Part 4 Between Surgeries

I have come home, only to have to go to the wound clinic two days later to have my wound evaluated and treated. Then comes the ugly events at IHop. Back home and days of recovery begin, but with the added burden of having this plastic bag attached to my side. It isn't so bad at night, I wear it under my sleep shorts and other than the rustle of plastic is is not uncomfortable.

The visiting nurse comes and helps us understand more about how to attach the "appliance." I will be wearing this appliance for about 10 weeks until the inflammation and incision heal from the resection surgery. For some reason recovery this time is not such a big issue. However, I've been through this before. I do not have the anxiety issue with pain pills because I watch what I take and only take them when I feel some fair amount of discomfort or pain. It isn't too long before I'm taking one in the morning, one in mid-afternoon and one early evening and not taking one when I go to bed because they do not knock me out but put me in la-la land where I don't sleep but just feel good.

The appliance is another thing. We don't seem to master the ability to make it adhere for very long. Plus the output is acidic and I start having skin issues within the appliance. We have ointments to put on, we have antiseptic medications but nothing seems to work. The acid just keeps eating the skin and keeping it irritated. Pretty soon we resort to me lying on the couch when we are going to change the appliance and letting it be exposed to the air for as long as I can stand it. I say stand it because the output from the stoma is not predictable, nor can I feel anything. It just seems to come and I have to blot it with paper toweling. We are going through a lot of paper toweling and it is tiring to lay there and watch you small intestine belch forth waste.

As my strength returns we start to make excursions to stores and shops. For the most part it isn't too bad as long as the appliance doesn't leak but occasionally it does and we have to leave early to come home. About a week after surgery I was lying on the bed in the morning relaxing and thinking about getting up when I noticed a pain in the lower back, right side. It wasn't too bad and considering the surgery I did not think too much of it. It is a Friday. As the morning progresses so does the pain until about 10 AM I am gasping from the intensity of the pain. It now feels like someone has shoved a knife through my back and it is coming out the front. It does not feel like a intestinal blockage, I've had that and the sensation is entirely different. This is powerful and intense.

I tell Terry we need to go to the Dr. We pile in the van, she is driving and I have taken a pain pill but it has not touched the pain. As we go into Jonesboro I am gasping in pain and poor Terry is equally upset. We go to the Dr.'s office, he looks at me and sends me to the hospital for a X-ray and blood work to check for infection. We bundle in the van, down to the hospital and it is excruciating. The attendants can tell I'm in distress and hurry along but still it is over an hour and a half before we have the results and head back to the Dr.'s office. We get there early afternoon and I am really suffering. There is no sign of any cause for the pain, no infection, the blood counts are normal and the X-ray reveals nothing. Then my bag leaks, and I mean it is full and leaking and they have no replacements at the Dr.'s office. The nurse cleans me as best she can and uses adhesive tape to make a temporary repair in the meantime no pain meds. Terry is starting to get upset with the suffering I am going through and starts adding her voice to the urgency.

Finally I am sent back to the hospital and admitted. This is now about 4 PM Friday afternoon. Over eight hours of pain, no pain meds. I am admitted and put on the third floor med/surg area. Nurses are coming in, a RN comes in to take my history, Terry has to do much of the talking as I am in too much pain now. The nurses initially are not able to replace the bag, finally Terry tells them certainly in this hospital there is someone who must know how to properly change the bag. Finally they get two nurses from the oncology ward to come up and they are successful so at least one part of the dilemma is solved for the time being. I am taken down for a CT scan and the pain is so intense I get sick and vomit while in the room only there is nothing to throw up but I have to go through the convulsions. At one point the young nurse tries to help me up from the table I was lying on to have the scan and we can't make it so I inadvertently grab her inner thigh to give me some leverage. I am embarrassed and apologize, she understands and says it is no big deal. I got off the gurney though, back into the wheel chair and back up to the room. By now it is about 7 PM. I am convinced I have passed (a or some) kidney stones. The Dr. says there is no evidence of kidney stones and I finally get Dilaudid to ease the pain. However instead of a drip I am allowed one shot every two hours. A compassionate nurse comes in to put the drug in the IV and says let's see, here is one shot for the first two hours you've been here, here is one for the second two hours, and in forty-five minutes you'll be able to have a third. The pain starts to subside, but it is still pretty powerful.

In the meantime Terry is looking distraught. She has been with me every step of the way, pretty much powerless in the drama except as an empathetic observer. She looks like she would just like to sit down and cry. We have called my daughter Kristi to let her know and about the time I have received the first meds Kristi calls and says she is on here way from Chicago and will be there about two or three in the morning. It is as though an angel has responded. I talk with Terry and we decide she should go home, I am fairly settled and while still experiencing some pain it is milder and she needs to go home and rest. 

She goes home, I'm left to the tender mercies of the nurses and they are great. About 2:30 AM I hear Kristi's voice asking for directions. Here she is, smiling, tired but in my room. I am so relieved I am in tears, along with old "Misty Kristi."

There ends part 4.

Part 3, Resection

After the chemo/radiation work I had about six weeks before surgery so the inflammation and drug effects would lessen and heal For about two weeks after the cessation of the chemo/radiation I was still feeling bad side effects but pain medication seemed to make it tolerable. The problem I had with the pain medication was instead of making me sleepy and groggy I got wired, I fell in love with the world, and had a mellow buzz. It actually got to be quite enjoyable a few hours before bed to take a Vicodin and mellow out watching some favorite TV episodes. I did recognize the signs though and started limiting my intake of the pain meds as I could see a need starting to arise. Having been through that with alcohol I was not going to allow that to start with pain meds.

About week three after c/r I started to note some relief in the anal area as I guess the inflammation was lessening. I still had painful BM's and some bleeding but after week four the bleeding stopped.

The last two weeks before surgery I was actually quite comfortable. It almost made me think, couldn't we stop here. A few days before the surgery the doctor did a flex-sig which stands for Flexible Sigmoidoscopy. It is a short version of a colonoscopy designed to look at only the lower end of the colon. He said while the destruction looked quite complete the damage had to be cleared away and a new beginning made.

I had felt for some time that I would end up with a permanent colostomy because of the previous resection. Both areas of surgery were very low in the colon and I wasn't sure how much was left to reattach. However after four years of bowel problems I was really resigned to a colostomy and actually looking forward to the relief from having to pass a BM through my anal area. The doctor, however, said that if the margins were clean and he could get a little extra movement he would resection. I wasn't worried, either way would be OK, but he was pretty adamant that I should not have a colostomy if I did not need to. His words proved to be correct.

The week of surgery the flex-sig, a CT scan and blood work. This time I had my blood typed and had to wear a wrist band with that additional information in case I needed blood during surgery. That was new.

The day arrived, I was perfectly OK. I talked with the Dr. before and when the anesthesiologist came I told him that last time my experience with morphine was not good. Was there another drug that I could have that would not wire me up so much and cause the severe anxiety attack I had shortly after I got home. The anesthesiologist said there was a drug called Dilaudid that was used if morphine caused a bad reaction. So they switched me to that in the prep room and it worked well. There is a real reason for you to be involved in your care as your preferences or wishes may not be known and you have to speak up. So I went under. The OR was schedule for the max time 5 hours, it went over 6. I had quite a few adhesion and scar tissue from the previous surgery not to include the massive amount of burned scar tissue from the radiation. So I woke in the recovery room with a bag on my right side and a piece of my small intestine poking through my side. It is called an illeostomy as opposed to a colostomy. I guess I did not know what I was going to end up with.

Soon after I ended up in the oncology recovery ward with some fine nurses taking care of me. Terry was there and God love her she was there all of the time during recovery. This recovery went quite smoothly except for the illeostomy bag which plagued everyone even the nurses. It would leak, it did not feel too uncomfortable, but I sure knew I had something stuck to my side. One night nurse, a lovely lady named Michelle, was going to change my bag and went into the lab and got a class A work suit that has a mask and head piece not to say she was covered from head to foot with a plastic outfit, booties and gloves. She will always be known as the "blue smurf nurse." She changed the bag and by this time I was beginning to pass material, but it comes out as a liquid. It is the large intestine that is the water reduction unit, the small intestine is small because everything is like thin pudding. Ah the descriptions.

After five days of recovery, blowing up a lung capacity machine, and enjoying the attentions of pretty nurses I was forced to leave. However, during the transfer of my body from the gurney to the surgical table my left hip had suffered a rug burn. It was quite painful and somewhat bloody. So two days after I came home from surgery I had to go back to a Wound Clinic to have that taken care of. During that time my bag began to leak and the nurses there were experts in bag replacement showed Terry and I some things to look out for. 

When we left, I was famished. So we went to IHop. As I got out of the van the bag ruptured. So here I am with liquid running down my leg, Terry has a low sugar reaction and in we go. I sat through a good breakfast with my bag held so it wouldn't leak and I was afraid that I might smell but apparently the clothing protected me. All in all we made it, but that was the first of many episodes at home and in public with "the bag."

More to follow.

Cancer Recurrence Part 2

OK, the VA doctor missed the cancer. How do I know, the oncologist, the surgeon and the radiation doctor who actually felt the tumor with his finger all said it had been there for quite a while. The tumor had grown right along the anastamosis which is the incision line from the original resection. It was round the entire colon and was causing a partial blockage hence the IBS like symptoms. Tumors bleed which accounted for the bleeding. The radiation guy said that the cancer was probably at the cellular level and undetected for some time. However, once it became apparent there was no other recourse but surgery.

The doctors quickly outlined a treatment plan. First I had a "power port" implanted in my chest, upper left. It is a port with a titanium floor that you use to stop a needle from a infusion set. It is permanently attached under the skin, it can only be removed by a surgeon, and it serves as a port to supply chemo or even a regular IV drip. It is quite handy but needs to be flushed every two months.

Next came appointments with the other doctors on the "team." The oncologist appears to be the lead doctor and schedules all the tests. I had a PET scan which is similar to a CT scan but they have you drink a slightly radioactive dye and it is transported through the stomach via the blood stream to the major organ areas. Its use is to illuminate any hot spots that may mean the cancer has metastasized to an organ. It is kind of like waiting for the jury to come in, you hope there is no guilty verdict but you don't know yet. 

The PET scan proved negative. Then came blood work and the CT scan with dye. Then I started a 25 day regime of 24/7 chemo and daily radiation treatments Monday through Friday. The chemo was delivered through a pump that I wore in a fanny pack at my side and was attached to the "power port." The radiation treatment meant having your hips and lower back marked with a marking pen to show the site the radiation was to penetrate my body. 

The radiation guy said that the beam is not a pencil thin beam and destroys not only the cancer but good cells so it is rather destructive. When I started radiation/chemo for the first week I felt pretty good. One of the nurses gave me an ointment in the radiation center and told my that by the second week I may begin experiencing some irritation around the anus. If it got worse I was to tell her and she would give me some ointment that had a numbing effect. I continued to go to work feeling quite good and quite at ease.

By week three I was starting to experience some pretty severe pain around the anal area. Still two weeks to go. By the end of week three I was in constant pain and my bottom felt like it was on fire. Going to the bathroom was and exercise in controlled pain. I started to experience severe cramping in the abdominal area that I could only relieve by standing up. The cramping became so bad it made me call out. My wife was upset to say the least. My wife was a "brick" through the whole thing, she helped me, she sympathized when I needed it, she cleaned up messes I made because I was too sick to do it myself and made a worse mess in my attempts.

The beginning of week four found me begging the Doctors for relief. They sent me to the surgeon thinking maybe he might do an emergency colostomy to stop stool from being passed out the back end. Finally we settled on pain pills and stopped the radiation and chemo for a few days until the pain subsided. However, not before I had an absolutely humiliating experience in the radiation treatment center and the oncologist's office. I had accident after accident, almost continuous and my wife had to get me a pair of scrubs from the radiation nurses as I had soiled my clothes. We still had to go over to the oncologist to have the chemo pump removed. I had to go so often that I would come back in the examining room while the doctor waited for me and he was asking Terry about my symptoms. Then he'd talk with me a little more trying to find out the severity and out I'd go into his little bathroom where I would be put through enormous cramping, pain and bleeding. Toilet paper felt like sandpaper. 

Finally we left there and drove home. I did not make it. We stopped at the community center, I had an accident, I cleaned it up. We started for home again and just at the head of our drive way all hell broke loose. Poor Terry, driving with me screaming in the back seat area because I could not stand up enough to get the cramp to ease. It was a nightmare.

For the next two weeks I lay on a bed out in the trailer so I didn't disturb Terry and frankly so my screaming did not make her a nervous wreck. I lived on pain pills and some food. One period I went to the bathroom about every 15 minutes for about two days and was so exhausted I was just beside myself with emotional and physical pain.

Finally the radiation stopped. I went every day and the pain pills got me through it, but I had one hell of a fricasseed ass!

Thus ends stage two. It doesn't get better yet, but it does get better.

Cancer Recurrs

It has been some time since my cancer recurred. Not five weeks into recovery like my ABC of Recovery post. Some time has passed and perhaps memory dims slightly, and that is probably good.

February 2010 I decide to have my annual colonoscopy done at VA. I can get it done pretty much for free and I'm thinking the process is rather straight forward and the physician certainly is not going to make a mistake. So I schedule a consult with the VA GIguy. He is a older man, perhaps around my age, and has the personality of a slug. He sits in a cubbyhole office in front of a computer and I feel like I am talking with one of the Borg in Star Trek. When he takes my history and ascertains that this is colonoscopy number three meaning I am three years out from surgery and the follow up is necessary he lets me go. However, I am having some GI distress, frequent BMs, some pain associated with going to the bathroom, plus frequent constipation. His comment, sometimes people have to learn to put of with discomfort.

Even though I was not comforted by his lack of interest or concern. I went ahead with the colonoscopy anyway. The day before, prep day, was not good. The gallon of swill I had to drink made me sick and I threw up. I did complete the drinking. I was also supposed to give myself two enemas. I tried but could not get the right angle or the plastic bottle was difficult to squeeze so I got a partial. I went some more, but they wanted me to do another one so the fluid ran clear. Ha! I did one more in the morning and I thought I was going to miss my appointment because I was cramping so bad. We did make the one hour drive to Poplar Bluff and I was on time.

When I was prepped and into the procedure room there were two nice ladies in there that talked to me to make me comfortable. The Dr. came in, never said hello, boo, shit or hell. His directions to me were through the nurses, tell the patient to roll a little to his left. Then of all terrible things they found a little spec of fecal matter floating and the Dr. brought me out of the drug induced amnesia so he could tell the nurses to point out the fact that I had not cleaned out to well. 

Finally the test was over, the report was all clear and I went home feeling secure that all was OK even though my bowels were still not regular and I was feeling constipated from time to time.

By July of 2010 I was not doing too well. I was getting some cramping, I was constipated and having a difficult time going. Then I would have an episode and could not go to work until the rush passed.

I started teaching a class some distance away from home for a company and I was out of town every Wednesday for three months. During this time my situation became down right nasty. I hurt, I would eat a meal and about an hour later I had severe bloating, pain and would have to go to the bathroom. I found I had difficulty going, I was encountering the feeling of having to go very often, sometimes several times an hour. I was also passing blood.

I made an appointment to see my family Dr. and he upped my fiber pills to 8 a day, four in the morning and four in the evening. I went some, but still no real relief. So I made an appointment to see a GI guy. The same one who had found the polyp three years earlier that brought about a bowel resection.

I began seeing the GI guy in December 2010. When I described the symptoms which took some time he said it was classic IBS symptoms. He put me on an anti-depressant and some medications designed to improve the muscle movement along the bowel. After about a month the anti-depressant kicked in. Up until this time I was so miserable that I had told myself if this is the quality of my life going forward I wasn't interested. Oh, I was not suicidal but I was sure down. The anti-depressants worked. Within 30 days, and that is what the nurses had told me the cloud lifted and I was feeling better mentally even though my bowel situation was not much improved. 

Finally after three months of seeing the Dr. he suggested and I concurred that we have a colonoscopy done even though the one the February before was clear. He just wanted to see if there was any inflammation or infection.  This was April, 2011, in fact April 18, 2011. When I went under I was gone until I woke in the recovery room and heard the Dr. say he had found a highly suspicious mass and had scheduled me to see the surgeon. My wife asked why and the Dr. apparently in frustration over the results almost yelled, "he has to, he just has to." So started the second medical issue that led to bowel resection Number 2.

More a little later.

On TP

I sometimes give thanks to the inventors of toilet paper. When I was a kid a handful of leaves in the woods served as an acceptable substitute. Leaves are some what difficult to wield, often came apart in your hand transferring the offending substance to your fingers. If you were still eating a candy bar or sandwich it made the whole experience unappetizing. However, you did not have to worry about the toilet clogging up or the flush handle breaking. All in all it was not a very rewarding experience.


Besides it creates a whole new dynamic in this world if we did not have TP. I can just imagine people climbing precariously into tree tops to fetch the last few leaves in a densely populated area. What about at night, the trees might appear to be invaded by huge lightening bugs as individuals went in search of nightly relief. Plus what happens if someone couldn't hold it whilst searching for the appropriate bunch of leaves. It wouldn't be just bird shit falling from the skies. So thank you inventors of the TP, we are all in awe of your creativity.


There are several categories of TP that bear discussion. First of all we see the label "Strong." This means it doesn't tear under duress. I find technique has a lot to do with this issue. Because I encounter chronic diarrhea. Do not confuse the term diarrhea with the explosive watery output we get when we are sick or preping for a colonoscopy. Diarrhea has to do with frequency. On a bad day I may go to the bathroom 25 times or more. On a good day, maybe once, sometimes I even miss a day, oh do I enjoy that.


Back to the "Strong" classification. Well, actually one needs to discuss technique here before getting into the classifications of TP. My preferred method would be blotting. This involves folding the TP neatly into a square shape and then blotting the anal area instead of scrubbing. I find that if you are in the midst of an episode, repeated visits to the porcelain shrine,  that scrubbing can give you an RA (raw ass). This becomes painful with each succeeding visit and can end up very painful indeed. While a lubricant may help, you actually scrub it off on the next visit and just further exacerbate the situation. So blotting is my preferred method.

"Strong" holds up to blotting quite well. Once and a while on the way to the site the paper may fold on you leaving your fingers to bear the brunt of the blot, but other than washing your hands thoroughly it does not present too big of a problem other than mental.


The consistency of the stool may vary. When it is firm and torpedo shaped things are going well. In fact, I get into a state of "TA." Teflon Ass, this is when nothing sticks. Usually I can get away with two blots, the first to clean up any residual the second to insure the first was effective. This is primo! Too rich a diet, too much fat over a period of time, or some particular food that may upset the system causes the consistency of the "stool" to deteriorate. It isn't too bad if it gets on the thin side like pudding. Easily blotted it takes quite a bit of TP, but it is not too bad. I have been known to go through an entire roll of TP in under two hours. 


The problem begins as the stool begins to reconstitute and becomes the consistency of 90 weight gear oil, or lubricating grease. Now "Strong" becomes a bit of a problem as it moves the stool around as opposed to picking it up. This smearing effect has a distinct feeling and can be uncomfortable to the uninitiated. Beware of moving to "Soft" TP as this can create a very ugly scene. I have been blotting with "Soft" paper only to have it shred under my fingers exposing me to direct contact with the putty like stool. This does not wipe of the fingers to well leaving one reaching for the wash basin with perhaps a bit of paper hanging from their crack.


So, from this expert I recommend Strong. Now one manufacturer has come out with Strong & Soft, I don't trust it. Stay with Strong. I also find that four sheets are enough for any situation, I fold them flat. I find wadding them up to be uncomfortable for blotting and increases the smearing potential. 


So all you rec-to-files here some information you can really get into. Here's wishing you successful blots and clean fingers. Go to it! In another installment I will discuss the aspects of public toilets and the TP used in their sterile appearing stalls.

Now I feel like a survivor

The first occurrence of colon cancer was in January 2007. I had a bowel resection. I was told by the oncologist that I was cured, the polyp had no signs of entering the colon wall and appeared to be confined to just the polyp itself. Recovery was tough. I had a lot of things happen that I have documented in a blog that appeared in Meandering Thoughts, and I copied to this blog. 


I never felt like a survivor. I had bowel issues but did not think of them as a recurrence of colon cancer. In fact, I was treated for Irritable Bowel Syndrome. So when people talked about having cancer I kind of considered myself outside that horrible sphere. 


When three of the people that work for me came down with cancer and we lost two, I still thought of myself as not really having had cancer. That all changed April 18, 2012 when a colonoscopy revealed a large suspicious mass in my lower colon. Over a year has gone by and I still have not documented that ordeal in detail. I intend to do that before I forget some of the details.


I will say though, I now feel like a survivor. What my wife and I went through was not only tough, it was mean. Terry was there with me every step of the way. She cleaned up messes that are almost beyond description. She held my up when it was difficult to stand, she learned how to replace a collection bag when I had a stoma that was creating it's own level of distress. If I ever wondered about Terry's commitment, any question I had was answered. 


My daughters played a great role with their support. My oldest daughter at one point picked up and drove eight hours to take care of me when I had a very intense pain episode. Terry had just about seen enough and you could see a break was a possibility. Kristi came, took over for about five days and Terry got some much need alone time and rest and I reconnected with my wonderful daughter on a whole new level. We even relearned cribbage and had long hours of being together.


No, this time I do feel like a survivor. Could I go through it again, Yes. Unless the prognosis was grim I could do it again. It would not be a cakewalk, but I think I could handle it. Terry could handle it. But, I never want to go through that again. With vigilance from the surgeon and the oncologist perhaps if anything happens it will be caught so early that I won't go through hell on earth.


Thanks to all whole have express words of love and support. I at a good place right now and I intend to stay here for a while.

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.