4:45 and lasted until 9:15. The doctor left around 5:45 and nurse Crystal took over. Bless her heart she stayed with me while we pushed sodium bicarbonate 1 cc at a time into my port. We found today that if we go slow I don't have as much pain. Good news is there is less pain, bad news is it takes 41/2 hours. We are hopeful that it will get better over time. Regardless, my body is tolerating the treatment and we will take as long as needed to get it done.
We went to dinner after treatment and celebrated the long day. My doctor is not convinced that diet is an issue with cancer, so I stepped out of my protective shell for a night and ate bread, pasta and a DESSERT!!! Still no alcohol, which is painful here in Italy since they have before and after cocktails at every meal. Dr. Simoncini did agree alcohol was too harsh on the liver.
We must be getting better with the language or acting the part because we passed for Italians twice today. Still very little english where we are staying. After a few sentences though we go to hand gestures or pen and paper, but we sense we are getting better.
Overall not the most exciting day in Rome, but more progress. We'll keep you posted.
Love,
Tony
Treatment started at 4:45 and lasted until 9:15. The doctor left around 5:45 and nurse Crystal took over. Bless her heart she stayed with me while we pushed sodium bicarbonate 1 cc at a time into my port. We found today that if we go slow I don't have as much pain. Good news is there is less pain, bad news is it takes 41/2 hours. We are hopeful that it will get better over time. Regardless, my body is tolerating the treatment and we will take as long as needed to get it done.
We went to dinner after treatment and celebrated the long day. My doctor is not convinced that diet is an issue with cancer, so I stepped out of my protective shell for a night and ate bread, pasta and a DESSERT!!! Still no alcohol, which is painful here in Italy since they have before and after cocktails at every meal. Dr. Simoncini did agree alcohol was too harsh on the liver.
We must be getting better with the language or acting the part because we passed for Italians twice today. Still very little english where we are staying. After a few sentences though we go to hand gestures or pen and paper, but we sense we are getting better.
Overall not the most exciting day in Rome, but more progress. We'll keep you posted.
Love,
Tony
Friday, July 18, 2008
Day 3 in Rome...progress
I don't have much time tonight because my internet minutes are fading fast. Crystal tells me I need to be more brief anyway so here's my chance. I've warned from the very beginning that I can be long winded so no apologies from me.
I told Crystal tonight that this will be a day I won't ever forget. Today may have been one of the most interesting and different days I've ever been involved in. We went from shopping on streets that had stores like Gucci, Valentino, Dolci, Fendi, etc., (no purchases of course), ate lunch in front of the Pantheon, travelled to the southern tip of Rome (the suburbs) and spent three hours in a hospital, went for a "snack" in a cafe where no there was no english, had sodium bicarbonate treatment on my hotel bed, and went to a very nice Italian dinner in the evening (again--no english). I'll bet anyone out there they can't match that day!
As far as treatment...my doctor wanted to make sure the port was working so the radiologist saw me today and injected dye under flouroscopy to verify everything was working. He convinced my doctor he should use my port, which he did. Unfortunately when injecting the sodium bicarbonate into my port it creates painful pressure into my chest. It's not the sodium bicarbonate that creates the pressure (the dye did the same thing), it's apparently the way my arteries are reacting to fluid when using my pump. It's a little bit of a mystery, but we're getting through it. We were able to do the treatment, but it is slow and a little painful at times and makes me a tad nauseous. In order to make sure everything is ok, we only did about 1/4 of the treatment tonight. We are going to try to increase it each day. After treatment I am fine...no pain, no side effects---just a little dicey during.
Good news is we spent about 4 hours with the doctor today and really got to know him. He his a great man, very compassionate about what he is doing and really cares about his patients. He gets calls from all over the country throughout the day. I could write a long, long time about him, but will spare everyone the details for now.
We are going to do treatment again tomorrow at 4:00. We hope that it gets better each day. We change hotels tomorrow, so hoping that we have continued access to e-mail. If I don't journal it is because the hotel we are going to does not have internet access. Communications here (both phone and internet) has been a learning experience.
More updates soon...
Love,
Tony
I told Crystal tonight that this will be a day I won't ever forget. Today may have been one of the most interesting and different days I've ever been involved in. We went from shopping on streets that had stores like Gucci, Valentino, Dolci, Fendi, etc., (no purchases of course), ate lunch in front of the Pantheon, travelled to the southern tip of Rome (the suburbs) and spent three hours in a hospital, went for a "snack" in a cafe where no there was no english, had sodium bicarbonate treatment on my hotel bed, and went to a very nice Italian dinner in the evening (again--no english). I'll bet anyone out there they can't match that day!
As far as treatment...my doctor wanted to make sure the port was working so the radiologist saw me today and injected dye under flouroscopy to verify everything was working. He convinced my doctor he should use my port, which he did. Unfortunately when injecting the sodium bicarbonate into my port it creates painful pressure into my chest. It's not the sodium bicarbonate that creates the pressure (the dye did the same thing), it's apparently the way my arteries are reacting to fluid when using my pump. It's a little bit of a mystery, but we're getting through it. We were able to do the treatment, but it is slow and a little painful at times and makes me a tad nauseous. In order to make sure everything is ok, we only did about 1/4 of the treatment tonight. We are going to try to increase it each day. After treatment I am fine...no pain, no side effects---just a little dicey during.
Good news is we spent about 4 hours with the doctor today and really got to know him. He his a great man, very compassionate about what he is doing and really cares about his patients. He gets calls from all over the country throughout the day. I could write a long, long time about him, but will spare everyone the details for now.
We are going to do treatment again tomorrow at 4:00. We hope that it gets better each day. We change hotels tomorrow, so hoping that we have continued access to e-mail. If I don't journal it is because the hotel we are going to does not have internet access. Communications here (both phone and internet) has been a learning experience.
More updates soon...
Love,
Tony
Thursday, July 17, 2008
Day 2 in Rome
Quite a few ups and downs today in Rome. We woke up after a great nights sleep, went to breakfast in the hotel (complimentary) and waited for the doctor to come.
UP :))) He came at 1:30 and we talked for about 30 mins about my situation. It was great to finally meet him and talk to him in person. His english was much better in person. After we talked he said he would return in two hours and we would begin the procedures (he didn't initally bring his supplies because he needed to make sure, in his terms, I was not a "spy"). Crystal and I hadn't left the hotel yet, so we walked to a local cafe for lunch and got ready for what we thought would be a great day.
DOWN :(((( We got back to the hotel and the doctor came around 4:00. I laid on the bed, he had all of his supplies ready. He started putting fluid into the catheter and it started running down the side of my abdomen. We got through the bandages I had been wearing for a few days and found that the needle had come out. Talk about a kick in the gut. The doctor didn't know anything about this pump so he wouldn't even consider poking a needle into the reservoir he can't see under my skin. I am about as squimmish of a person as anyone and I came pretty close to poking myself. I came all this way, had this doctor in front of me and no current way to get the treatment.
He tried to call his radiologist to see when he could look at me to either access my current port or surgically insert another port. The moment didn't get much better--the radiologist did not answer. The doctor left and said he would call us as soon as he heard from the radiologist. We were stuck in the hotel after receiving no treatment wondering what we were going to do.
Fortunately the doctor called after about 30 minutes. More bad news...the radiologist was booked for the day and wasn't sure if he would be able to get us in until Monday. He was going to try for tomorrow, but it didn't sound promising. Needless to say...this was not in our plans. After a little bit of sadness and anger, Crystal and I decided there was nothing we could do about it at the moment, so we set off to the center of Rome to try to have a good evening.
Good news is we did have a good evening, bad news is we still don't have a very good feel on what to do. Regardless we are going to have to perform a portion of the protcol when I get home. I am confident that the doctor will provide me what I need, the question becomes do we stay in Rome to start his protocol or do we jump on a plane with the supplies and try to do this at home. We have decided to talk to the doctor tomorrow. We also have a call into my surgeon at IU Med to get her opinion. After we get all of the information we need we will be able to make a logical decision (hopefully tomorrow).
Wish I had better news...we are bummed, but hanging in there. I've decided to buy a scooter when we get home since everyone here owns one. Crystal is looking forward to riding on the back with her dress on. We have formulated an opinion on Rome today after our evening. Rome is great--it has a great feel, everyone seems happy, relaxed and just enjoying life. We needed a little of that tonight, so felt like we were in the right place regardless of the situation.
More updates tomorrow...
Love ,
Tony
UP :))) He came at 1:30 and we talked for about 30 mins about my situation. It was great to finally meet him and talk to him in person. His english was much better in person. After we talked he said he would return in two hours and we would begin the procedures (he didn't initally bring his supplies because he needed to make sure, in his terms, I was not a "spy"). Crystal and I hadn't left the hotel yet, so we walked to a local cafe for lunch and got ready for what we thought would be a great day.
DOWN :(((( We got back to the hotel and the doctor came around 4:00. I laid on the bed, he had all of his supplies ready. He started putting fluid into the catheter and it started running down the side of my abdomen. We got through the bandages I had been wearing for a few days and found that the needle had come out. Talk about a kick in the gut. The doctor didn't know anything about this pump so he wouldn't even consider poking a needle into the reservoir he can't see under my skin. I am about as squimmish of a person as anyone and I came pretty close to poking myself. I came all this way, had this doctor in front of me and no current way to get the treatment.
He tried to call his radiologist to see when he could look at me to either access my current port or surgically insert another port. The moment didn't get much better--the radiologist did not answer. The doctor left and said he would call us as soon as he heard from the radiologist. We were stuck in the hotel after receiving no treatment wondering what we were going to do.
Fortunately the doctor called after about 30 minutes. More bad news...the radiologist was booked for the day and wasn't sure if he would be able to get us in until Monday. He was going to try for tomorrow, but it didn't sound promising. Needless to say...this was not in our plans. After a little bit of sadness and anger, Crystal and I decided there was nothing we could do about it at the moment, so we set off to the center of Rome to try to have a good evening.
Good news is we did have a good evening, bad news is we still don't have a very good feel on what to do. Regardless we are going to have to perform a portion of the protcol when I get home. I am confident that the doctor will provide me what I need, the question becomes do we stay in Rome to start his protocol or do we jump on a plane with the supplies and try to do this at home. We have decided to talk to the doctor tomorrow. We also have a call into my surgeon at IU Med to get her opinion. After we get all of the information we need we will be able to make a logical decision (hopefully tomorrow).
Wish I had better news...we are bummed, but hanging in there. I've decided to buy a scooter when we get home since everyone here owns one. Crystal is looking forward to riding on the back with her dress on. We have formulated an opinion on Rome today after our evening. Rome is great--it has a great feel, everyone seems happy, relaxed and just enjoying life. We needed a little of that tonight, so felt like we were in the right place regardless of the situation.
More updates tomorrow...
Love ,
Tony
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Wednesday, July 16, 2008
We made it to Rome.
Crystal and I made it to Rome today. Our day today was fairly uneventful. We spent most of the day trying to figure out the "lay of the land", how to communicate to people, and how to use a phone. Throw in a 3 hour nap once we got here and you have a full day.
We're still very tired tonight, didn't get much sleep on the flight over so we're ready for bed tonight. We're six hours ahead of the US, so it will be nice to go to sleep at 6 pm tonight (US time).
We are in northern Rome and didn't venture to far from our hotel. The people here speak ok English, but not as good as I thought. Many of the people we ran into today didn't speak english at all. I think once we get into the center of the city we will have better communication. Good news is we are out of the touristy areas right now, bad news is we are out of the touristy areas. We got to see some nice shops and eat lunch and dinner at authentic Italian cafes / restaurants. So far so good, all the people are very nice and helpful. I'm sure we'll formulate a positive or negative opinion of the country soon, but no complaints thus far.
I did get a chance to call my doctor today and he is coming to our hotel tomorrow between noon and 3. We were hoping to see him in the morning, but I'm just anxious to see him so any time will work. So far the "leap of faith" thing is working. I'm sure tomorrow I will have more news on what I am doing and what I can expect the rest of the time we are here.
More updates tomorrow...
Tony
We're still very tired tonight, didn't get much sleep on the flight over so we're ready for bed tonight. We're six hours ahead of the US, so it will be nice to go to sleep at 6 pm tonight (US time).
We are in northern Rome and didn't venture to far from our hotel. The people here speak ok English, but not as good as I thought. Many of the people we ran into today didn't speak english at all. I think once we get into the center of the city we will have better communication. Good news is we are out of the touristy areas right now, bad news is we are out of the touristy areas. We got to see some nice shops and eat lunch and dinner at authentic Italian cafes / restaurants. So far so good, all the people are very nice and helpful. I'm sure we'll formulate a positive or negative opinion of the country soon, but no complaints thus far.
I did get a chance to call my doctor today and he is coming to our hotel tomorrow between noon and 3. We were hoping to see him in the morning, but I'm just anxious to see him so any time will work. So far the "leap of faith" thing is working. I'm sure tomorrow I will have more news on what I am doing and what I can expect the rest of the time we are here.
More updates tomorrow...
Tony
Sunday, July 6, 2008
Quick clarification note
I regret that I didn't make note of the month Crystal and I will be leaving for Rome on the last journal entry. To clarify...we will be leaving July 15th and coming home July 25th. I can't believe it's almost a week away! When I first made contact with the doctor in Rome he said I could come see him before July 5th of after July 16th. Basically I couldn't get everything in order before July 5th so we told him we would see him July 17th.
The sooner the better...I feel a little in limbo right now. There was a time when I was going through chemo where it was almost more difficult to be off of chemo than being on chemo. I've learned cancer is a very mental disease, psychologically if you are off treatment you are constantly concerned with what the tumors are doing. I work hard now not to think of the "what ifs", but I must confess that in the past I've made some calls to my oncologist about crazy aches and pains while off of chemo. Needless to say I'm excited to get started on "treatment", although I'm still doing my natural therapies two times a week.
Tonight I must add one of many "thank yous" that I am sure will be in this journal. My neighbors, Joe and Dena, hold a prayer group on Sunday nights at their house. Dena knocked on our door tonight and asked if I would come down for a prayer. I'm touched by these moments with a group of people that only know my story and are willing to reach out to me with their support. Also the other day I had a door to door salesman come to the door selling books. We talked a little and in conversation I briefly mentioned to him what I was going through. He asked to pray with me before he left, which I don't think is a normal sales tactic. I'm sure my other neighbors didn't appreciate this guy as much as me, but at the moment, for me, was something I really appreciated.
I am no where near having the words to express my appreciation and support from everyone. The personal e-mails, the e-mails to Crystal, the phone calls, the guestbook entries, and prayers are overwhelming. I want to be clear that it is a "good" overwhelming. I'm sure I'll say this a thousand times in this journal, but I always knew I had a strong support system, but had no idea how many people are rooting for me. No words (at least tonight), except a simple "thank you".
With love...Tony
The sooner the better...I feel a little in limbo right now. There was a time when I was going through chemo where it was almost more difficult to be off of chemo than being on chemo. I've learned cancer is a very mental disease, psychologically if you are off treatment you are constantly concerned with what the tumors are doing. I work hard now not to think of the "what ifs", but I must confess that in the past I've made some calls to my oncologist about crazy aches and pains while off of chemo. Needless to say I'm excited to get started on "treatment", although I'm still doing my natural therapies two times a week.
Tonight I must add one of many "thank yous" that I am sure will be in this journal. My neighbors, Joe and Dena, hold a prayer group on Sunday nights at their house. Dena knocked on our door tonight and asked if I would come down for a prayer. I'm touched by these moments with a group of people that only know my story and are willing to reach out to me with their support. Also the other day I had a door to door salesman come to the door selling books. We talked a little and in conversation I briefly mentioned to him what I was going through. He asked to pray with me before he left, which I don't think is a normal sales tactic. I'm sure my other neighbors didn't appreciate this guy as much as me, but at the moment, for me, was something I really appreciated.
I am no where near having the words to express my appreciation and support from everyone. The personal e-mails, the e-mails to Crystal, the phone calls, the guestbook entries, and prayers are overwhelming. I want to be clear that it is a "good" overwhelming. I'm sure I'll say this a thousand times in this journal, but I always knew I had a strong support system, but had no idea how many people are rooting for me. No words (at least tonight), except a simple "thank you".
With love...Tony
Wednesday, July 2, 2008
We're officially going to Rome!
Last night we made it official...we're going to Rome. We really couldn't wait much longer to book a flight so the day came yesterday--go or no go. After weeks of research and hunting down this doctor I didn't even consider "no go."
I have to be honest, we're still a little anxious about the trip. We're excited about the procedure but still don't know what to expect. It's one of those times where you have to trust your instinct and be able to let go of being in control. Not easy to do, but I keep telling myself that I have to get in front of this doctor no matter what. I've been given an opportunity to do that so I don't want to pass it up.
The one outstanding issue is how this doctor is going to access me. I have two ports...both internal. One in my upper right arm I used for chemo and still use for my natural therapies. I tell everyone they should have a port--much better than getting poked in the veins and the best way to get your vitamins. Unfortunately the doctor in Italy can't use this port because it is a venous port and he needs an arterial port.
Luckily my other port is an arterial port. It is in my lower abdomen and is connected to my hepatic artery (the artery that goes directly into your liver). Initially we did not think we could use this port (the hepatic artery port) because it is "programmed" to release a certain amount of fluid each day into my liver (5cc). Perfectly good "program" for chemo (which I was using it for), but not so perfect for sodium bicarbonate (which is what the doctor in Italy will be using). I understand that he wants to deliver 500cc in 30 minutes.
I am working with my surgeon here in Indianapolis on a way to by-pass the programmed amount the pump will allow. We think we can do this through a side access in the pump. My surgeon has agreed to access my port and leave an external catheter so the only thing the doctor in Italy will have to do is "hook" me up. I'll know next week. Good news is I probably wouldn't have to have any "surgical" procedures in Italy, bad news is I would have an uncomfortable catheter to deal with for 10 days. Hopefully I'll have my choice and I vote for the latter of the two.
So the trip is scheduled for the 15th and we will return on the 24th. Two days of travel and eight straight days with the doctor. The doctor is telling me the treatments may make me tired and / or thirsty, but other than that I should be ok. I know we are going to Rome to get medical treatment, but hopeful that I will feel up to seeing some of the city. It's not every day that you get a chance to go to Rome. Would be nice to hang out with the Pope for a day.
I want to quickly thank everyone again for the outpouring of support. I always knew I had a strong support system, but I'm now being reminded on how lucky I really am. I wouldn't be where I am without all of you.
I'll try to keep everyone updated. If you haven't noticed thus far I'm not afraid to type so if you like succinct journal entries you're in the wrong place. Talk to you soon.
With love....Tony
I have to be honest, we're still a little anxious about the trip. We're excited about the procedure but still don't know what to expect. It's one of those times where you have to trust your instinct and be able to let go of being in control. Not easy to do, but I keep telling myself that I have to get in front of this doctor no matter what. I've been given an opportunity to do that so I don't want to pass it up.
The one outstanding issue is how this doctor is going to access me. I have two ports...both internal. One in my upper right arm I used for chemo and still use for my natural therapies. I tell everyone they should have a port--much better than getting poked in the veins and the best way to get your vitamins. Unfortunately the doctor in Italy can't use this port because it is a venous port and he needs an arterial port.
Luckily my other port is an arterial port. It is in my lower abdomen and is connected to my hepatic artery (the artery that goes directly into your liver). Initially we did not think we could use this port (the hepatic artery port) because it is "programmed" to release a certain amount of fluid each day into my liver (5cc). Perfectly good "program" for chemo (which I was using it for), but not so perfect for sodium bicarbonate (which is what the doctor in Italy will be using). I understand that he wants to deliver 500cc in 30 minutes.
I am working with my surgeon here in Indianapolis on a way to by-pass the programmed amount the pump will allow. We think we can do this through a side access in the pump. My surgeon has agreed to access my port and leave an external catheter so the only thing the doctor in Italy will have to do is "hook" me up. I'll know next week. Good news is I probably wouldn't have to have any "surgical" procedures in Italy, bad news is I would have an uncomfortable catheter to deal with for 10 days. Hopefully I'll have my choice and I vote for the latter of the two.
So the trip is scheduled for the 15th and we will return on the 24th. Two days of travel and eight straight days with the doctor. The doctor is telling me the treatments may make me tired and / or thirsty, but other than that I should be ok. I know we are going to Rome to get medical treatment, but hopeful that I will feel up to seeing some of the city. It's not every day that you get a chance to go to Rome. Would be nice to hang out with the Pope for a day.
I want to quickly thank everyone again for the outpouring of support. I always knew I had a strong support system, but I'm now being reminded on how lucky I really am. I wouldn't be where I am without all of you.
I'll try to keep everyone updated. If you haven't noticed thus far I'm not afraid to type so if you like succinct journal entries you're in the wrong place. Talk to you soon.
With love....Tony
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