Llama Farming with Colon Cancer

Unfortunately A New Beginning

Thu, 03 Jul 2008 23:46:44 -0800

In a couple of weeks I'll see the 3rd anniversary of my cancer surgery. I should be real happy to be alive and functional, but that takes a back seat to starting a new round of chemotherapy. In a way, I'm no better off than I was 3 years ago. This new "recipe" has a new drug that I don't know the name of yet, and a variation of the 46 hour drug that makes me carry the infusion pump in that "damn" bag. Since I really was lucky last time when my body got used to the drugs, I am looking at the down side and figure this time I'm going to have problems, get sick, lose my hair and all the other bad things. The doctor was very friendly Wed., but brief for all that is going to happen. I did ask for another 2 weeks before starting which he agreed to with no hesitation. I need to gain some more weight. The appetite stimulant is working and I could eat all day, but I've only gained 6 lbs. I need to gain at least 4 more in the next 2 weeks. I can continue taking that even when the chemo starts, so hopefully that lack of appetite the drugs cause will be counteracted. I think if I can keep my weight up the drug effect will be lessened. I still get tired so easy. I have so much to get down outside and I get pooped real fast. It makes me mad and discouraged. Unfortunately, I get little help from anyone. I guess that's about all I can say right now. The chemo begins on July 22nd. Wish me luck and good health to all of you.

Latest Cat Scan

Thu, 12 Jun 2008 20:47:43 -0800

Being a writer of sorts, it's strange that I'm having difficulty on how to write this. So, excuse me if I ramble a bit. Yesterday was the doctors visit and it got off to a bad start when I lost another pound. Then when the doctor came into the exam room, his body language was not good and he passed the stool he sits on and sat on a chair in the corner. I asked good or bad news and the answer was bad, but not real bad. The facts. Two months of the drugs and they basicaly did no good. The liver was ok, with a 1 mm shrink, but a new nodule was in the lungs and one other nodule in the lungs had grown 1 mm. So, I'm done with that set of drugs. I thought they were working as I had all the side effects as before. At least we held our own in most cases so I can't disagree with the decision to try these drugs again. To explain things and maybe to make me feel a little better, the doctor said that I was in no danger at this point as the liver is a rather large mass and my biggest nodule is like a thumbprint on it. He said I was safe for at least 12 weeks, although the lungs are starting to be a problem. The good news of this, maybe, is he gave me 3 weeks off to build my body back up. He is going to consult with the other oncology doctors to plan a new treatment program and one that would be sure to cover the lungs, as well as the liver. This was one of the best visits with the doctor I've had. He seemed really concerned about me and more than willing to sit there and answer any questions I had. I was tempted to ask the question about how long I would have a liveable life if I quit, but passed it up. I was getting along with these drugs so good, I'm afraid I won't be that lucky next time. I did get my prescription for the appetite stimulent and have taken 2 doses and have had no increase in appetite yet. It says it may take 2 weeks. Another $250 drug, but of course Humana gave me a generic for $4. Mentally, I have mixed feelings. I'm going to enjoy the time off again, but the new drugs do worry me. I know this is a long term thing as we've been through 3 years of this next month, but it can be depressing at times. I really get mad when I do the least bit of things outside and get pooped real fast. I don't know if I will ever recover the muscle mass that I have lost these past 3 months. I don't know what else to say at this point except to wish all of you good health, be happy with it, don't take it for granted and enjoy it.

Chemo Treatment #2

Fri, 09 May 2008 19:54:41 -0800

My second treatment went well as expected. I told the nurse I had good news and bad news. The good news, I feel fine. The bad news, I feel fine. Still a little concerned the drugs are working. I was surprised yesterday. I was cutting frozen green peppers and they "bit" me. A good sign the cold sensitive drug is working. I had handled ice cubes with no "bite" so maybe just not as bad as before. I'm having some bad constipation cramps and that seems to be a drug reaction/side effect this time. I guess it could be worse than that, but it's pretty uncomfortable to say the least. I had an unexpected problem with the pump. It started beeping before I even got out of the clinic. We silenced it and I stopped to check a couple of work questions at the hospital and it went off again and indicated air in line. I made some calls and found out how to stop and re-start. The bad is, it kept going off every 10 minutes or so after pumping 2ml. At home I fed the animals, planted my tomatoes and cut grass with it still beeping every 10 minutes. I thought wrong that it would clear itself. Now, at 9:30 I start making calls again. One nurse(?) tried to talk me through purging it but I was too dumb to do it. So, they sent a nurse out at 11:00 and in 3 minutes she had it working. I was trying to re-install the cartridge upside down. Dumb me. Chalk it up to an educational experience. If it happens again I know what to do now. Made my 46 hour pump last 48 hours. I'm pretty sure I will not get sick and if I can find a remedy for the constipation problem I should look forward to normal times. I also found out that part of the anti-nausea medicine is steroids. Interesting. Not helping my weight. I lost another 2 pounds. Guess that's an update for now. Good health to all of you.

Chemo Update

Wed, 30 Apr 2008 21:25:29 -0800

I promised an update after one week of resuming my chemotherapy. First, I should mention that I neglected to include Avastin in the drug "recipe". Since it had stopped working, I thought we would substitute something else, but they said it had something to do with my blood and had to be in the mix. I am happy to say that I have had no, almost, side effects so far. I did have 3 days of constipation, but I'm not sure if the drugs were the cause since it's opposite of what should have happened. Being a "worry wart" of sorts, now I have to wonder if the drugs are really working. For one, it seems the cold sensitive drug is not making me cold sensitive. I made what could have been a mistake when I reached in the freezer and grabbed the ice cube tray not thinking, but I had no sensation. I was eating ice cream by Thursday night. Is that meaningful? I got along pretty good with the 46 hour bag. It wasn't until 10 minutes before getting it disconnected that I forgot it was on the floor and I got up and walked away. The sudden jerk on your chest is a quick reminder. I feel really good and will start working weekends again this week. I'll have questions next week for treatment #2, but not sure I'll get any answers. I did take an anti-nausea pill Thursday and Friday nights just in case, but don't believe they were ever needed. They do work great on clearing sinus problems. That's it. Nice to write something positive and I hope that trend will continue. Until next time, good health to all of you and don't bet too much on the Kentucky Derby.

Chemotherapy Again

Wed, 23 Apr 2008 13:38:34 -0800

As the old Gene Autry song said, "I'm back in the saddle again", except my saddle is another round of chemo and with the same "recipe" of drugs, less the experimental drug. So we have oxaliplatin, the one that makes you cold sensitive; fluorouracil that has the 46 hour pump you have to carry with you; and promethazine for nausea, It will be interesting to see how I react to these the second time as far as getting sick and if they will be as effective as the first time. I am happy to say that after 24 hours I feel fine, but my first real test will be about Friday as the dose of anti-nausea IV wears off and I rely on pills. By then, I can drink my room temperature "ice" tea with ice. A couple of surprises, I did eat a normal supper last night and of all things as I think about getting sick I'm dealing with being constipated. Figure that out. I still try to remain positive about this, if that is possible, but with us starting this at a low dose that I could tolerate last time I can have some hope. I know I have to eat regularly and with it being summer this time, getting out of the house and getting some exercise. That's about all I can say right now and will give another report in a week to see how things all going. Until then, good health to everyone.

Another Cat Scan

Thu, 10 Apr 2008 00:52:26 -0800

We've been at this "adventure" now for some 33 months. I lost track of how many cat scans I've had, but this was either 13 or 14. I always get concerned when scan time comes. Think the worst and hope for the best. I was really worried with this scan. I haven't felt good for several weeks and lost weight which has held stable for now. I just had a bad feeling. Here's the story. Cindi, the NP, came in the room and asked if I had seen the scan. I said no and just answer one question, what was the measurement of the largest liver spot. She said 5.5x5.3. I'm very careful with my language, but my reaction was to say sh**. When we started this mess it was only 4.2 x 3.4. This spot has the diameter of a tennis ball!!!! Of course, when the doctor came in he was not smiling and said we need to start chemotherapy right away. Asked what, he again said we would try the same "recipe" of chemicals as before. Since I have been off of them for 2 1/2 years they should work again and after a scan in 2 or 3 months if they're not working he would try something else. I asked if I had to have the 5RU and carry the damn bag for 2 days. The answer was yes, you'll have the "damn" bag for 2 days. Don't think he liked my damn. I asked to start with a lower dose so I wouldn't get sick and he just smiled going out the door and said it was up to Cindi to keep me well. That's the bad news. We start in 2 weeks. I hate having to do this during the summer, so much that needs to be done. At least the cold sensitive drug shouldn't be problem, except my iced tea. I guess the death door has opened a bit further. Too bad my home support is zero. I wish you all continued good health.

Mind Games Again

Wed, 12 Mar 2008 13:07:51 -0800

It's been awhile since I have added to this diary because everything has been so routine with the treatments. Yesterday was another dose of Avastin with wonder of if it is really working. I was a little upset because I continue to lose weight, another 3 lbs. Not much but I am down 9 lbs. from my original weight gain, 3 lbs. from 2 weeks ago. I'm not feeling good , but not sure if it is physical or mental. And, my next cat scan is a few weeks away and that always has me thinking what will it be? I try to remain positive, and make these posts positive, but let me share a bit of creative writing that sums up my negative feelings.
THE HALLWAY
My life is like a long hallway and I'm trapped and cannot get out.
At one end of the hallway is a door with a sign, DEATH.
At the other end is a sign, FREEDOM.
I cannot open the freedom door.
Forces keep pulling me toward the death door, which is open a crack.
I fight back to the freedom door, but I cannot get out.
The forces continue to pull me and each time the death door opens further.
I know that someday the vacuum of the death door will pull me in.
I don't know when that will be.
I keep asking, why can't I open the freedom door?

After writing this I was surprised at how accurate that it describes my feelings. I wonder how many other cancer people feel the same way?
Wish me luck on the cat scan and I wish all of you good health.

Disappointing Doctor Visit

Thu, 10 Jan 2008 21:43:31 -0800

Once again, the doctor wanted to give his short analysis and split. Not when I had to sit almost an hour to see him. The visit got off to a bad start as I have lost 5 pounds tis past week. It disturbs me, but no one else. The main topic was the results of my latest Cat Scan. The doctor indicated there was some small growth on my main liver spot. Just a couple of mm and a couple of new very small nodules, an indication that the Avastin is not being as effective. Of course, one of the options is to start chemotherapy again. I declined, so we'll go anoter 3 months and scan again. He almost promised that chemo would be necessary before the end of 2008. When asked what, he said probably the same combination of drugs we used before, without the experimental drug. That doesn't make sense to me as we stopped because they had stopped being effective. Since we are not in any critical state, we will continue the Avastin. I wish I had been more confrontational, but that just makes him mad. I got what I wanted so maybe next time. The scan results showed something new. Degenerative changes in the thoracolumbar spine. Sounds like old age and maybe why I have so many back aches. Nothing else scanned have any changes. So, even though the doctor was negative, the results were mainly positive. I do have to remind myself that you cannot take anything for granted. Things can change rather quickly. I'm thinking of Barbara Carter, for all you family members. I wish good health to all of you.

Avastin #50

Tue, 18 Dec 2007 14:16:23 -0800

Treatment today and I was guessing this should be about 50 Avastin treatments and I was informed that I was exactly right. Sounds like some kind of landmark. One more treatment and it's Cat Scan time again. Everyone assumes that the drug is still working. I was told, with some relief on my part, that if and when the Avastin stops working there are a number of other anti-body drugs now that would keep me from a full blown chemotherapy go around. My blood work is great and as a side effect, the Avastin helps with other problems that anti-bodies help with. I finally got some sort of answer to why the cost has gone up so dramically and the answer is supply and demand. Sounds like the oil industry. Avastin is now approved and used for metastatic breast and lung cancer along with colon cancer. You'd think they would just make more, right?
I'd like to pass along a little story. An attorney in Louisville was broadsided by a city bus and had serious injuries, including brain damage. After months of rehab. he tried to go back to work and couldn't function. He was said to have been brilliant and with a future with no limit. Now he is confined to home and has to hire help to get him through the day. The point of this is to say that "things could be worse" for all of us. This is his quote at the end of the article. "Since the wreck, my life has become an unfinished painting sitting over discarded in a dark corner, stacked against the wall. And that is unacceptable to me. To me, a life without purpose is pointless." What more can you say.
I wish all reading this a Joyfull Holiday Season and hopefully one of good health.

My Latest Cat Scan

Sat, 20 Oct 2007 02:37:05 -0800

Thought for the day. It is said that there are two certain things in life, death and taxes. But, there is a third. You never see your doctor at the appointment time. At least the wait was good news. My CEA (tumor marker) score had dropped from 118 to 78, a good sign to start the news. As for the scan there were no changes, no liver growth, no growth of the spot on the colon suture, no change in the kidney stone or the abdominal aneurysm. There was a new item in the scan, which I could not ask the doctor since I can't have a copy of the scan results until after I see the doctor. It said, "small periumbilical hernia containing only fat." Whatever the heck that is. Something to ask in the future. Also, "There is no significant retroperitoneal lymphadenopathy." I think I need a medical dictionary. So now it's the same routine, three months of Avastin and another Cat Scan. I'm having a little problem with the insurance company. After paying claims for nine months they say I haven't been a member since December of 2006. Strange they would send a new card for 2007 and benefits book and pay the claims all this time. As I have said in the past how important insurance is, the bill for one month is $23,000. Humana is supposed to be correcting their mistake. Not sure I would refer anyone to them. Good health to all of you until next time. .

Drugs and Your Brain

Thu, 20 Sep 2007 15:29:12 -0800

Now that I'm back on my Avastin routine, treatment every two weeks, I really don't have much I can say. So, I'm going to talk about two questions I have been "pondering" lately. First, why am I having such vivid memories of past events? Second, could drugs, in my case Avastin, be affecting my brain cells? Some background to this. In promoting a National Geographic special the newspaper said this: "Our brain, for example, includes 100 billion cells, about as many as the stars in the Milky Way. What did you do with your neurons today?" It is my belief that the brain has stored everything that has ever happened to you, a computer hard drive of sorts. We all get the question occasionaly "do you remember when . . ." and most times we do. What is happening to me is it goes much further. Without being asked something, just a comment about something triggers a response in my brain that brings up an event related to the comment and in vivid detail although it may have happened 50 years ago. An example, we took a trip west some 8 or 9 years ago. I can take you step by step from the time we flew out of Louisville until we returned, naming some 50 events that happened. Even while typing this those events are racing through my mind without even trying to recall them. Things pop into my head for no reason and no prompting, just all of a sudden something that happened years ago is recalled. No, I'm really not crazy! As to my second question, this all seemed to begin when I went on just the Avastin program which really makes me wonder if the Avastin is the cause. Now, with just writing this about Avastin, my brain wants to start reviewing all my treatment program. Wierd!! I didn't bring this up to the doctor on my last visit as it is just since then that I wondered if Avastin could be the cause. No telling what he would say, probably after laughing at me. Yes, in a way it is funny. It is not something causing any problems and it certainly is interesting on what memories might surface and what memories are still hidden and won't surface. Maybe I should write the Avastin folks and see what they say. I do know that it is not going to go away and maybe is becoming more intense, again making me feel Avastin is the cause. I could go on with more examples, but I think I said enough for you to get my point across. It would really be interesting to me to get some responses about this "condition". In the meantime, what did you do with your neurons today? Good health to all of you.

No Chemo Yet

Thu, 06 Sep 2007 14:25:03 -0800

An Avastin Surprise

Wed, 15 Aug 2007 13:07:53 -0800

Yesterday was my "medical" day, treatment at the clinic and to the family doctor to remove a small cyst. Simple, what could go wrong? Well, you know something did or I wouldn't raise the question. As I was being "plugged up" I mentioned the cyst that is about 3 inches from my port and needing to get out of here close to 3:00 to have it removed and of course not looking forward to it. The response was "wait a minute, you need to talk to Cindi." It seems that Avastin slows the healing process and that "hole" that would be created could be a problem. Two years using Avastin and I just find out this kind of side effect. Wonderful. So, this was not an urgent thing and I had to cancel it. I did stop by the doctor's office and apologize and get the results from my blood tests. I was a little surprised that everything was fine. I'm not used to having something fine. By the way, the cost of my last Avastin increased some 150%. I couldn't believe $11,000???? for one dose. I keep thinking maybe they made a mistake, but probably not. Thank God for insurance. That's my update. Good health to all of you.

Back on Drug Treatment

Wed, 01 Aug 2007 02:55:29 -0800

I feel a little better writing this than my previous "depressed" message. Yesterday I began my drug treatment with Avastin only. Once again I was greeted by the friendly staff that had my coke and pretzels on the table with a bonus of chocolate chip cookies. I did quiz the NP on whether the doctor had read all the radiology report and was aware of the growth on the colon suture line. Yes, he was aware of it and one of the reasons he wanted the Avastin started right away. No doubt that another chemo stretch is down the line sooner that later most likely. The second part of the afternoon was with my family doctor and we had a long talk about things. My biggest concern with him was the coronary artery calcification. Hopefully, he is right in that he down played the problem as cat scans are not a good way to detect this type of problem. If I had no pains or shortness of breath I shouldn't be concerned with that. What a relief. I am going to go back and have some blood work done that hasn't been done in two years. He could detect a little depression on my part, but we both agreed no medication. If it does get worse he feels he could help with one or the other drugs. Lets hope it doesn't come to that. I told him I and others wondered why when the Avastin was working would you stop for four months. Did the doctor make a mistake. Of course he wouldn't answer that direct. I think he may be right that it could be part of the experimental drug program to see what would happen. It's water over the dam now. The clinic nurses do agree that the doctor is brilliant, but not good with long explanations of things. I can buy that. So, my crisis isn't a crisis, but I definitely have problems to be addressed. Like I said from day one, the drug treatment is a lifetime project. I hope my body doesn't have a problem with the Avastin being re-introduced. It didn't before so I feel "safe" this time. Initially no problems. I'll continue to hope for the best and I wish you all good health.

Bad Cat Scan

Fri, 27 Jul 2007 02:48:48 -0800

After a relatively quiet four months of no drugs, I anticiated this cat scan would most likely put me back on Avastin at least. I got a clue from the NP in her routine exam when she said my CEA tumor marker had jumped from 25 to over 100. The doctor was rather quick to point out that with continued growth we needed to start the Avastin again for 3 treatments over 6 weeks and by blood test know if we had stopped the growth. The big problem is my right liver lobe. We were at a measurement of 1.8 x 1.3 when se stopped the drugs. We went to 2.8 x 2.2 in May and this scan was 3.5 x 2.5. Not a real big deal but it does make me wonder why we went the four months. Can new chemotherapy be far ahead? Okay, this is pretty much what I expected. I got my usual copy of the radiology report and read it when I got home, and did I get a shock. The first thing I read was a nogule adjacent to the suture line on the colon that is suspicious of carcinoma with a size of 2.2 x 1.9. Gads!!! If that was not enough in reading further I came across a statement of coronary artery calcification and recomment clinical correlation for coronary artery disease. Double gads!!! Why didn't the doctor mention this? Needless to say, I made anappointment with my family doctor to discuss all this. I am both a little angry or upset, take your pick, and also really depressed at this point. I have my treatment start next Tuesday and will go from there to see my family doctor. I issue an update next week on prognosis or whatever. Cheery bit of news, right? Until next week, good health to all of you.