Done with Chemo

I am done with chemo for the time being. I have already discussed with the oncologist that I will have some follow up chemo after surgery, but last time I had it the effect was pretty mild.

I have had six rounds of chemo, every two weeks, so three months of feeling off, fatigued, lethargic and having a mildly upset stomach will be done. I have to be off chemo for six weeks before I can have surgery. I have an appointment with the specialist in Little Rock on December 15, 2014 and I will sign a consent form then that is good for 30 days. That means that surgery will take place after the first of the year and must be before the 15th.

I'll look forward to feeling well for the 2014 Christmas.

Chemo: Round Six

I am becoming an old hand at this. The oncologist and I had a discussion because I want to end the chemo, he argue for it as we had agreed to six rounds, and I have completed five. In addition I realized this is a short week and I won't get in to see the specialist this week, however the week after Thanksgiving would be fine. It would also be the second week after chemo and later in the week I start to recover. So I went for Round 6.

However, there is a drug they give that helps with anti-nausea and is a strong steroid. The effect is I feel good for about three days. Thursday, Day 4 is when the effect wears off and I feel very tired, little stamina and my stomach is mildly upset, this lasts for about a week, then slowly lifts.

So tonight I am up late as I cannot go to sleep. The drug makes me feel good, I am hungry and have enjoyed half a left over Turkey sandwich from our early Thanksgiving bird, and may even enjoy a second. My mind is alert and I simply do not feel tired. I lay on the bed and listened to a number of Leon Redbone tracks then read his biography on Wikipedia. I read the news, looked up Monday night football and checked the weather. I turned the light out, rolled over and was wide awake. I'm downstairs at the computer taking advantage of the energy.

That is what my chemo is like, and has been through all 5 rounds. However, the Dr. did lower the dosage by 15% on the two remaining drugs I take so hopefully the side effects won't be as severe this time, nor last as long.

Observations from my hospital stay

I have already written about the large bowel partial blockage I experienced in late October. I hope no one has to go through that. This short blog concerns the care I received while under the care of the hospital.

The hospital just opened in November 2013. It represents over $500,000,000 investment in our area and is a state of art hospital when it comes to technology. The hospital also recently received some accredation that puts in on the same footing as MD Anderson and Mayo's for level of care. It is a gem.

I went in through ER and did not experience the painful slow intake process usually associated with the ER. Within less than half and hour I had been triaged, had an x-ray that determined I had a partial lower bowel blockage and waited on transport to a regular room

Within a half an hour I was in a room and nurses were attending to me. Several times during the admission to the hospital the "hospitalist" came in and check. Now I was have violent cramps and pain all this time but no pain meds were prescribed until a Dr. had determined the final diagnosis and settled on a course of treatment. That is frustrating and kind of scary, but I can understand how necessary it is. I've been through that several times before.

The next 6 days were spent in pain, uncontrolable bowel movements, and boredom. The nurses were efficient, compassionate, and very efficient. I was truly impressed at their work ethic and care they exhibited for their patient. Everyone was part of the team and pitched in to perform whatever task was needed to be performed, from cleaning up the messes I made to administering medications. Nothing was too low or to unimportant.

I met a Dr. in the hospital who had been a general surgeon but didn't make the change with new surgery procedures and became a hospitalist. He was straightforward and honest and I appreciated it. He gave me advice and told me things that perhaps a Dr. wouldn't. I did appreciate the input.

All in all the experience, under the circumstances, was good. Just wish I didn't have to go back, but this one will be at the University of Arkansas School of Medicine in Little Rock so we shall see what comes of that.

Partial Lower Bowel Obstruction

I had my 4th Round of Chemo on October 20th. I enjoyed my usual two to three days of feeling good from one of the pre-meds they give me prior to chemo. However about Thursday I started having trouble going to the bath room and starting have fairly intense cramps. This worsened throughout the weekend until my belly was distended and I was encountering quite severe pain. I had no appetite and really did not eat much at all. I did try to eat and forced myself, but the minute food touch my stomach I would start these intense, hard cramps.

Finally Tuesday, Oct 28 I told my wife I couldn't take it any more and we needed to go to the ER. I was admitted that morning with a partial lower bowel obstruction. While I was relieved that an NG tube would not be of much help, I then learned the treatment is no food or water, nothing until it worked its way out. I went four days with nothing to eat or nothing to drink. One of the drugs in my chemo regime is Oxyplatin, which causes and intense reaction to cold. So even when I was able to suck on the ice chips I couldn't. I could not stand the reaction to cold.

I started to pass gas along about Thursday, heavy rumbling sounds that were almost as painful as relief. Finally Saturday, Nov. 1 I was put on a clear liquid diet. This meant juice, broth, water, etc. However my taste was all balled up and not much tasted good so I was getting much of my fluids through an IV.

In the meantime on Friday a x-ray revealed a pneumonia. That started an intense round of anti-biotics. Now my bowels have very little going on because of the blockage and then they come along with Round-Up and kill all the bacteria.

My stool looks like sludge, it is uncontrollable and comes frequently. Nurses are having to change my bed several times a shift, I am soiling myself several times and hour and wearing these hospital briefs to contain the output. Its a hell of a mess. I am not feeling any better and my wife is helping as much as she can, which is a lot.

By now, after four days we've established a good repartee with the staff and nurses. I don't know how they can work in the situation I offered them but they seem very professional and take it like just part of what goes on. In the meantime my modesty and embarrassment have fled like a fart in a windstorm.

I start feeling a little better on Saturday evening and Sunday but still I go and go. A Dr. comes in and says he believed if I kept pooping and passing gas and eating I could go home Monday. By Sunday it seemed like I was having a reversal, not in the blockage, but I just started to feel worse and worse.

Monday comes and the Dr.'s nurse comes in to check up and I tell her about feeling worse. She says it is a well known fact that if you stay in a hospital too long it will make you sick. Long story short, I was released on Monday and went home. I felt sick and weak and tired. However, I am getting better, In fact, I'd say I feel about as good as I have in a month. You see chemo colors all. I have know sense of blockage, but chemo just makes you tired, worn out and lethargic. That is where I'm at now having spent six days in the hospital and 8 days out. I'd call that about normal.

Next week a couple of tests, a PET Scan and an MRI with Contrast, then an evaluation of the situation by the Dr. in Little Rock and hopefully surgery in Mid-December. At least that is my hope, we shall see what the outcome will be.

Week 4 1/2 of 6 Chemo treatments

More than half way through the six chemo treatments. Supposedly, according to the Dr., people tolerate this type of chemo quite well. I am not one of those. Oh, at first it wasn't too bad, and I kind of fooled myself into thinking perhaps this won't be bad and I'll be able to work around the house and get a few things done.

I did wonder if as time went on the side effects would accumulate, and apparently some of them do. I had chemo on a Monday, six days ago. Chemo consists of two drugs administered via IV in the Infusion Lab. The third drug is administered via a pump I wear over 46 hours and is removed usually about Wednesday noon. The first few days I feel quite well, however that is due to a couple of anti-nausea drugs that contain a "feel good" component. That wears about about Thursday after being administered Monday.

It is all down hill from there. I did encounter a gagging sensation and in fact coughed up some phlegm a few times. I also had a soreness in my throat and a little acid reflux during the night time. I explained that to am NPA and she told me to take some Mucinex and Prilosec and that seems to have been pretty effective. However, I feel constantly ill at ease in my stomach and I am encountering abdominal cramps that are fairly painful. Early on when I would encounter these cramps I'd pass some stool which resulted in me having to change pads often and clean myself up. Last night I encountered cramps but passed no stool and no gas and got worried I was encountering a colon blockage. I don't think so as I've now passed some gas and a little stool, but I frequently encounter these cramps and they can make me catch my breath.

Food does not taste good and the smell of food cooking is almost nauseating. I am losing some weight because I just can't eat much. That effect has occurred in past weeks, and by the end of the second week after chemo my appetite has returned and I am able to put that weight back on. Last chemo round however, the cramps lasted up to the end of the two weeks and I ended up losing about 4 pounds. I'll see what happens this week.

Round 5 of chemo coming up they are going to drop the drug Avastin. It slows healing and has to be discontinued 6 weeks before surgery. I think that is the drug that causes me some constipation and cramping, I hope. We will be discontinuing the drug a week from Monday in preparation for early December surgery.

My dauber is down, but I'm not out of the race that's for sure. I'll keep you informed.

Third Chemo Treatment

I am fighting a second recurrence of my colo-rectal cancer. The first diagnosis was in 2007, the first recurrence in 2011 and the second this past August 2014. The recurrence is a small mass located right next to the incision site of the first and second surgeries. It apparently has been found early enough that it is going any place. However, I am undergoing chemo for a period of time will we determine the best course of treatment. I had my third chemo session Monday, Oct 6, 2014. I take three drugs, Oxaliplatin, Avastin and Folfox. The Folfox I take over a 48 hour period via a portable pump I carry and it comes off around Wednesday noon.

The first couple of days I don't feel too bad. In fact until the Folfox kicks in that I really start to go down hill. My stomach feels slightly upset, I am tired, just kind of worn out and don't feel good. Foods I normally enjoy begin to taste odd, in some cases down right bad.

Time takes care of it, I rest, eat realizing that as my appetite diminishes I'll lose some weight. Frankly that isn't all bad, but my energy level is very low and I don't have much ambition to do much.

I do have a sensitivity to cold that shows up in my fingers and mouth area. I have to drink tap water and be careful getting chilled foods out of the freezer or refrigerator. I seem to encounter more frequent esophageal spasms, in some cases if I am taking some pills I may even throw up, but it is just what is in my esophagus. My gag reflex seems very sensitive, I gag easily while brushing my teeth. I have not encountered mouth sores, but do have a rash around my knees and shins.

About a week after treatment I start to come out of the funk. In fact, by the weekend before I go in for more chemo I feel darn good. Right now this is my life and I'll get through this. The outlook isn't too bad, I should have surgery in Little Rock at the University of Arkansas Medical School this fall. I will end up with a colostomy, permanent, but given the aggravation I've gone through the last seven years it will probably be a relief.

And so it goes

Well a 2nd recurrence. The prognosis for success is dropping. I do not know to what level, and I don't care to ask. The colo-rectal tumor has reappeared right next to the part of the colon the previous two surgeries occurred. It is small, 2.5 X 3.5 cm, about the size of half of my small finger nail. It has not spread, but seems to be contained.

It is in an area that does not lend itself well to further traditional surgery. There is so much scar tissue from the radiation and previous surgeries that the doctors feel a heightened risk of creating a fatal bleed if they go in there again.

Right now I am taking further chemo to reduce the size of the tumor and buy us time to search for alternative. There are several. There is a new technology called nano-knife that uses small electrodes implanted in the tumor to collapse and destroy the cells which are then reabsorbed by the body. However, it is new technology and doesn't have much history.

I am to meet with a cancer surgeon in Little Rock sometime soon, I hope. He also expressed concern over the surgery, but is willing to talk with me. What I want to really explore is what is possible and what the efficacy is? It is a small tumor. I've had two unsuccessful surgeries and would like it clean up so I can get on with a cancer free life for some years.

I originally would like to have beaten my dad's life span of 94 years. I've shortened that. Ten more years would be great so I could experience the wonders and enjoyment of retirement and living with my lovely wife Terry. I'd also get to see my grandchildren grow. That is very important to me.

In the meantime am trying to take one day at a time. I do find my mind wondering if I'll be here next year, or the next year. I worry about that, but I am adjusting and just trying to enjoy the work I have to do today, the sun and the breeze and the afternoon pleasantries with my lovely wife. So goes this life.

What I have learned about Fecal Incontinence.

Well, I have written about my side effects of a shortened colon, I go to the bathroom quite often. I don't count anymore, but I will say that the average is probably ten times a day. Some days I have peace for several days, then some days I have all kinds of problems.

Let me try and give those who struggle with frequent BM's some of the things I have learned:

1. I wear pads all of the time. I used to think I could anticipate a BM, or that if I could just find the right kind of diet I would go less frequently and have more control. I cannot seem to find the right diet, mainly because it has not become a top priority for me. I react fine to bacon and eggs, but sometimes ham upsets the apple cart. I have not been able to pin a diet on reduced BM's.
2. I experience some days of peace, no BM's and I don't worry about it. I take Immodium to try and slow the digestive tract down, but quite frankly when I first take Immodium my system seems to respond by trying to eliminate as much waste as possible, then a few hours later it settles down.
3. Lying down seems to enhance the movement of stool through the system. I cannot tell you how many times I want to just lay down in bed, relax, play a solitaire game or three and go to sleep. Not to be, I'll get up between two and four times every fifteen minutes or so to go pass a small stool. Plus because I experience fecal incontinence I sometimes won't feel the passage and find I have soiled my pad which necessitates clean up and a new pad. It can be very frustrating.
4. Tips:
1. I am switching to pads that are called overnight pads, they have a longer tail piece and offer more protection. They are the same price as other pads, $12.58 at Sam's Club for a box of 76.
2. I am moving away from adults wipes to flushable wipes. All of a sudden there seems to be a lot to choose from and flushable wipes mean I'm not trying to disguise a large wad of dirty wipe and make it to the waste basket before everyone spots me in a public restroom.
3. I carry a "fanny pack" with a package of flushable wipes and about four pads when my wife and I go out shopping or out for an evening.
4. I no longer am self-conscious about putting a roll of used pads in the trash in a public restroom. You can use the new pad's plastic wrap to roll the soiled pad in and it usually has some type of adhesive strip to prevent the pad from unrolling. 
5. Traveling is an adventure. I recently went to Chicago and the trip up and the day or two we spent were fine. However I made the mistake of over indulging in chocolate and on the way home it was frequent stops, clean ups and replace pads. It is uncomfortable and humiliating, although I have learned to disguise my problem very well.
6. Frankly, unless you have good control over you BM's I do not recommend travel unless necessary. The unexpected always happens and sometimes its good, but sometimes it is just down right trouble. 

That's it for now friends. I hope you find some help in what I've written. Take care and do the best you can.

Colonoscopy: More information

I completed my routine colonoscopy yesterday, the results were good.

I learned more about the procedure yesterday and thought I'd share that in case someone else was as confused by the description as I was.

The prep directions call for you to take some form of liquid or pills to stimulate your bowls to void the colon of everything. You have to fast for a day so you aren't adding to the task. I think that process is completely understood.

What confused me was the term "clear." The term clear is used in describing the output from your colon as you use the laxative cleansers. To me clear means water clear, I mean that you can see through, like from a tap. Not so. clear to the medical community means tan, light brown but free from suspended solids, water like. Well now that I have a better understanding I should be able in the future to better control the outcome of my part of the process.

Yesterday my output was like water, but it was dark brown in color and I could see what I would call suspended solids in the fluid. However it was running close to the time of the procedure and I was afraid to take anymore because my system gets unhappy with the laxative and will extend the time immeasurably. As a result the GI Guy rated my prep as poor. He knows what I've gone through and he went ahead an back flushed a lot and took longer than normal to get a good look. He was able to see all the way to the cecum and everything was normal. He did take a biopsy of the anastomosis (surgery resection joint) just to be sure because that is where the tumor recurred two and half years ago. I was grateful for his time and his attention to detail.

In the future however, I shall begin earlier so the night before I can take the third dose. The normal procedure calls for two doses, but I don't tolerate the bulk of material I have to ingest and get violently sick to my stomach. By reducing the dose but extending the time I made it without any ill effects but did not really get a good prep. Next time I'll have a plan for better carrying off my part of the procedure.

Colonoscopy Prep

Today, February 24, 2014 is a prep day for a colonoscopy scheduled for tomorrow. I have been unsuccessful the last three times in getting a good prep. It is really frustrating. I tried back in August 2013. I got sick trying to consume the large amount of laxative and as a result did not get a thorough prep. When the GI Guy did the procedure he had to shorten it to a flex sig because there was too much fecal material above the surgical joint for him to continue. So, I rescheduled for October. This time I tried Miralax. I had to consume two bottles over the period of a day and drink copious amounts of water. I got so sick I couldn't stand it. I called and cancelled the appointment, I experienced explosive diarrhea and couldn't eat for three days I felt so bad. No more Miralax for me, regardless of what MD Anderson says.

Finally I rescheduled for tomorrow. This time I talked to the Dr.'s nurse and she gave me a sample of a prep I'd read about where the volume of fluid you have to take is reduced and you do it once the day before, then again about 4 hours before the procedure. I altered the process. I actually began on Sunday, two days before. The reason is I have experienced explosive diarrhea from time to time and it is uncontrollable. So I took a bottle of Magnesium Citrate on Sunday about 3 PM. I took one half, waited an hour and then consumed the remaining amount. I drank some water, but not as much as I should have. Bulk seems to make me sick. About 7 PM it started to work and it was about 3 AM before I was able to get much sleep. I did experience explosive diarrhea but I was prepared, I had purchased disposable adult diapers, I had adult wipes at each commode and my mind set was to weather the storm. I never got sick although I did experience some fairly severe abdominal cramps. I even got a warning system worked out, when my intestines would rumble big time, I'd best get up and get to the commode because something was going to happen. As a result I did go a lot, the explosive diarrhea stopped around three in the morning and I feel fine today.

My plan today is to follow the directions on the prep I have. It requires I drink 16oz of the prep followed by two 16 oz containers of water over the intervening hour. I'll do that this afternoon so if I end up with explosive results again I have time to let it run its course. I don't think I'll have the explosive action as I went a lot yesterday, so I'm hoping this will just be a final clean out. Depending on what goes on this afternoon I'll probably skip the early morning prep. Once clean, I should stay clean. Besides, I don't want to be experiencing cramping while the Dr. is trying to run the test.

I'm feeling pretty good about this. I'm comfortable, I had a plan, I handled the mess and my wife did not have to help me.