Some confusion

I am now almost six months from reversal surgery. I am still fiddling around with maintenance chemo. I had an experience about three weeks ago that stopped me cold. I awoke one Sunday morning about 1:30 AM having to use the bathroom. I began an endless procession of about every fifteen minutes having to go. And I was gong quite a bit. It culminated about 10 hours later with a burst of watery diarrhea and when I sipped some water to prevent dehydration I got violently ill and through up twice.

I had just started the chemo on that Saturday. I stopped taking the chemo on Sunday when I was not sure if I was having a reaction from the chemo or I was experiencing a short lived bug.  By Sunday afternoon I had that general achy feeling, week, tired and restless that I associate with a virus. Monday I felt fine and resumed the chemo. Terry also seemed to come down with her own version of the bug on Monday so we both thought it was viral.

However, my system did not seem to want to straighten out. I get going a lot, the stools were quite loose, I had accidents, I reverted to wearing pads and it was kind of frustrating.  I had a pretty bad accident at work and had to change underclothing, but could not change my stained slacks so I was force to walk around backwards much of the afternoon.

On Friday, no let up in the activity had taken place so I called the Dr. because I was worried about the weekend. I was told to stop the chemo and not to begin it again until the end of the month. My system has straightened out some what, but still not back to the way it was before chemo. I started taking the chemo pills yesterday and we'll see what happens.

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.

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."

Six weeks since surgery

This recovery is much easier than the first recovery period four and half years ago. I think that I had no idea of what to expect after surgery four years ago that I was some what traumatized by the whole affair. At six weeks, when the surgeon said I could return to full normal activities I felt terrible. Today, I feel quite good, I've been doing some chores around the house and returned to work over two weeks ago. I also think that I handled the pain medications very differently this time. I was careful to not take so many that I suffered side effects of anxiety and sleep deprivation. I knew my stomach would be upset for some time and just took that as one of the symptoms encountered during recovery.

I am looking forward to the removal of the stoma and reattachment of the small intestine. It is a great source of pain and irritation right now. We are changing the appliance every three days in and effort to get the skin to heal. Plus I lay on the couch with the stoma exposed to the air for an hour when we change the appliance in and effort to let the irritation dry up some. However, I am experiencing bleeding on the lower side of the stoma as the skin is so irritated by the acid environment that it has eroded that far.

Other than that I feel quite good and have decent energy for just six weeks.

Beginning week six since surgery

I am feeling quite well. The "bag" is not too comfortable and I am having skin problems. The output from the small intestine is quite acidic and has really irritated some surrounding tissue. However we are changing the "appliance" more often, I am trying to lie still for an hour or so with the stoma and surrounding skin exposed to the air so it will help dry the site up, and we have stopped using paste to help seal the appliance as Terry, my wife, feels perhaps the paste is irritating my skin.

Kristi, Ned & Buddy left today to return to Indiana. I went upstairs with Terry and took a nap. I slept about and hour and a half which is quite long for me. I realized that while Kris was here I was staying up in the afternoon and was becoming very tired at night so I guess I still tire. Other than that I've been lifting some heavier objects and doing a few chores but not too much. Terry continues to do most of the work, but I am contributing more and more each day, I hope!

I am ready to have this bag off and the small intestine reattached. However there are a number of advantages I've noticed since I have the iliostomy:

1. To some degree I control when I empty the bag. I do have to empty it several times a night which has me up in the middle of the night, but during the day I can choose my time.
2. I do not have the sense of "urgency" to go to the bathroom I had prior to surgery. I was constantly walking around with this pushing feeling like I had to go, but rarely could.
3. My stomach does not seem to become so upset with different foods. I can't feel it become upset, although once or twice I have felt it do what I call clench when some type of food hit it.
4. I am not bloated and unable to pass gas as before surgery.
5. I do not have the abdominal pain and the pain in the anal area that I had when I became bloated.

Other than that the bag is inconvenient. It slaps against my leg when I walk, it isn't irritating but just feels odd. I certainly don't like the looks of it when I'm naked, but then I'm not body wonderful anyway. The bag changing and emptying can be messy and cause some problems, but Terry, God Bless  her doesn't let me get down about that. She gets in there and helps even though I'm sure she is turned off by the whole issue.

So pluses and minuses, in the long run if I have a colonostomy I'll handle it and be grateful for the opportunity to extend my life further into old age.

Want to know how it feels.

Just in case someone is curious what it is like to wear an ostomy bag I would suggest the following. I have an iliostomy which is considered temporary for my specific cancer issue. So the stoma or opening that the small intestine pokes through to the outside world is on my lower right side. I suggest you take a baggie, fill it half way with water and put it in your right pants pocket. If you want to be more realistic tape it to your side with some duct tape and peel it off every five days. Be sure to wear it to bed at night, it really screws up your sleep positions. Plus it crinkles from time to time. You might want to blow some air into it to simulate gas. It puffs up real nice under your pants make you look like you have all of a sudden grown some odd shaped tumor. Ah yes, ain't life grand. Its OK, it is temporary, I hope. But keep in mind all of the folks that wear a permanent bag. You would get used to it I am sure.

Hospital Reprise

We ended up the first week out of the hospital running to some Dr.'s appointments and got into some extended time away from home that exhausted me. I did not rest well and just felt really worn down. Then bang, Friday morning about 7:30 lying in bed thinking about getting up I began to experience a pain in my lower back, right side. This would be August 13 two days after I was out of the hospital. As I lay in bed the pain intensified and came through to my front. I got up walked around, didn't know what was happening and lay down trying to see if it would stop. It kept getting worse until I was literally moaning with every breath. Finally about 10 AM I told Terry to call the surgeon's office and tell them we needed help. I could not stand the level of pain intensity I was feeling.

The Dr. had us drive to NEA Baptist hospital where they ran some blood tests and took and X-ray. Then we went to the Dr.s office and they were just in the process of closing as he wasn't seeing patients Friday afternoon. He had seen the blood tests and the x-ray and could find nothing specific but I was in bad pain. So about 2:30 he had me admitted to NEA Baptist and we drove back over there. In the meantime I had been given nothing for pain relief.

Once there they took history, got me in bed and took care of my ileostomy bag which had begun to leak in the Dr.'s office, I was a sight boy. Wet clothing, pain, was literally begging for some relief. It was the most prolonged, intense pain I had endured in my life. Finally about 6:30 PM I was administered some dillaudid that is a powerful pain killer and started to feel some relief.

I was scheduled a CT scan and just before I went down for that procedure a nurse came in and administered another injection of dillaudid , a bit early, but thank God for nurses who know their own mind. The pain was so severe that I got sick on the CT scan table, but it just turned out to be the dry heaves as there was nothing in my stomach. I had not eaten all day. By the time I got back to my room I was settling down and I was given one injection of dillaudid every hour, but I had to ask for it. I asked believe me, or Terry keeping vigil reminded me.

The next morning both Terry and I were not in good shape. Terry was exhausted from the Friday's stress of carting me around, worry and not getting much rest. She is a tough old bird and I am fortunate that she fell in love with me, that's for sure. Anyway I called my daughter Kristi who is my in family medical consultant. I explained where I was and the pain was still present although now more tolerable. Kristi called back about 9 AM and said she could rearrange her work schedule and drive to Jonesboro and help relieve Terry. We both accepted.so Kristi drove down Saturday afternoon arriving about 9:30 PM. Terry left about 5 PM and Kristi's presence allowed Terry to stay home Saturday night, Sunday and Monday. I was released Monday evening about 6 PM.

Kristi's coming was a blessing. She helped me in the hospital, translated medicallese into laymen's language and talked with the nurses in a professional manner which allowed her to learn all kinds of information. We even played cribbage and had a good time. The pain really started going down Saturday afternoon, and was tolerable. I kept up the pain meds as I had some bouts of pain erupt somewhat unexpectedly. Kristi was a great help in moderating my pain, plus it was just so good to see her.

By Monday the Dr. had put me on hydrocodone and percocets and wanted me to try to lay off the dillaudid, which I did. But Sunday and Monday I was taking two percocets  to relieve the pain which is a heck of a dose but it worked. So Monday evening the Dr.s said there was no specific cause of the pain, they had though kidney stone but there were no evidence of it on the CT scan or x-ray. So the called it pain due to the surgery, which it may be and I will experience pain for a number of weeks. I have medications at home that I have been taking sparingly and have had no recurrence of the intense pain since and this is now two weeks past.

Surgery: I lose a day

I am prepped and brought to the OR staging area about 6:30 AM. A few people are around, they start and IV and the anesthesiologist comes and talks to me to determine what he needs to do. I mention I do not want morphine as a pain killer as I had a bad reaction to it, got high and couldn't sleep, the last surgery I had using that a the pain killer. A drug called Dilaudid was used in place of morphine and seemed to work quite well. It relieved the pain, I did not get high, nor did I suffer sleeplessness.

I got to my room from recovery and have no idea what time it was. It was late, I think the surgery was more involved and a lot tougher than originally anticipated. The rest of the night people watched over me, cleaned my new iliostomy bag, and provided relief from pain. Terry was with me and slept in a cot provided by the hospital. The day is just a blur and I found myself several times not even counting August 4 as a day I had any recollection.

Mission accomplished.

Purgatory: The time in between

Radiation and Chemo stopped Tuesday, June 28. Now five weeks until surgery on August 4. The intervening time was tough. I endured severe cramping, my butt hurt constantly, and the fatigue was amazing. At first I crossed the living room one chair at a time. The most relief I could get was lying on a bed where I could roll around, pass some gas and otherwise stretch out and not have to use the energy to support my body.

As the weeks went by my strength gradually built up. Not very well, but I was able to stay up for longer and longer periods each day. Eating was a task, food just did not look appealing and the first few bites make my stomach revolt so I would stop and wait for that feeling to pass. The pain in my rear end never did leave but I did become somewhat more settled. Occasionally I would take a pain pill if I did too much but I made the five weeks and looked forward to the relief the surgeon would provide.

Chemo Chonicles

Day One: A Beginning?
May 23, 2011 I have an appointment at the Ben E Owens Radiology Center at St. Bernard's Hospital in Jonesboro, AR. The waiting area is light, open and airy. The walls are covered with plaques of some sort. I have not looked at them as I don't want to give into the maudlin feelings of oh, what a wall of hope, or how nice. I'm too new, and I expect a good outcome from this experience.

Besides I have so far kind of conditioned myself to be at ease, maintain my sense of humor and I supposed I am so caught up in the belief that everything will be OK that I don't really feel part of the treatment scene yet.

Terry is with me. God Bless her! She sits not talking about my condition except in the sense that we go through this treatment, then this surgery then you are OK. She reads women's magazines that contain recipes and articles of interest. Occasionally she tears out a page or a portion of a page to take home some new food preparation to try.

I am called back to the treatment area. I think I know where that is, but this is day one and I'm not familiar with the lingo even though I've been to this lab twice before it has been to see the Dr., not to be one of the newbies beginning radiation therapy.

I am taken to a simulation room where a nurse puts me on a table, lines up the x-ray machine and they take pictures to see if the marks they have drawn on my hips and back align with the PET scan and they are zeroing in on the right target. She takes one photo of me, face shot, for their records. Then while I'm lying on the table with my buttocks exposed she takes a picture of my ass. I have my head in a horse collar type cushion so I can lay face down and breath. I do get her to laugh however when I ask her if she is going to blackmail me by having that picture framed with a Polar Bear rug and printed on the internet.

The x-rays are shot, the Dr. comes in and tells me everything is looking good. The nurse has adjusted the bulls-eye on my ass and everything is good to go. I did break the nurse up again when I replied to the Dr.'s comment that everything is looking good by saying, no one has ever said I had a good looking ass.

After the radiation treatment we go over to the oncologists office to get the chemo pump. Our time to be there is 10:15 or after radiation. We are there a few minutes after 10:15. Now begins the frustration. We wait until 12:30 PM to get into the chemo room. By the time they flush the port, run a anti-nausea drug into the port, wait for the medicine 5FU to be delivered and hook me up to the pump it is 2:30 PM. An hour to burn my ass and four hours to start the poison.

The waiting area has a number of people who are waiting as are we. One gal, fairly young looking, tall, slender and wearing a baseball cap with a bandana underneath looks too young to be there. Some are older people sitting with a spouse or friend. There is a sense of quiet, of seriousness and I suppose trepidation. I see one man, looks like 50's, a big man in a wheel chair. He is in a white tee shirt and red lounge pants. As a young woman approaches pushing him he is wiping his eyes, obviously he's been crying. I hope he is OK.

The tall slender young woman has been here before. She is like an old trooper, reading a book and patiently waiting.

Terry and I are called in. We enter a sparse room with recliners and stiff plastic chairs along side the recliners. There are people sitting there hooked up to IV's. A couple of fairly young men sit at one end, both hooked to IV's and they look too damn young to be there. An elderly black lady across from me doses as the IV does it incessant work.

Finally a nice nurse named Judy comes and explains to Terry and I the process. She tells us about the drug I am getting, a drug called 5FU. She explains possible side effects, however she stresses that they won't occur for a while and with this drug dosage they may not occur at all. I hope they don't, but my body is tense. I have been having bowel issues all day with a lot of bleeding. I still don't really have any worry or concern, but the fact that I am in an oncology center, that the people around me have cancer, and so do I is kind of hitting home. I never wanted to be here. I used to cringe when I would go by a hospital and see the name oncology, or chemo lab. I thought, "I hope never me." Yet here I am. I think my mind is not permitting me to be overly fearful or scared. At least I don't feel that way right now, and I have been sleeping quite well at night.

The day is about passed. We ate a late lunch at Red Lobster, a new restaurant in Jonesboro and one of our favorite chains. Lunch is good, but my bowels are giving me fits and I have and accident on the way to the bathroom that takes my last panty liner out of action so now I am trusting to the luck of the Gods that I have no more accidents until we get home.

Day Two: Nothing Yet

Day two is about in the books. My bowels are fairly quiet today, I've had some peace. I do not feel any effects of the chemo/radiation yet, but I've been told I have about a two week honeymoon. I am tired this afternoon but yesterday was stressful with a lot of waiting and I guess the anxiety of beginning this trip.

Day Three

Arrived about 8:10. Got in about 8:30 and on the road about 9. Met a man who is having 41 treatments and it sounds like he had prostrate cancer that has come back. He made a living driving truck both OTR and Local Delivery. He was enjoyable to talk with and seemed like he was hoping for the best but it was a matter of the luck of the draw. I still find the center pleasant and the staff real nice. The are efficient and quick and you are in and out in a short period of time. I don't think I feel any effects of the radiation or chemo yet, but my bowels sure are in a state. I spent this afternoon going back and forth between the john and my desk. I have gas I cannot pass easily and feel bloated and experience cramps. I'll talk to one of the Dr.'s about that, but it is what has been going on for a long time. I wonder if surgery will help?

Day Four: A Heavy Load

I got to the radiation center at 8:02, at 8:15 I was zapped and on my way. I was low on gas and went to a gas station where I discovered I did not have my wallet with me. I determined I had not taken it with me when I left the house. So I headed back home. About halfway home my cell phone rang and it was Murray, a friend and one of my instructors. Murray had been diagnosed with kidney cancer that had involved the liver and was pressing against the heart. He was slated for surgery Friday. Murray proceeded to tell me that a surgeon had come in and dropped a bombshell. Recent tests indicated the tumor was inoperable. He was given a year to live, maybe two. Another man, my Information Tech was buried Tuesday. My computer instructor has ovarian cancer and while she had surgery there is still cancer in her body. It was devastating. I cannot imagine what Murray is thinking or going through. It tainted the entire day and I was lost. Seemed like all we could think about or talk about was the terrible news that befell and admired colleague. Made my issues look awfully small.

Day Five

Met a man yesterday in the waiting area from down around the Forest City area. He is undergoing 41 radiation treatments. I saw him this morning and he was saying that the last few days he has really been feeling poorly, fatigued, no energy, just sick. He only has two more treatments left and I hope he is OK. Me, I still feel OK. I sometimes sense a little upset in my tummy, but I'm not sure if it is gas or an upset tummy. Nothing comes of it and frankly after passing some gas it clears up.

The nurses continue to be nice. The first dose of radiation I get is through my back to the affected area. The other two shots are from the side. I count the seconds each dose is and the one through the back seems to only be 10 seconds in duration. The ones from the sides are 20 seconds. I asked why and was told the tumor is closer to the back and not so much to go through.

Memorial Day Weekend: An Eventful Freedom

At night I wake up frequently for a bathroom trip. Most times I pass some mucous and have difficulty urinating because I cramp so much. Part of the IBS problem. However, about 4:30 AM I woke from a sound sleep with the feeling that I had better get to the bathroom now. I struggled to get my pump pack from behind my head in the bookcase head board of our bed and apparently tore out the needle from my power port. Now what. I waited until 6 and called the emergency number for the oncology nurses and they determined that we needed to flush the port and make sure it was OK, but they would not attach the pump because there was no guarantee the line was not contaminated.

So Terry and I went shopping and finally waited until afternoon to drive to Jonesboro to the clinic where we met a wonderful nurse named Lea and she flushed the port in my car sitting out side the clinic. It was a bit surreal.

I felt a little odd. It was the world had become a little disjointed to me and while I was traveling roads I have known for years I felt disconnected, as though I were observing a different reality. I talked with Terry about that and she said I am under a great deal of stress. I guess it is a stress I don't recognize, but as she said, "Look, you are dealing with the death of one of your employees, another employee was just told his tumor was inoperable and he had a year, a third employee is in the hospital with ovarian cancer that remains in her body after surgery, plus you (me) have cancer and daily have to come to Jonesboro for radiation and wear a pump that is injecting medicine into you all of the time. In addition you then drive to Blytheville, over an hour away and put in a full days work. Stress, you have a ton."

I guess I hadn't put it all together that way. I do know while dealing with the illness of my other employees the remaining people want me to do the talking, and I do feel a little like, hey what about my issues.

Today ended OK. We had a nice steak dinner. I laid around all day and dozed some. I feel a little more settled and am hoping for a good night's sleep tonight. At least there isn't a pump to pull our and I can get up and down in relative freedom to go to the bathroom. We have to rejoice in our victories however small.

Weekend Respite: But not so hot

No pump, freedom. Not so. I have been encountering a large build up of gas and going to the bathroom quite often. My stools are the consistency of pudding and I have had several accidents. Once it starts to come, I cannot stop it. I've had to come home and change, clean, it has not been a weekend of class. I get gas to the extend my belly hurts, then a couple of nice long farts and I'm OK. I did take some Immodium this morning to see if I couldn't slow down the frequency with which I go and that seems to have worked, however I been quite miserable with gas. I gets is six of one, half dozen of the other.

As a result it has been pretty much a lost weekend. The weather has turned warm, but my activity level has been low cause I can't get very far away from the bathroom.

Tomorrow, back to radiation and to the oncologist to have my pump reinstalled. I will report about my bowel misery, but I'm not sure they can do much.

Treatment 6:

Talked again with the man from near Forest City. Today was his last treatment. He was pleasant and we shook hands and wished each other good luck. Long morning, reattached to my chemo pump and we are at killing the little bastards again. Still drive to work and feel pretty good, but bowels are showing out today. Feel like I have to go and can't. Frustrating and mildly painful.

Treatment 7: Starting to get a feeling.

I am feeling a little unpleasantness around my bottom. Kind of a twinge and sharp little pain. Not really bothersome, but I guess the side effects of the radiation are starting to make their presence known. The rectal bleeding has stopped.


Treatment 8: Get some salve.

I stopped at the nurses station on the way out and got some salve for my bottom. She told me they start out with a conditioner and if more is needed they move up to some more highly medicated cream. Still feel pretty good, but I did experience my first possible bout with fatigue yesterday. I got home about 6:30 PM and about 8 I was crashing. Went up stairs read for a little while and went to sleep. Feel pretty good today but didn't get much sleep as I was mulling over some situation at work. It is Friday, June 3, 2011 and I have two days without radiation. Still feel good.


Treatment 9: A couple from Piggott

Met a man from Piggott who was receiving radiation. He usually follows my time slot. Seems like a pleasant fellow and his wife is nice too. He told me he started losing weight while working in New Orleans and soon had trouble eating. He went to the doctor and was diagnosed with esophageal and stomach cancer. He said the tumor is pretty big. It looks like they are doing to him what they are doing to me, trying to kill the tumor or shrink it greatly and then surgically remove it. I felt bad. He was nice, straightforward and pleasant. We just kind of got talking and he addressed his troubles without bitterness or sadness. I wondered what his prognosis was but didn't ask. We don't ask. We all have possible good outcomes. I hope his is.


Weekend Two:

It is hot here in Arkansas. I went out a little bit, helped water the garden and Terry and I planted a Climatus called Ms. Bateman. We planted her along a dead cedar hoping it would grow up the cedar I was tired Saturday and laid around much of the day. Sunday though was tough. I started going a lot and encountering strong involuntary cramps. I hurt and felt bad much of the day. I am starting to see a rash forming on my head and back of my hands. My butt is starting to burn and I have some ointment for that.

Treatment 10: Monday June 6, 2011

My behind is definitely tingling and my lips feel like they are chapped. These are effects of the radiation. The rash on my face and back of my hands I suspect is from the disinfectant used to clean the cushion I put my face into when I get my radiation treatment. I lay face down. The cramping continues when I sit on the commode and I am having a hard time urinating. I find that after a cramping episode if I sit with my butt on the edge of the bath tube I can get the muscles to relax and then I can urinate. Tomorrow I talk to the Dr.'s and I'll ask them if they can help. I did not go to work today, I just felt pretty punk.

Treatment 11: Heros All!

Radiation then I met the radiologist, Dr. Allgood. He seems to think that a prescription of Vallium would help ease the cramping. I'll talk to Dr. Hightower first he's the GI, but it is really painful now and happens every time I sit on the commode.

I go to the oncologist office, but before I went to the surgeon's office and got my surgery scheduled. Tentatively it is set for August 4th, my first wife's 68th birthday. Hope she has a lucky day and transfers some of the luck to me. Then to the oncologist. What a long wait. I was there
about 10:15 for a 10:30 appointment. Blood work first, make sure my blood counts are OK. I did not get into the oncology treatment area until after 1 PM and didn't get out until 2:30 PM. Gad!!!

Met another man and his wife who were there for chemo. He has Hodgkin's Lymphoma and it has spread to his bones. They say it is treatable but not curable. He was told he has maybe 5 years. He said, "They don't know everything." He and his wife visited and played with another lady's baby, talked with people and were most out going. You could not help but like them. Yet he faces a catastrophic illness with an uncertain outcome. I was in the chair awaiting a new pump reload when they came in. The sat down and had lunch of cheese, crackers, sausage and fresh fruit. Visited with all around while he was getting his chemo. Heroes, yes we all are, we go on as this is just a minor set back and life will go on. Of one thing I am certain, regardless of the outcome, life will go on.

Treatment 12: Halfway!

Started Dycyclomine today to try and relieve the cramping. I felt some ease, but I know it can't be the medication yet. I did have a good nights sleep. However, this morning I had an episode, I went often and a lot. Unfortunately my radiation treatment was scheduled around the episode and I had some pretty tense moments in the radiation treatment center. I made it without a major accident, but it was tough. I felt bad and went back home where I have been the balance of the day. I am cramping yet, a difficult time urinating, and bloating plus some slight stomach upset. Terry, God Bless Her, is taking care of me better than I deserve. She is a wonderful person and I am so lucky to have her as my wife. Saw Al, the guy and his wife from Piggott who was also experiencing a bad day. He cannot eat for the tumor in his stomach and has a feeding tube. He can't eat six cans of sustenance a day, just four and is still losing weight. C'mon God, these people deserve a break. Maybe the treatment is the break he will get.

Treatment 13: Halfway

I started using Immodium more regularly and it has slowed down the frequency I feel I have to go to the bathroom. However when I do go, the skin around the anus is irritate and it hurts to go and to clean yourself. I have an ointment to apply, but you wipe it away every time you go. At least I'm going less. However, every time I sit on the commode I get these cramps that are just debilitating. Then I can't pee, so I have stand, sit on the edge of a hard surface, or squat to get the muscles to relax enough so I can pee. Going to the bathroom is a five minute episode in pain and frustration. At least I've slowed the frequency.

The young man from Piggott was there this morning. I look forward to seeing him, he is so easy to visit with. He has a feeding tube because his stomach cancer is so big he cannot eat normal food. He spirit is good and his girlfriend seems nice and she has committed to staying with him.
Because Terry doesn't come with me he asked if I was alone. I told him my wife is home. He said I don't know how anyone alone could make this program, I agree you need some support.

Treatment 13: Side Effects Kicking In

My anal area is extremely sensitive. I got some Lidocaine to mix with the ointment I already have and it will locally numb the area, for a time. It works. I continue to have cramps that really interfere with my life style. The contort my lower body so much it makes me yell out in pain. Most of the time I do not go, then I have to go through an exercise of sitting on the edge of the bathtub to get the muscles to relax to the point I can urinate. This ain't fun kiddies.

Treatment 14: More that half way.

I made it to work today, but I get tired about mid-afternoon and have to go home. I hurt so much from the sensation of having to go, but I cannot it is not funny. The treatments are obviously impacting my health. But, I am more than half way through. Eleven to go.

Weekend Three: Horrible

Worst weekend of the treatment session, work weekend of my life. Cramping was almost non-stop. I would try to stand, walk, anything to let it to let go and it was painful. I passed some bowel at times. I was able to relax the muscles so I could pee from time to time, but mostly I was in constant pain. If the worst pain I've ever experienced is the pain of a pinched sciatic nerve that radiated down my legs, this is an 8. Saturday night I slept little. Sunday night I was up most of the night with this constant pressure in my anal area that made me feel like I had to pass gas but couldn't. I do not know when I've spent a more uncomfortable time.

Treatment 15: Some Relief


I got some medication from the Dr.'s,  Valium for the cramping from the radiologist and Percocet from the oncologist for pain. They seemed to work some as they eased the pain but they did not relieve the frequency of the cramping and that was very painful.


Treatment 16


It is getting painful to walk. I am feeling upset in the abdominal area much of the time and just don't feel well. Fatigue is an issue, I am exhausted by the time I get back home and pretty much spend the day lying on a bed.


Treatment 17


Had an eventful day. Terry was driving and I began an episode as we got to the radiology area. That means I had severe cramping and passing stool every time a cramp hit. I was able to make the bathrooms, but soiled the liners I had on. We went through every liner and then even had to borrow some scrubs from the radiologist. I still had the oncologist to go and that was going to be hours long. Dr; Blatchley took pity on me and had the pump removed for a few days. But while we were waiting to see him I used a nearby bathroom three times, and then while he was in the examination room with me I had to use the bathroom three more times. I struggled to keep from making a noise but the pain is so intense I can't help but moan and groan. 


We had a horrible experience on the way home. It is a half hour drive and I had three cramps and three BM's while Terry was driving. The last one happened just a little ways from home and was so bad it had me on my hands and knees in the back of the van trying to ease the pain anyway I could. I'm sure it scared the hell out of Terry.


Day 18:


Now the days are just something to get through. My anal area constantly hurts. I walk funny to ease the discomfort and Terry drives every day now as I can't stand to sit still for very long.


Day 19 - 25


All the same. Just get through the radiation and see the oncologist when necessary. They left the pump off for three days, then I got it back on, but by then it didn't really have any increased effect, I was as miserable as I was going to get.

Here we go again

I am one day away from starting a round of radiation/chemo treatments. This is a new protocol for me, as four years ago I simply had surgery and was considered cured. So much for that bright diagnosis. However, the cancer is probably a recurrence because it is located at the site of the joining of the resection. In talking with the radiologist I asked that if it is a recurrence then it would mean surgery nothing less. He said yes. It was probably at the microscopic level and developed slowly over a period of time.

I am thankful that Dr. Hightower insisted on a colonoscopy when we could not stop the bleeding. It looks like from the results of the PET scan we got it in time, it shows no evidence of having spread. I do not know what stage it is, probably II or III, but according to the statistics both stages are highly curable.

I continue to have constant bowel issues. I do not believe these issues are related to the cancer as I've pretty much had these issues for the last four years. I expect to have a stoma and a colostomy as a result of the surgery. The position of the tumor is simply too low in my colon for resection, at least that is in my mind. The radiologist concurs although the surgeon feels he may be able to resect.

I find my mental condition to be OK. I am not fretting, I am not anxious and I do expect a good outcome. So, tomorrow the trip begins. This time a longer and more aggressive treatment protocol and one I hope results in the cherished words, "You're cured."

Saw the plumber

Terry and I met with the oncologist yesterday. He did a lot of general background research and took many notes. In the end I will have a port surgically installed in my left should that will feed chemo directly into my blood stream through a pump I will wear. The chemo should not cause any hair fallout, nausea or other side effects. He did say I may get some sores in my mouth and/or some inflammation of the lower colon. These side effects occur in about 10% of the cases. Other than that the chemo sensitizes the cancer cells so they are more susceptible to be killed by the radiation. Five weeks, that will be a long time. Then after that, surgery followed by maybe a little more chemo to clean any remaining cells.

I have a PET scan on Tuesday, May 10, 2011 which is used to stage the radiation and to see if there is any evidence of cancer cells located elsewhere in my body.

And away we go!

Moving along

Wednesday morning I had a stress echo-cardiogram. Passed with the heart judged normal. I was kind of proud that they had to take the test to the full conclusion to get my heart rate up to above 129. The cardiologist said he saw no signs of wall thickening that would indicate blockage and if there was any blockage it is insignificant. Good news.

Thursday AM say the radiologist. He is the electricity guy, today the oncologist who is the plumber. The radiologist was a character but gave me an excellent explanation of what will take place. Instead of a pinpoint beam of radiation it will be more of a widespread beam. The radiation kills cancer cells by using their strength against them. Because cancer cells replicate faster then normal cells they do not carry a food reserve to withstand stress. The radiation breaks their DNA strand and they have no reserves so they die. However, normal cells which replicate slower carry reserves and while some may die, some will heal and go on.

I will undergo radiation treatment five days a week for five weeks. I will also receive chemo at the same time. The combination is meant to shrink the tumor and to kill any cancer cells that may have invade surrounding tissue.

I will also encounter some side effects in about the third week of treatment. The side effects will consist of sunburn on the outer skin, some irritation of the small bowel, bladder and the anal area. I will feel the urge to go more often and will feel some pain and skin irritation, however they have medication to relieve the pain.

At the end of the radiation/chemo treatment I will wait about four to six weeks, the surgeon said not that long, so we have a difference, but the reason for the wait is to let the area heal so the surgeon isn't cutting into an already bloody, inflamed area. After six weeks scar tissue starts to build up making the surgery more difficult.

So at this point I have been greatly impressed with the physicians, the clinics and the medical staff. My attitude is good, in fact most days I forget I have cancer. Today we see the oncologist and I'll add that information later in the day.

An old nemisis returns

Last December I was at my wits end. I had gone through about four of the worst months I have ever experienced. Ever since my bowel resection four years ago my intestinal tract has been disagreeable, but from August to December it was down right ugly. I did not seem to be able to have a BM without my system being upset. If I went it was usually an episode of repeated visits to the porcelain shrine accompanied by some action, some inability to go, cramping, bloating and pain that extended from my stomach region to my anus. Severe pain, and quite frequent during the day.

Without realizing it I was giving up and becoming very depressed. I never entertained the thought of harming myself, but I did feel that if this was going to be the quality of my life going forward I didn't want it.

Finally at the recommendation of my family doctor I saw a GI specialist. When I described the symptoms he said they were classic symptoms of Irritable Bowel Syndrome or IBS. We began treatment with some anti-depressants and anti-spasmodic medications. Very rapidly the pain left and the frequency of my going diminished some. I seemed to be more tolerant of foods that previously had upset me. Progress was made and I was elated.

In addition the anti-depressants kicked in and my mood brightened to the extent my wife noticed and commented on my improved attitude.

I have bled from the rectum of and on for a number of years. I attributed it to hemorrhoids which are a common occurrence after bowel surgery. The GI thought of hemorrhoids also, however if we were unable to stop the occasional bleeding he wanted to do a colonoscopy. After three months of meds and improvement the bleeding continued and we did a colonoscopy. The GI did not expect to find anything but did not want to move on to other meds without making sure there was no inflammation or tumor.

Monday, March 18 was the colonoscopy. Sure enough Dr. Hightower, the GI found a tumor located very low in my colon right near the incision of the previous resection. It was too large to move. So after four years cancer is back in my life.

The visit with the surgeon was positive and relatively matter of fact. I will undergo six weeks of chemo/radiation followed by surgery. The CT scan seems to indicate the tumor is all contained in the colon so I am hopeful for another successful outcome.