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

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.

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.

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.

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.

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

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.

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.

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.

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.