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

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

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

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

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

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

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

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

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

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

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

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

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