Current Happenings 3-11-12

A week ago I woke up early Sunday morning having to go to the bathroom. I then started a parade back and forth for almost 10 hours. At first I went rather normally, just often, pretty soon I did not feel too well, my stomach was cramping slightly and I would feel weak. About 11 AM, I thought I may be getting dehydrated so I downed a glass of cool water, went upstairs and promptly threw it up. Then the output changed to a watery liquid and was just like a colonoscopy prep.  The diarrhea stopped early afternoon but I felt weak, achy and lethargic. I came to realize Sunday evening it was probably a bug. 


I had started my third week of chemo on Saturday and had stopped Sunday when I was going to the bathroom an abnormal number of times. By Monday morning I felt pretty good so I restarted my chemo. However, Monday afternoon at work was not good. After lunch I began going, and one of the problems I encountered was loss of control. I ended of staining my pants and having to change underwear. I had no change of clothing. I was finishing up a budget proposal so I had to stay and get it done. I went home, ate some dinner and later that evening the frequent trips to the bathroom began again. with very loose stools.


Tuesday was quiet, but I was empty.


Wednesday the same until night. I experienced frequent trips and had to wear briefs with a pad to bed to prevent accidents. Immodium seemed to slow the tide but my stomach felt bloated and I had a lot of gas. I also couldn't control the gas and had several embarrassing events in front of colleagues. 


Thursday was peaceful until night came and then a real strong repeat of previous frequent trips and loose stools. 


Friday I called the oncologist and spoke to the nurse. Friday was a very peaceful day. I was told to stop the chemo and not begin again until I had seen the Dr. which will happen in a couple of weeks. Yesterday was pretty good and I slept peacefully last night. This morning I can feel some pressure in my abdomen which I take to mean I am filling up. This afternoon I have gone several times and it is very soft, but the stool if formed which is a good sign. Perhaps with the chemo stopped for now I will go back to my previous way which though often was comfortable. 

First week of maintenance chemo

I just finished my first week of maintenance chemo. I am taking a drug called Xeloda, pronounce Zeloda. It is in pill form and I take eight pills a day, four in the morning and four at night. The body converts the drug to 5FU which is a standard drug used in the treatment of colon cancer. The oncologist wanted to add another drug to the regime but the insurance company would not pay for it and I did not qualify for help from the drug company. So I guess from one standpoint I am received a less than recommended treatment, but then the cancer recurred in the same sight at the previous surgery so if it is there this drug ought to do it.

The side effects are numerous and range from diarrhea, constipation, fatigue, aching bones, to sores in the mouth. So far I have experienced  none. I take the drug for one week then stop for a week. I do have some Dr. visits in the meantime to measure my blood count as these drugs can lower you immune system.

I still feel very good. I have frequent bowel movements, maybe 10+ a day, but there is no pain or inflammation.. I do not bleed and am for the most part comfortable. The consistency of the stool is like a heavy glue which makes cleaning tedious and uses a lot of toilet paper. However, it is a long way from what is was a year ago, a long way and I am grateful. Life is good right now.

Maintenance

Today, February 4 I began my chemo maintenance. It has been a long road. I had major surgery five months ago after enduring almost two months of radiation and chemo therapy at the same time. I have detailed the effects of that and will do so no more. In October I went through a reversal surgery to reattach my small intestine to the large intestine. I work a iliostomy bag for over ten weeks. That in itself was an adventure.

The reversal surgery was good, I recovered swiftly and feel as good as I've felt in years.

The oncologist recommended I have follow up chemo to kill any guerrillas. At first the insurance company refused to pay for it saying it was not necessary and that chemo maintenance for recurring colorectal cancer is experimental. Then the oncologist had his financial person contact the drug companies to see if they would donate the medicine. I was to take two types of drug, oxyplatin and Xeloda. One of the most often used drugs in fighting my type of colon cancer, which is a basal cell or Sauamous cell, a drug called 5 FU. It was the drug used in my initial round of chemo because it works in conjunction with radiation to make the radiation more deadly. It also is used in treatment of metastasized colorectal cancer. So that was one drug. The other drug is used when the cancer has spread and if more effective for that type. There is no indication that the cancer has spread anywhere, however, it did recur when I was pronounced "cured." I did not qualify for the second drug. So I am taking only Xeloda.

I take four 500mg tablets twice a day Today, day 1 I have no effects that I can tell. The side effects are numerous but the Dr. told me this drug is well tolerated so I hope things will go OK.

Three months since reversal

Tuesday the 24th I am going in to the hospital for a sigmoidoscopy. It is a look at the first 12 inches of your colon. The surgeon wants to see how the anastomosis looks and if there is any recurrence of cancer.  He said he does not expect to find anything but if there is something this he can just burn if off so I don't have to go through chemo/radiation again. I don't expect anything either. I am feeling fine, I have no pain, no uncomfortable sensation when I have a BM, no bleeding, just pure comfort. I do vary between stools that are easy to pass with little cleaning issues and gluey stools that have cleaning issues, but aside from the aggravation it is no problem.

I cannot tell you how much I enjoy going shopping with my wife and not having to search for a bathroom every fifteen or twenty minutes. We get to enjoy dinners out without me being absent holed up in the bathroom experiencing cramps, pain and discomfort. Life is good.

I still have not begun the chemo maintenance program and wonder if I will. According to the medical community that regime is not necessary, however according to my doctors they believe it was be a good thing to do. We are still at a standoff about who pays. The insurance company refuses. I have applied to the drug companies for their help but have not heard back yet. I am a little concerned but not too.

I hope everyone who has a bowel resection has the success that I am enjoying. This is the best I have felt in years.

Week 10 Since Iliostomy Reversal

It is now Week 10. I am so pleased. The first six weeks of recovery from the reversal were difficult and worrisome. I seemed to go a lot, I experienced some pain and bleeding, and occasional bouts of ease. About a month ago a change took place. The stools seemed to firm up. If I felt like I had to go I sat and went with ease. However the consistency was still a little glue like and I became accustomed to keeping a wash cloth in the bathroom to take care of the occasional excess. In addition, I had to wear a pad at night as I might pass a little stool and not be aware of it  until I woke up and then I had to change my pajamas.

About two weeks ago I noticed the stools continued to firm up and pretty soon the glue like consistency became more dry and clean up was almost nil. I laughingly referred to myself as the man with the Teflon ass, nothing stuck to it. The truth is, if I maintain a normal diet I have pretty normal BM's without difficulty and mess. However, if I hit a pretty rich diet hard for a day or two then the glue consistency comes back along with some messiness.

I have noticed that my system is more and more tolerant of the foods I eat. I do not suffer the extreme gas and bloating I suffered six months ago. I do not have any pain, if I feel like I have to go I have to go, no dry runs. I do not have any rectum, so the stool does not accumulate until I get a full feeling that allows me to go only once or twice a day. However, I can control when I go, to some degree, and there is just no pain.

I am so grateful. Yet I kind of feel like the other shoe will drop. The Dr.'s assure me that it will only get better and that in time the large intestine that is hooked up to the anal outlet will become more like a rectum and the frequency of having to go should diminish.

For the first time in several years my wife and I go shopping without me having to hunt up a bathroom every twenty minutes. We can go out to eat and I can sit with her the full time we are enjoying a dinner. Things are so much better now, there is a light at the end of the tunnel and it is not a train rushing towards me.

Fourth Week after reversal

I am feeling very well. My bowels are operating almost normally. I have control. I have some issue with some leakage and the consistency of the stool is like glue and seems to almost wick out. I can blot myself when cleaning up and just use a lot of toilet paper. I do find that washing my bottom from time to time helps reduced the burning sensation. I use that new micro-cloth. It is soft and not at all abrasive like a terry cloth wash cloth is. It also resists stains and fecal matter from clinging to it so it is not as disgusting as terry cloth.

I have been taking an Immodium prior to going to bed at night. It seems to prevent the need for me to get up numerous times in the night. It doesn't seem to block the need to go, but reduced the false trips to the bathroom.

I returned to work last week and that went well. I do have some episodes and the morning seems to be the time for frequent trips. I may have three to five trips in the morning depending on my food intake. However, I have much more control that I had before and can actually wait a while before visiting the porcelain shrine.

Things are going along well. I still get some stomach upset when I eat certain foods, but I don't notice it except for an increase in gas output. There is no pain, no bloating that can't be relieved and not a great deal of discomfort. I try to watch what I eat, but I am expanding my food types. A couple of weeks ago I tried some dry roasted peanuts and had a stomach rebellion. However, last Saturday I had a couple of hand fulls and everything was fine.

So far I am extremely pleased with the outcome.

Day 20, just at 3 weeks

I almost feel guilty I feel so good. My bowels seem to have reset and I almost have a routine. I eat breakfast in the morning, within a half hour to two hours I may have one or two BM's. After dinner, the last three night right about 8 PM I have about an hour and a half episode of three to five BM's, usually toward the lesser number.

My stools seem to have formed up, the burning sensation while not completely gone is hardly noticeable and I have control like I have not had in the past four plus years. Like I said I almost feel like I don't deserve to be so normal. However, it is only three weeks after surgery to reverse the iliostomy. Could I have a set back, I suppose so, but it is hard to imagine. The tumor is gone, the colon was resectioned over twelve weeks ago and had ten weeks to heal before it saw any activity. The joint where the small intestine is stitched seems to be OK, after all that is now three weeks and there has been no sign of discomfort or pain. I hope nothing goes back ward. I do end up asking my self the question Do I deserve to be normal? The answer, "You bet your sweet ass I do."