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.

Home recovery from bowel resection surgeryThe ABC’s of Bowel Resection Recovery @ Home I did not make an exhaustive search of the internet concerning

Copy of blog on Meandering Thoughts

The ABC’s of Bowel Resection Recovery @ Home

I did not make an exhaustive search of the internet concerning home recovery after bowel resection surgery. Most of what I found were what to expect after surgery but while still in the hospital. I wished I had some information on the recovery after you left the hospital and were home. I did have support from a sister who had uterine cancer, but that is not a bowel resection, she could only tell me so much. I had a niece and daughter that had a hysterectomy but once again not a bowel resection.

One thing my support group did get through to me was be patient it will take a long time before you start feeling well, food will not taste the same and your stamina will be very poor. All of those things were true. They warned me about elevated anxiety that was to prove accurate. Other than relatives I could not find actual experience concerning issues I may encounter while recovering at home.

I decided to write about my own experience and perhaps it might help others who undergo the major surgical procedure called bowel resection.

I am writing this at the end of week 5 after surgery. I just did not have the motivation or inspiration to write it earlier, so I may leave out some details but I believe those details will be minor.

About the Author:

I am a white male, 62 years of age. I take medication for high blood pressure, high cholesterol, arrhythmia, and am a Type II diabetic, In addition I do encounter episodes of Premature Ventricular Contractions (PVC’s) although infrequently. Sounds like I am not doing so well but actually I consider myself in pretty good shape. My problems are under control and I do exercise regularly. I am also a recovering alcoholic with over twenty years sobriety, and I quite smoking thirty years ago.

I was required to see a cardiologist prior to surgery to assess my ability to withstand the procedure. The cardiologist perform EKG tests and an Echo Cardiogram and found no evidence of blockage, I passed the stress test with flying colors and was OK’d for surgery.

About the Surgery

Surgery went well. The suspicious mass found in the Colonoscopy was down low in my large colon. The Doctor attempted laparoscopic surgery but ended up having to use the traditional surgical technique of opening the abdomen. So my stay in the hospital was 6 – 7 days instead of 4 – 5. If you want to read about recovery in the hospital go to Google and search under Bowel Resection you will find several sites that give you the check list of things the hospital staff do to aid in your recovery. Remember, each hospital is a little different and all surgeons do not do things exactly the same ways so don’t be concerned if you don’t see certain things you read about being done. However, ask questions.

We are not alike

Everyone of is different. Our bodies will react differently, however much of what we experience will be similar. I do not pretend to suggest that what you read below you will experience. You may however, experience similar events and draw knowledge and/or comfort from knowing that you were not alone.

Anger

Often when I am uncomfortable I want to be left alone. Remember that people around you do not know the level of discomfort you feel. It is easy to feel that you want people to do things for you but you do not wish to talk, you can’t have it both ways. People who are around need to try to understand your level of discomfort, by the same token you need to practice a little patience.

Anxiety

I was told that anxiety is part of major surgery.

My first bout with anxiety was in the hospital. Having found out the growth was malignant but caught very early didn’t really ease my mind. I think the anxiety comes from a combination of anesthesia; the pain you encounter and the fact that you realize you are dependent on a group of people for your needs. Perhaps a little of having to come to grips with your own mortality again is part of the equation.

Don’t hide that you are fearful. It is a common occurrence. I would tell the nurses when I was afraid, sometimes they were able to help me, sometimes just being their eased my fear. When I came home I would get these anxious moments. Some people are sleepers, in other words when they feel bad they are able to put their heads down and go to sleep. I am not, I stay awake, my mind seems to take its own lead and I can become quite anxious. One other thing, pain medication may give you freedom from pain, but it does not necessarily allow you to rest. I got wired (high) and had a real hard time falling asleep.

Make sure your Family Doctor is aware of your surgery. Surgeons know little of anti-anxiety drugs while Family Doctors deal with anxiety a lot. If you experience anxious moments call the Family Doctor, he may be able to help. (See the section on Drugs for additional information of anxiety.)

Bowels

My bowels were cut on, they did not like it. They were trying to figure out the new operating methods with a loss of direction. It took three days at home, nine days after surgery before I had my first bowel movement. I was eating soft, bland foods I am sure that contributed to the time lapse. The Surgeon had told me to go ahead and resume my normal diet when I got home, HA!

First of all food doesn’t taste good. You might like Peach Cobbler, but it won’t taste the same. My appetite was almost nonexistent. I had lost twenty pounds in the hospital and continued to lose at home.

I will tell you this; your bowels apparently failed basic high school physics. They are unable to tell the difference between solids and gases. Early on at home I would have a bowel movement and the stool would slip out. Very little strain, it was like the way was greased and out it came. The problem was I would go a little a lot. The first few weeks I would end up sitting on the commode fifteen to twenty times a day. Sometimes I could go, other times I could not, however I felt the need to go almost constantly. Even after five weeks I have some trouble.

Panty Liners: Yes that’s right Panty Liners. My wife made the suggestion. It seems that I suffered from leakage of some sort. I am working my way through my second box of Carefree Body Shape Long (46 liners). They have an adhesive that allows you to attach them to your underwear. I am wearing briefs. Sometimes I have a bowel movement, some times I have gas, sometimes I get a little of both. In addition I get some leakage apparently when I pass gas. Either use panty liners or stock up on underwear and be prepared to change often.

Some other difficulties:

1. I experience the feeling like I had to go to the bathroom often, early on in some cases almost constantly. Most of the time it was a false alarm, but the problem was I could not differentiate between the real thing and a false alarm.

2. Hang fires, these are very uncomfortable. You feel like you have to have a BM (bowel movement) So you sit on the commode, sure enough a stool comes, problem is you cannot void the entire stool and it breaks off leaving you with an incomplete BM. Your muscle tone is such that you cannot void the remaining stool. So you are left with this constant feeling of having to go, but you can’t. It is uncomfortable as hell, however within a hour it will pass. Be patient. In the meantime you walk around with a constant straining feeling. (Oh well at this stage of your recovery what else were you going to do, play tennis?)

3. Rabbit pellets: Sometimes you will feel like you really have to go, when you sit on the commode a stool the size of a rabbit pellet comes out and that’s all. It is not really uncomfortable, just disappointing.

4. Lost confidence: This is a term my Dad used when he had diarrhea. I come from a family where passing gas, breaking wind, farting is a normal humorous event. I have spent untold hours laughing over this topic. It ain’t funny in recovery. I normally do not encounter stomach problems, but now my stomach bloats quite often. Sometimes I can pass gas to relieve the symptoms. However, quite often I’m not sure what is going to happen, sometimes I pass gas sometimes it feels like a little stool came along for the ride. Go check. I have also had to hurry to the “john” trying to hold the event in only to pass gas in spite of all my cheek clenching.

It gets better. I am coming to the end of week five since surgery. My bowels are still not settled, however I am having longer periods of freedom from feeling like I have to go. I am still wearing Panty Liners though, and still experience some type of leakage, but I am growing more confident.

Care

I was fortunate. My wife took off two weeks from work so she could stay with me through recovery in the hospital and the first week at home. Our daughter is a surgical nurse for a hospital in our area and was in between jobs so between she and my wife I had twenty-four hour coverage the first week while I was in the hospital. In addition, because of her surgical background she could shed light on the operation, but not much on the recovery If you've heard the term patient advocate, I suggest you have a relative with you at all times in the hospital to look out for your care. .

I recommend you make some provisions for care at home during the first week or two. Obviously the hospital has professional care givers on duty around the clock. However, you have to remember they are caring for a number of patients, not just you. You can have a problem that in your mind requires immediate attention and having someone there for you helps.

At home, you will need help. Your abdomen is sore, you feel like hell, your bowels are giving you grief and there is nothing enjoyable about the first week or two, or more. Having someone to help you or just listen to you bitch the first week is helpful.

Dehydration

When I left the hospital a few of the nurses reminded me to drink plenty of water. At home my stomach was so upset I drank soda to try and burp and relieve the gas build up, I finally became so sick I drank little at all. At the beginning of week four after surgery my daughter who is an LPN on a Medical/Surgical floor of a hospital up north came to visit. She performed a patient assessment and during a simple what is called pinch test she felt I was dehydrated. This was on a Sunday morning after I had been through three days of being really sick at my stomach all day long. I felt so bad I was ready to go back to the hospital. After my daughter decided I was dehydrated and began reading me the symptoms of clinical dehydration a lot my symptoms were covered in her information. I began to drink water. A lot of water, within hours the symptoms started to let up, the upset stomach went away, my appetite improved, and my tolerance for my somewhat spicy pizza was OK.

The message is drink lots of water. I now have breakfast, drink a little coffee then about 10:00 AM I start sipping a large glass of water and have it with me throughout the day. I don’t know how much water I take in, but it is a hell of lot more than I did before. I perform the little pinch test on the back of your hand to see of the skin tents or snaps back down. If the skin tents slightly instead of returning to its original position immediately you could be dehydrated. After increasing my water intake my hands look better, less wrinkled than before. So drink lots of water.

Drugs

When I came home from the hospital I should have waited some time, maybe up to a day before I took any pain medication. The reason: to ascertain the level of pain I was encountering. I found out from a pharmacist that drugs flush out from your body in a half life. In other words, if a physician says the drugs should flush out in four hours, what that means is one half of the drug level will flush out in four hours. For example, you may lose the pain fighting capability of a drug in four hours, but the drug isn’t gone so you could end up with a drug build up lasting longer than anticipated. One other thing, usually the Doctor prescribes the pain killer to be taken as needed, put as much time between pills as you can stand.

This is why I recommend you determine the level of pain you are experiencing. Reason: when you in the hospital you will have had access to some pretty powerful pain killing drugs. Plus you will have a PCA, which is device with which you can administer your own pain killing drugs on command, within reason. You may not be aware of your level of pain because you and the nurses kept it disguised while in the hospital.

I have a fairly high tolerance for pain. I made a mistake though and just kept on taking the pain pills at home without understanding what the side effects were and whether or not I really needed them. The instructions for my pain pills were every four hours as needed. That means do not take them less often than four hours, but take them as needed, and I never let them flush out to see if I needed them. This led to a nasty experience.

When I first arrived home I started taking the pain pills without waiting to see if I really needed them. The pills were the generic form of Lortab 500 MG. The first few days I felt pretty good, I wanted to talk to people, I wrote emails, I acted just like I did when I drank, exuberant, sentimental, and quite emotional. Our daughter pointed out that I was “wired.” Later in the week I started encountering spells of anxiousness. As the weekend approached I decided to get on the program of taking these pain pills every four hours. I grew increasingly anxious and fearful. Finally on Sunday morning at 3:00 AM I took a pill and tried to lie down. Within fifteen minutes I jumped out of bed and began pacing the floor, wringing my hands and telling my wife I was so afraid I did not know what to do. I was exhausted because the drugs were not letting me sleep any more than four hours a night and now I was so afraid of laying down and not waking up I couldn’t sleep. It was not a pretty scene.

About 4:00 AM I went down stairs and got the drug monograph and read about the side effects. There was one section that said, “Notify your physician immediately if your experience any of the following: Anxiety, Fear, Shallow Breathing.” The reason I was so fearful was that when I lay down it seemed difficult to breath.

I stopped taking the drugs. Further research lead to no satisfactory resolution to my problem by calling the Surgeon on Duty at the clinic performing my surgery. In fact the Surgeon on call said he doubted the pain pills caused the anxiety. Finally after waiting for the local Wal*Mart to open a Pharmacist on duty said the drugs could definitely cause fear and anxiety. He was no help in suggesting an alternative, but he was the person who explained drug half-life to me. Finally calling my Family Doctor’s new clinic he joined got me a Doctor who did a mea culpa. This Doctor suggested a natural sleep remedy OTC (Over The Counter) and would not prescribe something else as it would just be adding another drug. I was in trouble, exhausted, sick, sore and needed help.

Later Sunday I took some Benadryl that helped me sleep but that left me feeling drugged, nauseous, and lethargic. At least I got some sleep.

Daily I was having an upset stomach with nausea. The Benadryl induced sleep was not good, I felt lethargic and the rest was not satisfying.

Finally on Friday I went to the Family Clinic my normal Doctor was at, but had to see another physician. He prescribed some Phenergan for nausea, Lunesta as a sleep aid, and Nexium to prevent a stress ulcer in my stomach. These helped. The nausea subsided by getting off the Benadryl, I was able to sleep at night with the aid of Lunesta, and I guess the Nexium was doing its thing.

Sleep aids can cause dependency. The prescribing Doctor told me to take a Lunesta before bed for the first week, then go to bed and sleep. I did that, and it worked. The second week he asked that I try to go to sleep without Lunesta, but if I did not fall asleep within half and hour to take a pill and go to bed. I found that I did not have to take Lunesta again. I only took two Phenergan because I was not experiencing severe nausea as I had been. However, I was still encountering an upset stomach almost every morning.

Finally, two weeks later I did go see my regular Family Doctor, and was it good to see an old friend. This Doctor had me continue the Nexium, he felt that was a good idea. In addition he prescribed Flomax because I was experiencing frequent urination. When I say frequent I mean like every half hour or so. He also gave me a 0.5 MG pill that was the generic Xanax. I got a stern warning not to use these pills regularly. They were just to be used when I had an anxious moment and no more. In over a week I have taken one of these pills, it was good, but I really don’t even want to take another. One problem the Doctor did uncover was I have a slight urinary tract or bladder infection. This can result from the use of a catheter in the hospital. I am taking a generic from of CIPRO, an anti-biotic, that leaves you light headed and a little dizzy for a few days as your body adjusts to the medication. It is a fourteen day drug regime and I am completing day four. Already though I notice a difference when I have to urinate, the pain is lessened, the stream is stronger, and it doesn’t burn when I go.

My Advice: Read the drug monographs concerning the drug you are taking. For example, when I take Nexium I’m not supposed to ingest any food for an hour after taking. The anti-biotic doesn’t work well in the presence of milk. The Doctor’s don’t tell you this. It is worth the time to have the Pharmacist at your local drugstore explain the side effects. I have found Doctors to be unreliable in drug interaction.

Drugs I have taken during home recovery

Nexium 40 MG Capsule: The Family Doctor recommended I take this medication for a couple of months. I guess being a Type II diabetic and with the type of surgery I might be at risk for some type of ulcer. The Doctor said I might get a metallic taste in my mouth, and I do.

Hydroco/APAP10-500MG Capsule: The pain pill. Make sure your are aware of the side effects, and like I said, I wish I had not taken any at first to see what level of pain I was at. If you can get by without, that’s my recommendation.

Promethazine 25MG Tablet: Generic for Phenergan. I have only taken two of these pills. I took them when my stomach was extremely upset. If I could deal with the upset I did, but twice I took the pill and it worked well.

Lunesta 3MG Tablet: I was prescribed 30 pills and told to take them at bedtime for the first week. After one week I was to try to go to sleep without them. I only needed them the first week.

Alprzolam 0.5MG Tablet: Generic for Xanax. I was having anxious moments, especially late at night that interrupt sleep. My Family Doctor warned me to use these pills sparingly as you can form a dependency. In a week I have only taken 1 pill. The fact that I have them provides about as much comfort as taking the pill does.

Ciprofloxacn 500MG: Generic for Cipro. A slight bladder/urinary tract infection was detected so this anti-biotic was prescribed. You have to take two pills a day for fourteen days. You do have to watch your dairy product intake as it can effect the effectiveness of the pills. Once again, read the directions. This pill is having some effect on my body, the first day I was light headed and I experienced bloating. The drug is working, the pain I was encountering when I urinated has diminished.

Flomax 0.4 MG Capsule: I was urinating often. The first couple of weeks at home it seemed like every half hour, even at night. The Doctor prescribed this medication to lessen the frequency. It seems to be working, but I am drinking a lot of water to aid the anti-biotic so I might be my own worst enemy.

Exercise

I have always had the attitude that you need to exercise some. I am not a fitness buff, I’d like to be but I seem to lack the discipline. However, recovery will be aided if you will just start walking. I have a small home, my first walking track was around the living room and kitchen. Many times I did this because my stomach became upset while eating, but other times I just walked a few laps.

The Doctor’s will tell you that it stimulates the digestive system, and it does. Within the first week I walked around our circular driveway. I will say this, you will push too hard. I cannot over emphasize the lack of stamina you will encounter. I took this attitude, today I walked one lap, and tomorrow I’ll walk two. You will find that sometimes you cannot walk at all because you might encounter one of those half-step back days. Those are days that you did a little too much the day before and now feel like hell.

Walking is important. It gives you a sense of accomplishment and I think helps your body reestablish a baseline sense of normalcy.

Food

The Surgeon told me when I left the hospital to resume my normal diet. I couldn’t, I was encountering an upset stomach daily and had to force myself to eat because I knew I needed the nourishment. Spicy foods aggravated the stomach upset and brought about bouts of gas build up that I could not expel. I could not even manage a good fart, and me who enjoys it so much. I drank sodas to prime the pump so to speak, in other words the carbonation encouraged me to burp, it did work some, sometimes not. I still have a bloating problem five weeks past the surgery. However, I also might have a Gall Bladder problem that is causing the frequent upset stomach. I exhibit some symptoms, plus the CT Scan as part of a pre-surgery check revealed I do have Gall stones. Taking everything into account it is difficult for me to say the upset stomach is from surgery; too many possible contributing factors. Just don’t over do the food, I don’t think it will be a problem; you won’t have much of an appetite for the first four weeks.

Be forewarned though, food will not taste the same for as long as four weeks after surgery. I have some favorite dishes that we tried and nothing tasted as I remembered it.

Gas

Before I could go home from the hospital I had to pass gas. I think what they are looking for is that your digestive system kicks into gear. It does have to be restarted after surgery. Warning, if you think your farts don’t smell just wait. I used to be a drinker and I thought beer farts were bad, hell after surgery I almost got up and left the room. It does ease off in about a week.

However I do suffer quite often from bloating that I don’t seem to get rid of right away. As I said I have been diagnosed with Gall Stones so my Family Doctor thinks that could be contributing to the stomach discomfort.

Hemorrhoid

I hope you don’t have one. I have been occasionally bothered by a hemorrhoid through the years. Usually it is no big deal, a little Preparation H and within a day or so I’m fine. However, when your bowels ain’t happy, your hemorrhoid ain’t happy. The second day home I pushed my little friend. The problems was I was going a little a lot, therefore I had plenty of opportunity to piss my little friend off. When I was first home I called my Doctor’s nurse, who are great people to befriend by the way, and asked what I could do. I was told it was too close to the surgical date and that try Vaseline or some such, but no ointments that could shrink tissue. My little friend hurt like hell, especially when I would have to sit on the commode, which was often.

Two weeks after surgery the nurse told me to go ahead and use Preparation H. My little friend did not shrink down, but at least the pain left. After five weeks now, the pain is gone, he is still there, but is showing signs of going back into hiding. It was a miserable period. So make sure early on you don’t push too hard to have a bowel movement.

Nighttime:

For the first few weeks I hated nighttime. My abdomen ached, I had to urinate often, my bowels weren’t regular so you might find yourself up numerous times a night. When I woke in the morning my stomach would be upset, or at least unhappy. It just was not a pleasant time for me. It gets better. Now, I still get up several times a night, but I always have. I rest fairly well, but I do still encounter an unhappy stomach on occasion.

Epilogue:

As of now it is six weeks since surgery. There is no doubt I am recovering. There are only two issues left, my stomach and bowel regularity. I have a feeling those will linger for some time. I am comfortable when I go to bed, the anxiety I experienced has diminished to its old acceptable level. My stamina is improving, however I still tire quite easily. Recovery has been difficult and will go on for sometime. As my Surgeon told me, remember, you have had major surgery. This ranks very high on the list of major surgeries. It will take time to recover, but be assured you will feel better. I hope all goes well with you, if you wish to contact me for any questions, or updates feel free to use my email address: tfloria@grnco.net.

Update: January 2009

Now two years have passed. I continue to learn. I am not sure if I am continuing to improve or if things change as part of a natural process. I still have bowel issues, but they aren't bad. Having suffered a small bowel obstruction six months ago I find that I have some psychological issues. I am convinced the cancer is gone. In fact Thursday I had an appointment with the surgeon who did the procedure and he stressed that the cancer was Stage 1, it was caught so early that I am cured. My risk of occurrence is the same as someone who never had colon cancer, 1 maybe 2%. However the bowel obstruction could occur at any time. I found that experience very miserable and do not want to repeat that episode. However, now that I know what the sensation is I would probably tolerate the problem better, but it scared the heck out of me.

I still find that certain foods seem to trigger gas attacks. Some fatty foods can cause me to go to the bathroom as if I'd taken a strong laxative. I do not experience diarrhea, but the stool will be soft. I will go a lot and often, then when the system has cleared itself I start again. I do have a number of days where I feel normal. My confidence grows, and I'm feeling real good. I am more sensitive to digestive tract action, bloating, little pains that might arise then disappear. I have a feeling they were always there, I just wasn't sensitized to them.

Life is good, I have no limitation, enjoy all manner of food and spice doesn't seem to make a difference. Fat content does, but not all of the time. I am learning to live in the new paradigm.

Good luck all.

Update: March 25, 2009

I meant to include in an update some time ago a difficulty I ran into called a bowel obstruction. One of the reasons surgeons do not like invasive abdominal surgery is you can have adhesions. I don't know a lot about them, but as I understand it they can be where tissue once separate can grow together. It almost sounds as though you might have one attach two separate sets of tissue.

June of 2008 I began to experience a stomach ache, the old fashioned kind I refer to as a green apple stomach ache. Just painful, no gas, no diarrhea, nothing but a tummy ache. It began on Monday morning and lasted in varying degrees of discomfort all Monday and Monday evening. Tuesday morning it seemed better and I took my morning walk, however after eating breakfast it got worse and I lay on the bed much of the morning. About noon it really became painful, to the point it was difficult to walk upright. I took a laxative as I hadn't gone for two days. Nothing happened. While sitting on the commode I became very sick and in severe pain. I ended up lying on the bathroom floor in a fetal position as that was the only way I could get a little relief. I broke out in a pouring sweat, and had chills. My wife told me she had never seen anything like it. I vomited but not much relief. I finally got dressed and went to our family doctor.

They took an X-ray, ran some blood tests, and I became sick in his office. They gave me a shot for nausea and pain and sent me to the emergency room. I was diagnosed with Small Bowel Obstruction and they put a NG tube in my nose. I believe that stands for nasal gastrointestinal tube, it is how they pump your stomach. All manner of stuff was pumped out. The surgeon who had performed my surgery came in and told me I had this obstruction. The NG hose also creates a slight vacuum in the stomach and sometimes the obstruction which was described as a kink in a water hose, will relieve itself. Otherwise surgery is required to relieve the obstruction.

Fortunately the vacuum worked about 3 AM I began passing gas, loose bowel and for about an hour and a half I kept the staff busy helping me clean myself, filling a portable commode about three times, and having to change my gown and bedding about four times. It was embarrasing but the staff was very understanding and forgiving and supportive, God bless them. The next morning the surgeon removed the tube, I was put on a liquid diet for one day to see if the obstruction had disappeared and I was released. Two days later I was on a two week car trip by myself to Michigan to visit relatives.

Symptoms:
Tummy ache that gets progressively worse.
You do not pass gas, nor have a bowel movement.
Nausea with vomiting
Progressively increasing pain.

What to do:
Make sure the pain isn't gas. You'll know that. A small bowel obstruction gives you a band of pain across the top of your tummy in a band from left to right. A large bowel obstruction is much lower, below the tummy.
Switch to liquids, don't keep stuffing food in as I did even though you get hungry.
Notify the Doctor and get the hence to an ER

Follow Up:
I had a SBFT (Small Bowel Follow Through) You drink a foul barium solution and have to wait until it coats your small bowel then the radiologist looks at your small intestines and looks for an obstruction. Normally there isn't one which indicates and adhesion. Otherwise surgery.
If it is a large bowel obstruction then it means a colonoscopy which I would frankly rather than the SBFT. My bowels really reacted poorly to the barium and my stools where white for two weeks.

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.