MT's Cancer Blog

10th Trip to CTCA

mike@newvaliant.com — 2011-06-20T00:00:00-05:00

I returned to CTCA on Sunday, June 19th to have a CT/PET scan.

Tuesday, I got the results of my blood work and PET scan. My tumor markers had gone up about 500% from what they were 6 weeks ago. My PET scan showed that the cancer has become pretty active in my liver again so I went back on chemo today. My oncologist said we are about where we were when I started coming to CTCA back in December 2010. He also said we will start with 6 cycles of chemo. So this is not the greatest news and it’s a setback, but they are going to happen. After all, it’s cancer and until there’s a cure there will always be huge leaps back to the beginning

8th Trip to CTCA

mike@newvaliant.com — 2011-04-11T00:00:00-05:00

7th Trip to CTCA

mike@newvaliant.com — 2011-03-30T03:18:13-05:00

CTCA 7th Trip

Well, after 7 months of chemo, things have become fairly routine.

I returned to CTCA on Tuesday after my 3 week break from chemo. Yesterday, I saw Dr Jag to go over the results of my CT/PET Scan. I’m happy to report that my cancer is now about 90% dormant. My tumor markers are down to 57. We are winning this fight and kicking cancer’s butt!

There was a little set back this week though. I spent 3 weeks I had off having some pretty bad pain in my side. The pain was just like I had before I was diagnosed, except it is in my left side instead of right. Today I found out what is causing the pain. My spleen is enlarged. At first Dr. Jag thought it may be ruptured, but after talking to the radiologist and going back over my CT scans he determined it was not. Dr Jag came back into the room and explained that my spleen will have to be removed. I don’t know what caused it. I think I sort of “zoned out” during that part of the conversation. All I heard was surgery. I think he said chemo was the culprit.

I will have to be off of chemo for a while longer before they can do surgery. So the good news in this is that I will be off of chemo for about another 6 weeks.

I come back on April 11th to have my spleen taken out. That should be a lot of fun. Until then I will be enjoying my time off from chemo.

The Cost of Cancer

mike@newvaliant.com — 2011-02-28T00:52:05-06:00

The Cost of Cancer

As promised, I wanted to do a “report” covering “The Cost of Cancer”. Let me start by saying I believe that cancer is the most expensive disease out there. I have not researched the topic that much so I’m just guessing here.

I was always taught that life was precious and priceless. Let me tell you, hospitals have figured out a way to put a price on it, for sure. The figures below are from my actual bills. When I was first diagnosed with cancer in August 2010 it took the entire month of July to get that diagnoses. I didn’t really keep up with the cost then. This is because we were so distraught about getting a cancer diagnoses, the cost didn’t matter. That was of course until it was time to start paying the bills.

When I started chemotherapy at Vanderbilt each treatment ran a little over $10,000.00 every other week. Unfortunately the treatments weren’t helping all that much. My tumor markers were going up instead of down. They didn’t put me on one chemo drug that I needed because I was either pre-op, post-op or they were worried about my blood pressure.

After the phone call from Vanderbilt saying they had done all they could do etc etc. I called Cancer Treatment Centers of America. If you have read any of my blog, you know how I feel about them. I’ll go ahead and say it again here. They are the best cancer treatment option available.....period. Of course that’s my opinion, and the opinion of every patient I’ve spoken with.

So going back to the cost here. My first visit to CTCA was for an evaluation. I spent about 8 days there. When I got the bill, I thought there was some sort of mistake. It was for $83,000.00. This does not include the out of pocket expenses. I have to pay for my room, naturopathic medicines and food out of pocket as they occur.

When I got the next bill it was for $87,000.00. Looking at the bill I found that one of my chemo drugs is $57,000.00 alone. I get 4 chemo drugs. If you are keeping count, that’s $170,000.00 per month for treatment. Again, I’m not sure how that compares to other diseases or even trauma, but I know it has to be quite high on the list.

Yes, I’m one of the lucky ones. My insurance covers 90%. I know there are a lot of people that are not able to go to CTCA because their insurance will not allow it. I feel deeply sorry for them. Going back to my insurance paying 90%; That still leaves about $17,000.00 per month out of pocket not including what insurance does not cover.

So I want to move on from the “Cost of Cancer” to how to get help paying for it. We have checked into all (I think) of the non-profits “helping” with cancer. I don’t want to introduce negativity into my blog. But. All but a couple of organizations do not help cancer patients. yes, you read that right. The organizations raise money for cancer research. We are talking about over a billion dollars per year raised just for research. This leads me to ask; If a large portion of cancer research is funded via “donations” and non-profits, then why are chemo drugs so expensive? The drug companies say the cost of a drug is to pay for research. Something just does not add up there, if you ask me. But I have to stop talking about it, here because it just upsets me.

So on a positive note, I’m doing a bit of research on starting a non-profit just to help cancer patients pay for their treatment. None of the money would go to research. If you have any information or would like to help in some way, please contact me. I don’t want to see a cancer patient turned away from treatment, or have worry about paying rent, mortgage, utilities etc, or get chemo. Again, if you can help in some way please contact me. I know for a fact we are going to need legal help. Once we get this up and going we are going to need to get the word out to potential donors and recipients.

I really want to “give back” or “Pay it forward” or whatever it’s called. I have several projects that I want to see come to life and that is one of them. I’ve already started my other “cancer project”. It includes working with my oncologist to answer some of the questions people have about cancer. It’s called “Dr Jag’s Cancer Answers” and you can see what we are doing here.

As always, thank you for all of your support and prayers. Everything is looking good for me right now so the prayers are working. If you have any questions or comments you can leave them here or e-mail me directly.

6th Trip to CTCA

mike@newvaliant.com — 2011-02-22T17:10:33-06:00

Well, first I must apologize for not giving a mid-week update like I said. One problem is that when I’m at home, I try not to think about cancer that much. It doesn’t work most of the time but worth a shot anyway. I’m going to try and post more often. I probably put too much information in each post anyway. Maybe I can break them up into smaller post

So this is my 6th trip to CTCA. Wow! It does not seem like I’ve been coming here that long. I’m writing this part of the blog before I have been in to see Dr. Jag, so I really don’t have any new information right now.

So let me tell you about my journey here. I have been traveling back and forth on Southwest since the second time. It seems that most of the planes I get on have mechanical problems of some kind. It can be anything from “a light out” to having to swap out planes. Last night was no exception. The first flight was unremarkable. We flew from Nashville to St. Louis where I changed planes to continue on to Tulsa. When they shut the door, everyone started smelling something burning. It really wasn’t a good sign. They quickly opened the door and started checking things out. After a short time, the captain picked up the intercom and said, “I just wanted to let everyone know what’s going on. I think the air system sucked up some plastic or something and I think that’s what we all smelled burning. I’ve called a mechanic to check it out.” The mechanic came down looked around for a couple of minutes. I guess he didn’t find anything, so we were cleared to take off in that same plane.

Well, I’m getting ready to go for my oncology appointment so I will post more on this visit when I get back.

So I just got back from seeing Dr. Jag. The good news is that my tumor markers are down to 64 (from 87). It’s not as much as we were expecting, but the numbers are down. I’m thankful for that. Dr Jag is increasing my chemo dose this time to kill these pesky little boogers. I’m not responding as well to the new chemo as I was, which is the reason for the increase. I don’t really like being down here....but; that means the side-effects are going to be increased as well. To quote Dr. Jag, “It is going to be fun for you.” Which I believe, because the new chemo drug hasn’t been too much fun so far.

I do get time off from chemo, but it’s not what I was expecting. I was thinking at least a month or two. I’m only getting 3 weeks off. I shouldn’t complain. It is three weeks after all. Then when I come back on March 15, I’ll have a CT scan then a PET Scan. Then on March 17th I start back on chemo.

Dr Jag did however say we were going to do 6 more cycles of chemo then probably HAVE to take a break. My blood is quite toxic at the moment. Plus my red and white blood cell and platelet counts are pretty low. I get a couple of shots when I finish chemo to make my body produce more red and white blood cells and platelets. The shots are working which allows me to continue getting chemo.

5th Trip to CTCA - GREAT NEWS!

mike@newvaliant.com — 2011-02-07T03:18:28-06:00

5th trip to CTCA

Well this is an interesting trip so far. When I left home on Sunday, it was a nice 54º. When I got off the plane in Tulsa it was 35º and lots of snow on the ground. In some spots the snow had drifted to about 4 feet. It has been on the ground since the first of last week, so a lot had already melted. I think this is the largest amount of snow on the ground I have ever seen.

The weather people in Tulsa are calling for 7-14 inches of snow starting on Tuesday night. It should be interesting to see if I can get home on Thursday. Since they are calling for more snow at home as well during the same time frame, I don’t see getting home before the weekend.

My Oncology Visit

There were only early appointments so I had to fly in on Sunday night instead of Monday morning. I saw all of my care team today (Monday) including Dr. Jag. The great news is that my tumor markers are now down to around 84. I forgot the actual number and haven’t gotten a copy of my medical records yet.

Dr Jag changed plans a little. Instead of doing a CT of my liver as planed on my next visit I will have chemo like normal. After the next cycle he is going “to give me a break for a little while”. I think the “break” means no chemo for about a month. (Yea!!!) This is to get rid of some of the chemo in my system and will help prep me for another PET Scan. From what I understand, if you have too much chemo in your system during a PET Scan it will give false negative readings.

This is awesome news! He said I am responding very well to the chemo regiment he has me on. Remission looks closer than ever now.

I feel a lot better than I did when I started coming here. With the cancer becoming more and more “dormant” my energy is better and I just plain feel better. The new chemo kicked my butt last time. This time they took a lot more precautions and it seems to be a lot better. Thanks Daniel!! You are my naturopath hero!

I still need to go to the pharmacy and pick up several things to help with the new side-effects. Since the pharmacy is closed now, I will do that in the morning. They might frown on me doing any after hours shopping. :-)

I will try to post some mid-week updates from now on. I have to admit, that once I get home I try to forget about the cancer, the treatments, the chemo and just live “normal” a little.

I’m working on getting away from everything in our lives revolving around the disease. It’s really hard to do since it has changed every aspect of who we are. I think in some instances it has made me a better person. I have changed the way I look at most everything in my life now. Before, life was sort of like a race. You get up and rush to get things done. It does not matter whether it’s something for home or work. The goal was to finish. Now I try to make it about the journey. I wake up every morning and thank God for giving me another day. I used to be so worried about what people thought about me that I would not go out in public. Now, I don’t have the time or energy to care what people think. At some point today, stop and think about what you would do if your tomorrow might not come.

Thank you so much for reading my ramblings, dealing with my poor grammar and run-on sentences.

4th Trip to CTCA

mike@newvaliant.com — 2011-01-24T22:00:00-06:00

My day started early this morning. Just like it does every other Monday. Get up at 3:30am. Arrive at the airport at 4:30. Check baggage and go through security. Sometimes I get through pretty quick and have to wait at the gate for an hour or so. Sometimes there is no waiting at the gate. This morning was not busy at all and I got through security and waited at the gate for about an hour and a half. My flight departed at 6:25am.

It’s always takes a long time getting to Tulsa because there are not any non-stop flights from Nashville. I’ve searched all of the airlines and you always have to go somewhere else to start. This time I found a flight on SouthWest that made two stops, but no plane change. Which seemed like a great idea. I hate landing then having to navigate your way through an airport for what seems like miles.

Anyway, this flight departed at 6:25 and had two stops. One in Houston (SouthWest headquarters) then another in Dallas and finally arriving in Tulsa at 11:20am. Then it’s about 25 minutes to CTCA from the airport. Because of mechanical problems on the plane we were about 20 minutes late getting to Tulsa. This meant that I didn’t get to CTCA until about 12:30pm.

I only bring this up because the first appointment on my very long Monday was at 12:15pm. CTCA has literally become a second home for me. Everyone here seems to know me. Walking around all, of the staff greets you. Most of them calling you by name. That’s pretty impressive to me.

I got checked in and quickly dropped off my bags in the room. Then went to registration and got my armband. Then it was off to infusion to get my port accessed and blood drawn. While I was doing this, I discovered that I had missed two appointments. Both with Physical Therapy. So they were rescheduled for Tuesday.

Since I had a couple of minutes before seeing my oncologist, I dropped by the cafe and got some lunch. You have to give the lab about an hour to run all the blood test. This is one very important tool my oncologist uses to see if I can have this cycle of chemo.

2:30pm I’m in Dr. Jag’s office. My CEA (Tumor Markers) are down to 133.9. This is even after not getting Oxaliplatin (one of my chemo drugs) last time because of the anaphylactic reaction. We are still headed in the right direction which is great news. So between 2:30pm and 5:30pm I saw all of my great and wonderful care team. This includes, my oncologist, nutrition, naturopath and my nurse care manager. When I left there, I headed back to infusion to see if my chemo was ready. It takes about 2 hours from the time I see my oncologist for the pharmacy to mix all of my drugs and have them ready to go. Since they were still pending I went back to the cafe to get a light dinner before starting. When I went back to infusion, everything was ready to go. After getting hooked up it takes about 5 hours to receive the first part of my chemo. Around 9:30pm I was disconnected from that and hooked up to a portable pump with a chemo drug called 5-FU. I keep that for 46 hours. I think the hardest part of carrying around the portable pump is that I feel like I’m on a leash. I’ll forget and leave it sitting on my desk, start to walk away, then get a big jolt in my chest when I run out of IV tubing. Not the greatest feeling in the world, but it will definitely keep you on your toes.

Because they had to change one of the chemo drugs, I’ve had it pretty rough with side effects this time. I cancelled all of my appointments on Tuesday because I was too sick to leave my room. I’m writing this on Wednesday the 26th. As of now things are a lot better than yesterday. I still feel pretty bad, but it’s all worth it. As long as my tumor markers keep coming down and we are headed in the right direction. That all that matters. If everything keeps going like it is and we don’t hit any more “bumps in the road”, I might be looking at remission in about 6 months. I know it’s still too early to be thinking about it but you need to have something to look forward to. I’ve always needed a goal to work toward and since there is no cure for me, remission is the goal.

Thanks for reading. And as always, Thank you so much for your prayers and support, you will never know how much it means to us.

If you have any questions, comments or concerns please e-mail me at cancer@newvaliant.com

3rd Trip to CTCA

mike@newvaliant.com — 2011-01-09T22:00:00-06:00

Because of the in coming snow, I decided to change my flight and leave out a day early. It was a good thing too. On Monday, Bobbie sent me photos of the 6-8 inches of snow that fell late Sunday night. I would have never make it out had I not changed flights.

The flight out was long as usual, and even longer because both of the planes had mechanical problems. Both of them had to be swapped out. Only the airline knows the definition of “Mechanical Problem”. It could be something as simple as a malfunctioning warning light to an engine getting ready to fall off. We always hope for the former.

Monday was a lot easier to deal with because my appointments didn’t start until 11:30am. So I was able to get a full night sleep on Sunday. It was still a full day.

I saw my wonderful team starting at 11:30am. Everything is going great. My CEA (aka. Tumor Markers) are down to 180.1.

I had a reaction to one of my medications last time. They suspect I have developed an allergic reaction to Oxaliplatin, so Dr Jag ordered some additional medications to have ready beside me just in case I started having trouble again.

Everything started out pretty well. I got all of my pre-meds as usual, which always makes my quite sleepy. Because of all the snow Bobbie couldn’t get to work. So she called to video chat with me on Skype. While I was talking to her, James, my nurse came in and changed my bags out. I wasn’t paying attention to him because I was on the phone. Less than a minute after he left I started getting really short of breath and could feel my throat closing up. I didn’t want Bobbie to see what was about to happen so I told her I was sleepy and was going to take a nap. I had already reached around and had the IV tubing in my had. As soon as I pressed end on the call, I shut down the IV. Things got pretty bad for a few minutes. It seemed like hours. James was right there as soon as I shut it down. He administered all of the medications and after a little while I started feeling a little better. I got pretty sick afterwards but things were better by the time I left infusion around midnight.

Tuesday was a big day as well. I had several appointments with Physical Therapy and one with acupuncture, which I had never tried. I don’t know if it was one thing or a combination of both, but man I felt a lot better afterwards.

On the last visit, Dr Jag and I made plans to shoot some short videos answering questions on FaceBook. You can see the episodes on FaceBook or just click here. I brought in some of my gear, camera, lighting, microphones etc. We got together around 7:00pm and had 5 “episodes” shot by 10:30-11:00pm. I came back to my room and started editing the footage. Getting all of the graphics I created put together. It was a lot of fun for me. This is what I was doing before I got sick back in July. Then after my cancer diagnosis in August, I just lost interest in everything. I didn’t pick up a camera and couldn’t even think about anything except this huge thing called cancer I was faced with. So I had a pity party for a few months. That is until I got to CTCA. Even though my condition was the same, they gave me hope. And they gave me my life back. Now I sound like one of the commercials. Believe me when I say it’s all true. I know the commercials for this place are a bit on the corny side, but I don’t think they are corny enough.

Even with the set back this time, we are still headed in the right direction. My blood is pretty messed up right now and I’ve having to get some shots so my body makes more white blood cells and platelets. My immune system is really down right now and I guess I shouldn’t be playing with knives or getting cut, but it’s all to be expected. The medicine they are giving me is bringing my blood counts up a little.

Thanks for reading. And as always, Thank you so much for your prayers and support, you will never know how much it means to us.

If you have any questions, comments or concerns please e-mail me at cancer@newvaliant.com

2nd Visit to CTCA

mike@newvaliant.com — 2010-12-27T22:00:00-06:00

December 27, 2010 - Second trip to Cancer Treatment Centers of America

Monday started at 3:00am when I got up to get ready to go to the airport. I arrived at the airport at 4:30am. Man I’m glad I did too. I didn’t take into count the amount of people that would be headed home after the holidays. Then there was the bad weather across the northeastern part of the US. I was in line for over 40 minutes waiting to get my boarding pass. Then I spent quite a long time waiting to go through security. My flight left at 6:00am and I think I got to the gate about 10 minutes before.

We landed in Tulsa, OK at 11:05am, My regular driver was waiting for me at baggage claim. Registration was at 11:15am, but since it’s about a 25 minute ride from the airport to CTCA I was going to be a bit late. This meant that I was going to be a little rushed for time after arriving. I had to check in, drop my bags in the room, get my port accessed and blood drawn by 11:30am. Needless to say, I didn’t make it by then. My oncology appointment was at 1:30pm so I knew if I got everything done by 12:30pm it would be all right.

They need time to test my blood before I see my oncologist. The blood test tells them a lot of things including if I can have chemo that week. Since chemo kills pretty much every fast growing cell including white and red blood cells. If my blood work is to bad they will have to hold chemo for that week. This time my white blood cells (WBC) were really low, so after chemo I will need a shot of a drug that tells my bone marrow to make more.

1:30pm
Appointment with Dr Jag (my oncologist). I found out that things are going really well. To explain, I have to go back a bit.

Tumor Markers
When I was first diagnosed with cancer my tumor markers were in the high 300’s then over the next couple of months they went to almost 900. After I started chemo at Vanderbilt they went down to around 500. Since tumor markers can not be compared from one lab to another (I don’t know why) I will start with my first visit at CTCA. On my first visit my tumor markers were 537. This visit they were down to 297 which is great. I will be reporting my CEA (aka. Tumor Markers) each time I post a new blog entry.

I went to Infusion and got hooked up to my chemo around 8:30. I fell asleep, like I normally do. Some of the pre-medicines they give me, make me a bit loopy and sleepy. So that’s not unusual. I woke up rather abruptly, was tingling all over and was having a really hard time breathing. So I hit the call button and my nurse came over. I told him what was going on and they gave me some medicine which helped out after a little while. They think I am developing an allergy to one of my chemo drugs. I got pretty sick after the reaction, but things were better the next day.

Thanks for reading. And as always, Thank you so much for your prayers and support, you will never know how much it means to us.

If you have any questions, comments or concerns please e-mail me at cancer@newvaliant.com

Decisions

mike@newvaliant.com — 2010-12-05T01:01:01-06:00

Decision to go to Cancer Treatment Centers of America

I must say this wasn’t easy. After getting the call from my oncologist at Vanderbilt, I really didn’t know what to do. After careful consideration, I decided to refute his prognosis. I still didn’t know where I was going to go. Bobbie and I talked about Johns Hopkins and several other large and famous hospitals. Then I was on FaceBook one day and one of the ads on the side of the page caught my eye. It simply said, “I was diagnosed with stage IV colon cancer. Read my story”. My first thought was, “How does FaceBook know I have Stage IV colon cancer?” I don’t think I’ve ever clicked on a FaceBook ad before. For some reason I clicked on it. It took me to a page where I spent the next several hours reading and watching videos about Eddie Dwyer. He is being treated at Cancer Treatment Centers of America (CTCA) in Philly. I remembered seeing the corny commercials for CTCA on TV but I never thought I would pick up the phone and call them.

When I called I talked to a very nice man named Harold Easton. He is a 12 year survivor of colon cancer. Since I had not spoken to a cancer patient before, this was a good opportunity. We spent about 3 hours on the phone. Harold recommended that I go to the Tulsa, OK facility. I went though the “intake” process, filled out a lot of paperwork and was on a plane about four days later.

First, for the people that know me, know that I’m pretty skeptical of anything that comes my way. CTCA was no different.

I arrived at CTCA in Tulsa on December 5. From the moment I was picked up at the airport I felt like something special was about to happen. I spent the next 8 days being tested, from blood work to a PET scan (which I had never had before). On the 5th day I had a return visit with my oncologist, Dr Jag. He brought my PET Scan up on the computer and it was amazing. There I was in 3D rotating around on the screen. It was like something out of one of those crime-dramas, that you know isn’t real. But this was real. All of my cancer was lit up. Vanderbilt was right about one thing. There are too many tumors to count on my liver. Plus there were several other places lit up outside my liver. Dr Jag said he wasn’t going to worry about them right now. Mainly because the treatment would be the same.

He gave me a copy of the treatment plan he drew up and while I’m not a candidate for some of the more “aggressive” treatments right now, he said that I may be soon. That is if I need them.

Dr Jag
Side note: I know it’s not really on the side, but bear with me. Dr Jag and I hit it off right away. And I don’t mean on a doctor-patient level. We actually connected in many ways. The biggest is that we are both geeks. He however is a bit more of a geek than I. I conceded the contest when he pulled out his iPhone and showed me an app that he had written. I’m so glad I found him. I believe in him as a doctor as well. More on all of this in another post.

I accepted their treatment plan, which includes treating the whole person, not just the cancer. I returned home sounding like a CTCA commercial. At the time I had only seen one or two and didn’t really pay attention to them. I brought back several things. First, they gave me hope. Second, Dr. Jag said something that stuck with me. He said, “I want you to understand, I can’t cure you. We can however, treat this just like any other incurable disease, such as TB, hepatitis, HIV etc.” Man! When he took cancer off the “top shelf” and put it down the the other diseases it really made me feel a lot better. It was like cancer was no longer a “top shelf”, gonna kill ya in a little while, disease.

Treatment Plan
LIke I said earlier they treat the whole person. My treatment plan includes Oncology, Naturopathic, Nutrition, Mind-Body and Physical Therapy.

They way you are treated there is wonderful. You never wait more than 10 minutes to see anyone. It seems like you have all the time you need with your doctors. You never feel rushed. I also love the way you are seen there as well. Once you check in, you go to the waiting room where they have TVs, drinks, snacks etc. In just a minute you are called back into a treatment room. Then, from that point on, all of your doctors come to you. For example, on my last visit, My nutritionist came in first, then Dr Jag (my oncologist). After that my naturopath doctor came in, then one of my care managers. I have the best care managers ever. You care manager is who you talk to anytime you have a question, problem or whatever. Unlike a doctor’s office where you have to leave a voicemail and someone calls you back in a day or so. I always get to speak directly to my nurse care managers when I call. They always have time for me and help with everything.

I think the number one question everyone asks there is. “What can we do to make it better for you?” That means a lot when you are dealing not only with your cancer, but family, bills and everything else we all take for granted every day.

Thanks for reading my blog. If you have question or comments please e-mail me. I’ll be glad to talk with you any time.

Out of Energy

mike@newvaliant.com — 2010-10-04T21:00:00-05:00

Really out of energy today. I was going to get out of bed and do some things, but I didn’t. Bobbie went back to work today. I’ve just been sitting here since she left, writing on this. Still laying around on the bed. I can’t even make myself get up. It’s like someone pulled the plug.

Justin took a big test today that they studied all weekend for. I ask how he thought he did. He said he missed getting an A by one point. I’m so proud of him. He is doing so well in school. I’m glad he will have a great life with good money.

Since this was the last entry in my personal journal, I’m going to jump ahead quite a while in my next entry. I know I was feeling really bad after each cycle of chemo but I didn’t realize I had stopped writing. Each time I had chemo it was a little worse and I spent more time in the bed. By the fourth cycle I was getting up just in time for the next cycle to start.

I covered this in the “Why” post so I’ll just hit the highlights here. The week before Thanksgiving I had a full body CT. When I went in for the results my oncologist stopped my chemo to prepare me for surgery. Then the day before Thanksgiving he called and said I couldn’t have surgery and never would. I flet like Vanderbilt pretty much wrote me off at that moment.

After Thanksgiving I called Cancer Treatment Centers of America (CTCA). More on that later.

I would like to hear your comments or questions so please e-mail me at cancer@newvaliant.com

Just a Good Day

mike@newvaliant.com — 2010-10-02T13:01:01-05:00

Just a Good Day

Since being diagnosed with cancer back in August everything in our life has revolved around doctors appointments, learning more about the disease and the overwhelming amount of information being thrown at us.

This was a good day. More like it was before cancer. I don’t think we even talked about cancer the whole day. Which would be the first time since July. We went to “Waldron Farm”, which is a pumpkin patch. I wanted to take some photos of pumpkins and just Halloween/Fall stuff for a while. I guess I woke up with ORANGE on the brain. (lol). It was Bobbie’s idea to go out there and a great one at that. I got some good photos of pumpkins and other stuff. Nothing award winning, just some nice memories.

It’s hard to believe life was like this before. I guess I didn’t appreciate it enough then. When you are faced with your own demise it really makes you cherish every moment.

Nothing Important - Just Rambling

mike@newvaliant.com — 2010-09-30T13:00:00-05:00

Nothing really happened today. I just wanted to log a couple of thing.

First, after almost a week of being nauseated, it’s getting better. They gave me a prescription for an anti-nausea medication (Zofran). After Kroger told us they didn’t have it, we dropped it off at Publix. They only had 20 of them and said they would have the rest for me on Monday. I saw the price which was $99. That was pretty high, but the script was for 120 pills, so I didn’t complain. When we picked up the remaining balance (100) pills on Monday the price said $500. So the whole prescription, 120 pills, was $600!!! MAN! That’s like eating a five-dollar bill every time I take one. I know there are much more expensive medications out on the market, but this was just for nausea.

I’m still playing catch-up on this blog but I wanted to let you know I have one coming up called “The Price of Cancer”, or “The Price of LIfe”. I don’t know which title I’ll use yet. Just know it will be enough information to get regular cancer screenings and keep yourself out of the “poor house”.

I want to hear from you, so please e-mail your questions or comments to cancer@newvaliant.com

End of First Round of Chemo

mike@newvaliant.com — 2010-09-26T02:19:24-05:00

Today ends my 46-hour chemo infusion at home. I figured up the time and it was going to end around 12:00pm. Actually 12:05pm to be exact, but who’s exact these days. Bobbie and I were debating on whether we were going to church or not this morning. Church starts at 10:15am and ends at 12:00pm. We decided to get there at 11:00 then leave a little early. That way we could be home before the chemo ended at 12:05. While we were having that conversation or right after, the alarm started going off on the pump. I opened up the bag and read what it said. “UPPER OCCULITION”. I opened up the part of the where the bag of chemo is, and it was empty. I silenced the alarm and called (the place that manages home chemo). The person that called me back said, “It shouldn’t have ended early, but it sounds like the bag is empty.” She said to go ahead and take it out. She was going to talk to the pharmacy to see what the problem may be. She said the nurse that showed us the pump might have primed it again or something. That would have made it run out early. We shut down the chemo and got the needle out. It took a while but we did it. The best part is that it really didn’t hurt. After that we decided not to go to church. My chemo nurse, Debra, said to use Glad Press ‘n Seal to keep the water off my incision. I really didn’t think it would work, but we got some anyway. I was surprised to see that it stuck to skin so well. Man that was a good idea. So, I Press n’ Sealed my chest, secured the edges with tape and took a shower. When I got out I was a bit surprised to find out it was dry on the inside.

First Round of Chemo

mike@newvaliant.com — 2010-09-24T02:14:09-05:00

Well, my appointment is at 8:20am to have blood drawn. I got checked in then called back for the blood work. A little girl that didn’t seem to know what she was doing drew my blood. It took her 4 or 5 times to get the tourniquet on my arm. She kept getting it stuck in her gloves and pulling it off. She changed gloves and tried again successfully. Then she stuck me, and missed. So she let go of everything and was going to let the blood tube dangle from the needle in my arm until I held on to it. After tearing the index finger out of her glove, (as if that what caused her to miss) she took the needle and dug around in my arm until getting a return. It was very positional, where she had only nicked the vein. Anyway, I didn’t tell her that I had a port because I didn’t want some catastrophe happening with it.

I told Sarah about Dr. Parikh but I don’t think it really set in. She acted pretty casual about it. The person that came into the room with her, tried to make the excuse that emergencies come up, bla, bla,. Which I refuted with it being a scheduled surgery and I was told he had a conference then had to see a patient. The bottom line is, Sarah said patients change surgeons all the time. I ask her to speak to Dr. Berlin about it and let me know what he says.

Now to the actual chemo. I went up stairs to the pod, as they call it. It was a pretty nice place. I was called back after a fairly short wait and put into a room. Debra, my chemo nurse came in. She was pretty awesome. I think I’ll ask for her next time as well. She explained a lot about the procedure. Then we had to watch a video. It wasn’t anything new. All of the information was what we had already read in the books and online, so it was pretty boring. She placed the needle in my port, which hurt a little. I figure it was because I just had it installed on Monday. She hooked up my IV and gave me something for nausea. That ran for a few minutes then Debra came back in the room with my chemo that was just mixed in the oncology pharmacy. Debra left the room and Bobbie and I fell asleep for an hour or so. Then another person came in and taught us how to do a lot with the pump, how to remove the needle after 46 hours. What to do in case of a chemo spill etc etc. All of the information about that is in the book. My infusion was complete and we left. All in all it took about 6 hours for this visit. They said it would take about the same for each visit after this one as well.

I don’t really feel any side effects from the chemo yet. Maybe a little cold sensitivity, but I’m not sure. It may just be in my head. My feet are definitely more sensitive to the cold. I was in the bathroom the other day and accidently stepped on the air conditioner vent. MAN! That was cold and seemed to burn.

Tired

mike@newvaliant.com — 2010-09-23T02:13:07-05:00

Since having surgery to put in the port I have been SO tired. Actually I’ve been in the bed most of the time. Sleeping on and off throughout the day and all night. My appetite is nearly gone (which isn’t a bad thing). The thought of most food makes me nauseated. This isn’t suppose to be happening right now.
I start chemo tomorrow and don’t know how it’s going to affect me. I’ve got a bad feeling that I’m going to be nauseated and probably vomiting. With any luck, it won’t be really bad.

Surgery to Implant Port

mike@newvaliant.com — 2010-09-20T02:07:39-05:00

I was to be at the hospital at 10:00am and that my surgery would be at 12:00pm. We got there at 9:50am I was prepared and ready for surgery by 11:00am. Around 11:50am someone came in and told us the operating room was being cleaned and Dr. Parikh had been called. They said, we would be ready to take you back at 12:45. Around 1:00pm someone came in and said we will be going around 1:30pm Then around 1:30pm a doctor (Dr. Liu?), came into the room and said that he was Dr. Parikh’s partner and Dr. Parikh was in a conference then he had to see a patient. The doctor said he could do my surgery, if I wanted. If I didn’t, then I would have to go home. Since I am starting chemo on Friday, I opted to let this doctor perform the surgery. I think we got started around 2:00pm or so. I’m not really sure. At this point I’m going to talk to Sara about getting rid of Dr. Parikh and getting another surgeon to do my liver surgery. I will find out more on Friday when I go for my first chemo.

I assume everything went ok. I woke up with a port and a sore throat. They said I was not intubated but my throat was pretty sore. I also didn’t know the port went straight into my heart. There are a lot of possible complications. I guess I didn’t know how serious this was. Maybe I would have been a little more concerned about the surgery had I known.

2nd Post-Op Visit with Surgeon

mike@newvaliant.com — 2010-09-17T02:05:47-05:00

Post-op appointment to see how I’m healing. Well this was a screwed up appointment to say the least. A med student came in the room first. He asked if I remembered him from my hospital stay. I vaguely remember him. He said that since he is just a med student they made him stand in the back. He asked me a few questions about how I was feeling etc. Then he asked if he could take a look at my surgery site. I got up on the table and he looked for a minute. Dr. Parikh came into the room. Hands in pockets. I noticed that every time he has come in the room, his hands are in his pockets. He rarely, if ever takes them out. At fist I thought that maybe he just has cold hands. I don’t know what it is. Anyway, he asked how I was feeling. I said I was doing well, and then raised my gown to show him the incision. I don’t think he even looked at it. He stayed across the room from the exam table. I felt kind of weird about lifting the gown. Kin to the embarrassment a small child would feel, by lifting a shirt in anticipation of someone “getting their belly” then nothing happening. Dr. Parikh then said, looks like we need to put in a port. To which I replied, “Yes”. I don’t know if he and Dr. Berlin had words, or if Dr. Parikh had to admit that he forgot to put the port in while I was in surgery the first time or what. I didn’t want to stir up anything, especially since this man was going to be operating on me… again. Dr. Parikh left the room and his nurse came in. I can’t think of her name, but she is a wonderful person. The surgery is scheduled for Monday, September 20, 2010

Return Visit to Oncologist

mike@newvaliant.com — 2010-09-15T01:57:58-05:00

I guess today we will see when I start chemo. Well, this was an interesting day. Dr. Berlin is an amazing doctor. Well, I’m not sure about the “amazing doctor” part just yet, but he does seem like a good man. He’s caring and seems concerned. He has a great “bedside manner”. Dr. Berlin sort of confirmed what I had researched on the Internet about my prognosis. In researching my cancer, I found out that statistically patients live anywhere from 11 to 30 months. This all depends on how well the chemo works and if they can do surgery to remove the tumors from my liver. Dr. Berlin said, they were only statistics and every case is different. I found out the names of the chemo drugs they will be using on me. They are putting me on Folfox-6 with Avastin but they are going to withhold the Avastin until I heal. It’s four different drugs, I don’t know how that compares with the “normal”, if there is such a thing. The chemo will begin on Friday, September 24, 2010.

Dr. Berlin noticed that I didn’t have a port. He said that it should have been implanted during my colon resection. He was going to talk to Dr. Parikh and find out why it was not. He said that maybe I was under anesthesia too long or something. I figure that Dr. Parikh dropped the ball and forgot. More on that later. The appointment went well. Dr. Berlin answered all of my questions, and gave me all of the info on my chemo drugs. Lots of side effects.

The Drainage Continues

mike@newvaliant.com — 2010-09-04T01:56:32-05:00

At this point I’m thinking they should have packed my incision. It was pretty bad tonight and the Steri-Strips are coming off where it’s leaking really bad above my navel. I took a shower tonight just trying to clean up some of the mess. I’m a little worried about infection setting in because there’s really nowhere for the leakage to go. It all seems to be trapped in by the Steri-Strips. I also discovered my incision opened up more at the bottom as well.

Post-Op Appointment with Surgeon

mike@newvaliant.com — 2010-09-03T01:40:50-05:00

Since I got out of the hospital my incision opened up right above my navel. I ended up being a “work in”, I think because Dr, Parikh’s nurse practitioner didn’t set up my appointment. One of the doctors (an intern) from the hospital came in first. I told him about the drainage. He poked around on me for a couple of minutes then said doctor Parikh would be in, in a minute.

Dr. Parikh came in and said, “I think we can go ahead and get these staples out now.” He left the room and the nurse came in and took the staples out. Dr. Parikh came back in the room and looked at my incision for a second. They were going to “open it up” and pack it, but for some reason they decided not to. Doctor Parikh left the room and the nurse came back in. She put Steri-Strips all the way down my incision then gave me an ABD pad to tape on it to contain any leakage. By the time we got home the pad was pretty wet and nasty so I changed it. Sitting up makes it leak more, so I’ve tried to lay back more than normal. The biggest problem with this is that it makes my back hurt more.

My Brother Died Today

mike@newvaliant.com — 2010-09-02T01:09:43-05:00

I know this is a cancer blog, but I had to write about this.

Richard Turner (49), my brother, died today at 4:35pm. I just don’t even know what to think of this. I’m just numb and so sad. They said he had Interstitial Pneumonitis. I have never heard of it before. He was in the hospital for about a month and a half and was on a respirator for a lot of that time. He became worse (and put on the respirator) after having a lung biopsy. I just can’t believe it.

When I was first getting diagnosed Richard and I spoke on the phone quite a bit. No one could believe that I had cancer. No one in my family had ever had cancer. It just wasn’t something in our family. He was constantly coughing and hacking. Since he was a smoker. I would tell him that he needed to quit smoking which would lead to him saying something like “Shut up”. Then the conversation would continue on to whatever it was we were talking about before. His coughing had gone on for about a year and he had only gotten a chest x-ray about 6 months ago. They said he has pneumonia, so he took some medicine and went on. One night when I was talking to him I pled with him to go get himself checked out. He talked about not having insurance and couldn’t afford to go to the doctor and have a bunch of testing adding up to thousands of dollars. I told him that he really couldn’t afford not too.

He finely gave in and went to the emergency room one day after not being able to breath. They ran some test told him he had pneumonia and admitted him to the hospital. I talked to him almost every day and sometimes several times a day. One night he said something about wanting some KrispyKreme™ doughnuts. I don’t even know if they have KrispyKreme™ in Alabama. I wanted to see him before I went in for surgery so, we went down on August 14. I stopped while we were here and picked up a dozen doughnuts for him. I didn’t think much of it at the time, but now, I’m so glad I did. I don’t think I would have ever forgiven myself if I hadn’t.

Surgery Day

mike@newvaliant.com — 2010-08-19T01:00:00-05:00

Left colon resection – surgery --------- It ain’t gonna be fun.

I’m continuing to write this entry on August 28, 2010 I got out of the hospital yesterday afternoon. There were a couple of “complications/set-backs” (I will finish this a little later). August 30, 2010 – I’m continuing this entry now. The incision ended up being a lot bigger than they initially said. It’s about 20 inches long. I was told that I came out of recovery around 11:00pm. A nurse came onto my room at 2:00am, woke me up and said I HAD to get out of bed and walk. Bobbie (my wife), said it’s a little early for that, he needs to rest. She then told her that if I didn’t get up right then she was going to call the doctor and tell them I was non-compliant. Had I not been so drugged I would have called the doctor myself. Instead, I was gotten out of the bed which split the bottom of my incision open and ripped out a couple of staples. I was going to call patient affairs and complain, but time got away from me

Two days after surgery, my abdomen became distended and I had to have a NG tube inserted. Over the next day and a half they removed about eight liters of fluid from my stomach. It took three attempts to insert the NG tube and I threw up about 2 liters of bile during this time. Linda Blair didn’t have anything on me and I didn’t need the pea soup. My blood work continued to be abnormal. It was WBC, RBC and hematocrit. I ended up spending 8 days in the hospital. Not the most fun I’ve ever had.

Pre-Op Appointment

mike@newvaliant.com — 2010-08-17T01:04:17-05:00

Not much to write this time. Please forgive me, I’ve never written a blog before, so I’m just writing all of the things that happen directly related to my cancer.

Pre-OP appointment at Vanderbilt. I arrived about an hour early. Standard blood work, chest x-ray, EKG, etc. I still don’t know what time my surgery is scheduled for. I should call today to find out.

Appoinment with Surgeon

mike@newvaliant.com — 2010-08-13T01:02:54-05:00

Appointment with Dr Alexander Parikh – Vanderbilt. Oncology Surgeon. Dr Parikh comes into the room and says, “the first thing we need to do is get the tumor out”. He continues along the same path as Dr Berlin so I won’t repeat it here. Too much typing. He states that if this tumor grows much more and closes off the colon then we will have an emergent situation. So it needs to come out as soon as possible. Surgery is scheduled for Thursday, August 19 (I don’t know what time yet).

First Appointment with Oncologist

mike@newvaliant.com — 2010-08-12T00:00:00-05:00

I had my first appointment with Dr Jordan Berlin (oncologist) today.

Since my hypertension doctor is at Vanderbilt, I have walked passed by the Vanderbilt-Ingram Cancer Center (VICC) many times in the past not really thinking about what goes on beyond the walls. My thoughts would stop only to think of the people waiting to be seen, and to say a silent prayer for them. On August 12, 2010, a few days after my initial cancer diagnosis, I would be one of the people in that very room, waiting to be seen by a doctor. This was my first oncology appointment. I think the reality of my cancer diagnosis began to “set in” for the first time when I walked in the door. It was big and quite over whelming.

This visit would qualify for a total information overload. Wow, there’s so much to learn and so much crap to buy. Who would have thought about things like, you cannot shave with a razor anymore, you have to use a “extra soft” toothbrush, no flossing, satin pillowcase…. Come on! You can’t be around groups of people because of germs. It just keeps on going.

Back to the visit now – Dr Berlin states that we need to get the tumor out of my colon first. Three weeks after surgery he wants to start 4 sessions of chemo (each session being about 2 weeks) to shrink my liver and the tumors. If the tumors and liver shrink then I will go back into surgery to have the tumors removed. Then he wants to do another 4 sessions of chemo. Anything could change this plan at any time. They hope that I will be in remission in 6 – 8 months.

They also asked permission to bring my case up to a board that studies “special” and “complicated” cases. I gave permission and ask what was so special about my case. It seems that one of the tumors is in between the two lobes of my liver. This makes it extremely difficult to treat or get to. There was something else also, but I don’t remember what it was now. This was a very long appointment. Dr. Berlin was in the room for over an hour. He wanted to have a surgeon in with us, but they were all in surgery today. They made an appointment for me to come back on August 13 to see Dr Alexander Parikh

Colonoscopy & Endoscopy

mike@newvaliant.com — 2010-08-04T15:36:11-05:00

Hmmm, what a title. I was going to name it Shutes and Ladders but that one was already taken. :-) We I had my colonoscopy and endoscopy performed today. I must say it was not as bad as I first thought it was going to be. Actually I don’t remember much of anything that happened that day.

The following is what my wife told me:
After the procedure, I got dressed and went to a room. The doctor came in shortly afterwards. He said they found a tumor in my upper colon that measured about 55cm. He said that I needed to go to an oncologist and a surgeon. Since I was already going to Vanderbilt for my hypertension I decided to go there for my cancer treatment. I was going to leave out the names of places I went and the doctors I have seen, but have since decided to include them.

Just so you know. If you are in need of a gastroenterologist and a great one at that. My doctor’s name is Dr. Donald Lazas at Summit hospital. You can do a google search to find out the rest of his information. If it were not for this man, I may not be here today.

I already had an appointment set up at Vanderbilt on August 12, 2010.

I want to add another side note here: Since I didn’t know anything about cancer, or oncology or where to go for treatment. My wife called my hypertension doctor at Vanderbilt. He is an outstanding doctor that has been treating my very complicated case for 10 years. If you need a great hypertension doctor his name is Dr. James Gainer III at Vanderbilt. Robert, which is Dr Gainer’s nurse dropped everything he was doing when he found out about me and called the oncology department. They told him the earliest they could get me in was August 26 or so. He said NO that won’t do and made them get me in earlier. He was very aggressive in getting me in to see the best oncologist Vanderbilt had to offer. I can’t thank him enough for that. It wasn’t something he HAD to do it. But he did. Thank you Robert!

First Visit to Gastroenterologist

mike@newvaliant.com — 2010-07-14T15:20:54-05:00

On my first appointment, I met with the doctor. He is a very knowledgeable man without much of a sense of humor. Very “down to business” oriented. I like him. He examined me and they drew some blood to sent to the lab. He also wants me to have a biopsy of my liver. So they was set up for the 20th.

On the way home my wife and I were talking and I mentioned the fact that he’s a gastro. I said before I get finished seeing him, he’s going to want to stick something up my butt. We had a laugh about it. I said I was going to get a tattoo that read “Exit ONLY” on my rear. I think I even mention to her how I didn’t want to go through any of this.

Return to Gastroenterologist Biopsy Results

mike@newvaliant.com — 2010-07-28T14:48:35-05:00

I went back to the gastroenterologist today for the results of my liver biopsy. The doctor came into the room, shut the door and said you have cancer. I don’t know where but we are going to find it. This pretty much floored both me and my wife. I was thinking, this just didn’t happen. It’s not like it was in the movies. He didn’t call me into his big fancy office to tell me. He hadn’t even sat down yet. I don’t know why all of that was going through my head, but it was. All of this came because of my blood work, not the liver biopsy. It seems that my tumor markers (CEA) were almost 300. “Normal” range for this is 0 - 7. The biopsy came back normal. He explained that they could have just missed the cancer. He said they could have been going into a suspicious place and part of it could have been cancer and the other part normal and they just hit the normal part.

On a side note: I feel like I owe a lot of my life to this wonderful and diligent doctor. If he had just looked at the biopsy and nothing else, he could have sent me on my way. This story would be going in a totally different way had that happened.

The next words out of his mouth were, “Have you ever had a colonoscopy?” I looked at my wife and both of us busted out laughing. He looked at us like we were crazy. I told him it was something we were talking about on the way and left it at that.

He said he wanted to do a colonoscopy and endoscopy on me at the same time. I thought he was kidding, but he wasn’t. So that appointment was set up for that on August 4th, 2010

Liver Biopsy

mike@newvaliant.com — 2010-07-20T08:00:00-05:00

Today I had the biopsy of my liver. It wasn’t the best experience in the world. Plus it started another “episode”. No one can seem to tell me what these “episodes” are or what’s causing them. Actually when I bring up the fact that I can’t breath, and the pain associated with it everyone just sort of looks at me stupid.

The procedure for the biopsy was pretty complex. They took me into the CT room and got me over to the CT table. They started an IV, put me on oxygen and gave me some medication to make me not care about what was going on. Then they put a “map” or grid on my abdomen and did a short CT scan. They readjusted the “map” or grid and did it again. When I came out this time. They stuck a needle into my abdomen and took a sample of my liver. They ended up doing this 4 times. I guess to get 4 samples from different areas.

I don’t know any results yet.

Call from GP

mike@newvaliant.com — 2010-07-12T10:00:00-05:00

I got a call from my GP this morning. He got the results of my CT this morning and they found 5 lesions on my liver. He said that he wanted to refer me to a gastroenterologist.

We still don’t know what’s going on, but it’s not looking really good at this point. I’m not sure what to think about everything.

CT of Liver

mike@newvaliant.com — 2010-07-08T14:00:00-05:00

Today I had a CT of my liver. There was nothing to it. They put me into a machine that looked like a big white doughnut. It made a lot of noise then they started an IV on me and injected some “contrast” into my vein. It game me a warm sensation all over, but it didn’t hurt or anything.

They said I will know the results in about a week.

Ulrasound of Liver

mike@newvaliant.com — 2010-07-06T13:30:00-05:00

I went for my ultrasound today. While I was getting it done, another person walked into the room. The person doing my ultrasound said she just came in to “bug” her. I don’t know why I didn’t catch on to something then. People just don’t walk into a room while a procedure is going on “just to talk”. After thinking about it, it makes me feel like an idiot for not catching on earlier. Actually, I didn’t catch on to anything until I told my wife about it. She is the one that said, “they found something, they just don’t have people to come into the room for no reason.”

Of course I denied that anything was wrong. I told her she was just overreacting. Then my phone rings. It’s my doctor...

He says, “Hey Mike, I just got a call from the radiologist and they found 3 lesions on your liver. I think we need to go ahead and get a CT of your liver to find out what these things are.” I agreed so a CT was set up for July 8th, 2010.

First Visit to my GP

mike@newvaliant.com — 2010-07-05T11:00:00-05:00

I had 4 “episodes” of right upper quadrant (abdomen) pain along with referred pain in my right shoulder. With this came being extremely short of breath. It all seemed like a gallbladder attack. I knew this couldn’t be, because my gallbladder ruptured and was removed 11 years ago. So I went to my primary care physician on July 5th, 2010.

I told him what was going on and requested that he do some testing to find out what was cause this. He agreed to do the testing I wanted. So I got some blood drawn, a chest x-ray and was scheduled for a ultrasound of my liver tomorrow (July 6, 2010)

We don’t know anything as of now. Just that something is not right.