Justice

Bob here.

I cannot tell you exactly where Charlie is, but he can't be far away. :)

I thought that I would throw in my two cents worth. If he can make his blogs into a book, then maybe I can get in on the action also.

His blood test results were interesting. Some improvement in red blood cell count, platelets and hemoglobin, but the white blood cell count, while better than last week, was lower than he anticipated. He thinks that he may have to get more neupogen shots next week.

He had a little more protein and ketones in the urine, Hopefully this will improve.

He seems to have good energy so far and I am sure he is looking forward to my departure tomorrow. I hear his energy flags a little after I go. Do you think it is because he misses me? No, I don't think so either.

The interesting development this week is that the research manager started getting a cold and decided to try some of Charlie's Lypo-spheric Vitamin C. She thinks that it tastes awful. Little did she realize what Charlie deals with daily. Justice! She took five packets over two days it it cleared her cold symptoms right up.

Here is a list of his top (or bottom) five tastes that have to be dealt with each day:

1. Essiac Tea
2. Beet Root Juice
3. Lypo-spheric Vitamin C
4. Black Seed Oil
5. Pecta-Sol C

To modify a popular saying: Try it, you might not like it!

White Blood Cells

You might say that the last seven days have been interesting.

Last week, I mentioned that my white blood cells were low. What is more, with the chemo, they go even lower.

They obviously got very low by the weekend as I came down with a cold, the first in 30 months! My immune system was shot.

The research manager prescribed lots of vitamin C and, of course, Chaga Mushroom tea. That seemed to do the trick and I began to improve by yesterday.

When I had my blood test yesterday and the results confirmed my suspicions. The white blood cell count was disastrously low, well below the minimum acceptable level. As a result, I was given Neupogen by needle. The needle goes into your underarm with a sharp prick and seems to stay there forever as the precious liquid gets squirted in and starts to promote the development of white blood cells from you bones. I got a second shot today and the shots do wonders. I feel like a million bucks, well, at least $900,000.

By the way, Ariana Grande was in Tampa to do a concert yesterday and had to cancel it because she got sick. I'm just saying.

The research manager continues to try to keep tabs on me. When she felt that I was not taking all my pills properly, she taped a close up of an eagle's head above the pills, with its "eagle eyes" staring at me. I dealt with that by fashioning a blindfold out of paper and putting it over the bird's eyes.

She also read about the fact that it is not good to keep the TV on over night while you are sleeping. The blue light and flashes of light are particularly bad. I have been sleeping in a separate bedroom due to my cold and had the TV on last night. I woke up in the middle of the night to sleepily observe the the TV was not working properly. The picture on both sides of the TV was faint and there was a black strip down the middle. I went back to sleep quickly. When I got up this morning, I discovered that the research manager had crept in and covered the TV with two pillowcases. Where they overlapped, it caused the black stripe. I just had to laugh.

In any event, things are on the mend and I am feeling much better than I did a few days ago.

As always, thanks for your interest, concern and prayers.

Getting used to the routine

I feel like I am getting used to dealing with the chemo thing.

I am handling the pump (aka Bob) far better than I did previously.

My numbers were somewhat improved from last week, not where I want them to be, but the doctor seems comfortable. He has reduced the amount of 5FU that is in my pump so that there will be slightly less negative effect on my white blood cell count. I still live with Bob for 46 hours after treatment.

The chemo days begin with steroids. As I result, I feel good for the rest of Tuesday and all of Wednesday, but am a little bit worse the wear for Thursday and Friday. However, I have learned that keeping fairly busy keeps things in better balance.

I asked the nurse yesterday if we could change things up and have 5FU for 20 minutes at the beginning of treatment and then have 46 hours of steroids in the pump. She did not buy into that suggestion and did not bother to ask the doctor about it.

Every treatment day, I go into the treatment room and am asked if they can get anything for me. I always ask for Chinese food, but they always tell me that they don't have it this week. One of these days, maybe I can work it out.

All in all, things are going fairly well and life is good.

The book seems to be taking forever. I think we are looking at late July for the official launch.

I will keep you posted.

As always, thanks for your interest, prayers and support.

One week back in the routine

Here I am just over a week after my first "Maintenance" chemo treatment.

A few interesting (to me) things of note.

My pattern of energy is the same as the full chemo regime. Since steroids are part of the treatment, I have good energy Tuesday evening and all day Wednesday. In fact, I was able to go to a full day at a regional bridge tournament in Brandon.

Thursday and Friday are lower energy and appetite days and then things return to normal on the weekend.

The interesting thing is that while my blood numbers were decent and even good in most cases last week, they were really disappointing yesterday. I felt good. I had energy. And yet, my white blood cell count was very low. My platelet count dropped dramatically and yet I have not been developing bruises like I usually do with lower platelets. Further, my extracted tooth wound has healed nicely.

And so here I am, feeling good and raring to go.

I read an interesting article this week about the value of fitness as it relates to colon cancer. (Not having a fit, but actual fitness!) The article claimed that the more fit a person is, the less likely they are to get colon cancer and for those that get colon cancer, they have an 89% lower risk of dying from the disease. And that is why I play tennis virtually every day.

The research manager continues not only with her research, but also with her vigilance in keeping me on the straight and narrow. She told me this evening that I needed a good nutritious dinner. She was working at her computer and I walked into her office with a single small piece of broccoli on a plate. She exclaimed "Is that what you're having for dinner?" I couldn't help but breaking out laughing. I think she had realized that I was kidding her, but it was still fun.

Every week, it seems that publication of the book gets further away. It looks like late July will be the date that it will start to be distributed. I did get the cover design today and there are several changes to be made to it, but it is looking good. I get excited seeing it develop, albeit slowly.

A busy week

It has been a busy week and there seems to be much to report.

After another week without Xeloda, my hands are getting better.

My blood tests yesterday were all improved with the exception of my white blood cells, which were marginal. The nurse practitioner added another CEA test and it was better than the last one (5.2 vs 6.0).

I started the maintenance chemo yesterday and an surviving it fairly well. Without the Oxaloplatin, the side effects are unlikely to be as bad and the doctor gave me Mugard to preempt any mouth sores.

I also had a follow up visit with the dentist on Monday and the extractions are healing well. I am virtually back to normal and will now have to discuss with the dentist what to do next.

I felt so good today that the research manager and Bob and I went off to play for one day in a regional bridge tournament. We did not badly. It was a good way to spend the day since I was not able to play tennis Bob has not learned how to play tennis yet.

The other day, we were talking about people that learn how to play the piano when they are young and then pick it up later in life. It is amazing that they can gain that much strength. Pianos are heavy!

The other day, the research manager watched the second half of the movie The Rainmaker. When you only see half of it, you just get mild showers.

Getting sleep is good in this process. I guess it is good for everyone. Bob makes it a little more difficult. The research manager often comments that she sleeps until she wakes up. I guess that is true for all of us!

One of the reasons that the research manager wakes up early is to do more research. Today, she presented me with the need and benefit of more vitamin C and even vitamin C infusions. So, I have begun to look into this.  There is always something!

And there is always the 200 of you that read this blog each week. Thanks for your interest.

Good news and not so good news

Here we are, two days after my petscan and one day after meeting with the doctor.

There is both good news and not so good news.

The good news is that there is nothing to worry about in my colon and and my liver is stable. That is pretty good.

The not so good news is that there is a modest increase in cancer in my lymph nodes. One or two spots are of particular concern.

The doctor presented two alternatives. One is to continue with the Xeloda at a lower dosage given my hand/foot syndrome. The other is to convert to maintenance chemo which is similar to my original chemo but without oxaliplatin which is what causes the major side effects.

The Xeloda option may not be effective in that my hands could get worse and a lower dose may not be effective on the lymph nodes since the higher dosage has not been.

The maintenance chemo option will be more effective and getting the lymph nodes under control should allow significantly longer survival. However, I will have live with the sniveling Bob. But if that is the most effective, then I have decided that is the route to go.

I can see it now. The driver will be saying "oh no, not more of that driving." But I have cleared with the doctor that I can drive myself. So relax. Besides, while being in treatment, it is good to have control of something and being able to drive is one of those things.

So, off we go on the next stage of this adventure. It will be interesting to see where we stand on the next petscan in 4 months.

Thanks for your interest, support and prayers as always.

White Blood Cells

A slightly more interesting week than normal.

Let's start with the hand/foot syndrome. While my feet seem to be surviving, my hands are becoming more of a challenge. After two weeks with no Xeloda, they are still fairly red and sore in spots. I am using cream frequently to try to bring things back. Dr. Patel said that the area between the thumb and the forefinger will blister and crack if we move to stage three and that will encourage infection. I was/am on the edge of stage two. As mentioned previously, if I get to stage three, I will have to stop doing Xeloda and in the absence of an alternative, will have to revert to regular chemo infusions. My feet are helped in part by some new Skechers shoes that are very comfortable. Hmmm, does Skechers make gloves?

That, of course, turns the focus, in part, on white blood cells. Surprisingly, my count was down this week when I expected it to improve. Most of my other numbers were decent with one exception. The protein in my urine was high. This may be caused by the Avastin which I have infused every three weeks.. We have to keep an eye on this.

My platelets are holding up significantly from three or four weeks ago. The research manager is still crowing about her finding papaya and papaya leaf extract and beet root juice. She is constantly putting reminders in my way to remind me about the beet juice.

Yesterday, I had two teeth extracted. This was an interesting process. The whole thing took only twenty minutes. They took some of my blood before starting and put it in a centrifuge to isolate the white blood cells. These were then put in the gap caused by the extraction. I have had no pain to speak of. I have to eat soft food (the research manager read me the list of foods and slyly omitted mentioning the ice cream!) I am getting a little tired of soup.

I felt well enough to go and play bridge this afternoon and did alright with a new partner. However, tennis is out of the question until at least Saturday. I feel that I could start tomorrow, but.......

The schedule this week and some caution about the heat and the teeth has ruled out the far infrared sauna this week, but last week was sure interesting. I got to the sauna and the receptionist Helen was busy running around and said that she wished she could join me. Now, let me tell you that the research manager had suggested that she and I could share the sauna, but since I had resisted the suggestion, it would have been hard to explain why I was willing to do it with Helen. So, I was in my own little private peaceful world. for the session.

When I got out, there was a younger woman sitting waiting and Helen said that she wanted to ask me some questions. I said to myself "Oh Boy, here comes another offer to share the sauna." But it turned out the questions related primarily to how tired I got from the session since she had gotten really tired the first few times. We got into an interesting conversation about auto-immune diseases and then eventually the research manager and my blog and the rm's appendix in my book.

Life continues to be good. Thanks for all your interest, care and prayers. They all give me energy.

Next stop. Petscan on this coming Monday. Always a nervous moment.