The reversal will require a hospital stay. I go through the usual pre-op blood work, discussion with a nurse and if I understand the procedure being performed. It goes well. I am anxious to have this procedure as the illeostomy is such an aggravation. The skin erosion hurts and looks like hell, the bag still gives us some problems with coming loose, and the routine is fatiguing.
We show up at 5:30 AM and I go into the pre-op room. The nurses are kind, the nurse anesthesiologist is nice and they remember I do not react well to morphine. Seems like even the surgical people are getting to know me. That is not good. Dr. Jones comes in and we discuss what is to take place and that is is a fairly simple procedure as the small intestine has not actually been cut in half but more butterflied and one section poked up through my side. I'm looking forward to having this over with.
I wake up in the recovery room. Once again everyone is nice. Terry comes in to sit with me and I actually begin to feel quite good. No bag, no bags to replace, a sense of freedom. To think that a few months ago I was praying for the bag to get relief from the inflammation and pain of radiation treatments. It seems so long ago.
In the hospital room I really begin to feel good. The Dr. comes to check on me and says he might even let me go home in the morning if I continue to do so well. This is a Friday. Terry goes home hoping that when I call on Saturday she will come and get me. However, things take a downward turn in the evening. I begin to experience diarrhea and it burns my bottom. I go about every fifteen minutes and do not feel well at all. The nurse comes in and explains that diarrhea is a normal reaction to the reversal surgery and helps as best she can but there isn't much she can do. I am up and down most of the night with very little sleep and a real pain in the ass. The acid in my stomach and small intestine is not moderated by the large intestine and burns the rectal area.
Long about morning is starts to lessen but I do not feel good. Being Saturday the Dr. on call is Jones partner. He takes one look at me and says, "You're not ready to go home today." Damn, but he is right. I hurt and don't feel well. By the time he comes in it is Sunday noon and Terry and I decide that she should stay home and we'll see about Sunday. I spend the entire day alone in the room, TV is a distraction but when you don't feel good just having someone there is better. However. Terry has had enough of sitting in hospital rooms and I do not want her to go through that discomfort.
Sunday, I feel a little better. The diarrhea has stopped and I am eating some semi-soft food. I get some ice cream from the nurse, it feels and tastes good. Terry comes and the day passes without too much discomfort.
Monday comes, I'm ready to go home and I am discharged. Hopefully I will not be back to the hospital for a long while. At home I do not have any BM;s because the system is empty. So I enjoy some days of peace and quiet and recover some strength. Pretty soon at night have I have these long, low sounding farts. They are great. They should be recorded. I guess the material is working its way through the large intestine, and pushing a long tube a gas out. It takes several days before I have a BM and it doesn't hurt to go. It doesn't hurt to go for the first time in about a year and a half. This is wonderful.
I fart, I go to the bathroom, frequently and I encounter no pain. I go back to work, but the stool is very soft and I encounter accidents which necessitates putting the pads back into my underwear. It is a small price to pay for not have a painful BM. However I do run into some problems with control and experience numerous occasion when I am with my friends at work where I have an accident as we are standing talking in the hall. No one knows it, but I can feel it and sometimes it is no small amount. I end up having a change of clothes at work and I feel that if I explain my problem to my co-workers that they will understand my strange coming and goings. They do. I recommend for anyone experiencing this type of problem let you coworkers know, you can describe in terms that are not gross. If they know they understand and have sympathy for your plight. Not that you want sympathy, but they come to take your actions as normal for you and you don't have to suffer the feeling that your coworkers must think you an odd duck.
The condition I experience is chronic diarrhea. The stool is not loose but I go frequently. I go some times as much as 25 times a day. It is a frustrating routine. The accidents I encounter are call incontinence. We associate that with the urinary tract, but it also happens with the digestive tract. I have a prescription drug called Limodal, and I also us Immodium, but I am reluctant to use too much. I'd rather go quite often than plug up.
So long term recovery begins. It is now December and I am back at work full time.
Sunday, November 18, 2012
Sunday, August 12, 2012
Part 5 Time to Reversal
Kristi arrives in the middle of the night and we talk for a while. One thing I can do with my two daughters is talk, we have some great conversations.
I sleep for a while then wake up in pain, and get another shot. It is not too bad, and I get some rest. The morning brings more meds and a Dr. visit, not the regular surgeon but his associate and that is who is on call during the weekend. It is Saturday. Kristi goes out and gets breakfast, I eat hospital fare as they don't want me to take in too much food until they can make a better determination as to the cause of the pain. The surgeon who did the work has already said he does not want to have to go in there now as it is too much of a mess and it might just really complicate matters.
Kristi comes back with some cards and a cribbage board. I have not played cribbage in years. I call Terry, she is rested and in better spirits and we talk about her not coming to the hospital. Kristi is with me and she will be staying until Thursday. So Terry stays home, gets some much needed peace and quiet and can nap when she wants to and I'm not underfoot.
Kris and I while away the day playing cribbage, reminiscing about the days when we played cribbage as a family and traveled to the U.P. of Michigan for vacations. It is easy talking with my daughter and I am much comforted. The pain seems to ease and the time grows between injections. In the afternoon they move me to a pill and everything is better. I still have bouts of pain as the meds wear off but they seem to becoming less frequent.
Sunday comes and the pain is eased quite a bit. Kris and I still seem to find a lot to talk about and we play cribbage, It is the most relaxing time I've had since the start of chemo/radiation. She is a knowledgeable nurse, is constantly critiquing the nursing care at NEA and is frankly impressed with the attention the patients received. Kristi is an RN on a cardio ward in Valparaiso, IN and their nights are so busy they often do not have time to just tend to their wards. NEA nurses seem to make time and have a nice way about them. They instill confidence that things are going OK.
Finally Monday morning, the Dr. comes in, a urologist and they decide they cannot pin point the source of the pain and seeing it has gotten much less intense I am released to go home.
Home, home, home. You just do not know how good that sounds when you are not feeling good. There is my wife, my dogs, my bed, my stuff and Nurse Kissy. That name comes from her nieces and my grandchildren. My other daughter Jenny's children.
So a pleasant week begins with the attentions of my own personal RN and my wife sharing the burden of care instead of carrying it alone. Kristi does not like the process of changing the bag, at one point she comments, "God, Dad, that is your intestine sticking out." She looks a little white around the gills. Terry and I smile, Terry has learned to tolerate the little devil.
However, all good things must come to an end and Kristi returns home and I miss her terribly. The load is now on Terry, but I am feeling better.
After a bit I go back to work for a while. I still do not like the rustle of the plastic bag under my clothing. I still have leakers, and Terry is much better at replacing the bag than I am. When I stand my tummy has too much of a bulge, lying down the skin lies flatter and is easier to work with.
I am still suffering skin erosion from the acidic output. It really burns some times and even may bleed a little. No one seems to have a solution. We go back to the Wound Clinic for follow up on the butt wound which is now completely healed. Still the nurses aren't able to make any great headway on appliance attachment. I now start looking forward to the "reversal" surgery in October as the skin irritation is sometimes quite annoying.
The one thing I am grateful for is I have no bowel issues with the illeostomy. The bag is one thing, but I empty it when I want, I do not have an urge to go to the bathroom, I have no pain in the anal area, no inflammation, and am at ease for the first time in four years. I am having should I keep it, should I reverse it talks with myself, but I lean more and more toward reversal as time goes by.
Days run together. I am working much of the time and still having bag problems. However Terry and I seem to have grown at ease with the issues and while neither of us like it we handle it. Terry has become quite good at handling bag replacement and has developed a method that is most reliable even though I still encounter leakage. It seems as if the stool erodes away the adhesive and will literally tunnel an escape route. When we remove the appliance we can follow the track of the leak.
Nothing we do seems to make much difference although once an a while we get one that stays for the full three days. Emptying the bag is my job. It opens and empties through an tunnel into the commode. I use a spray to flush it and rinse it out then reseal it with some clamps. It works until I forget to apply the clamp and then I am the creator of the leak. The initial odor upon releasing the content is quite over powering at times. It is job best done in private and by yourself as it is the nastiest part of the illeostomy. However neither Terry or I notice odors when the bag is sealed and works correctly. Like I said earlier, not having to go to the bathroom with the same frequency I did before surgery is a relief. At least I feel almost human when I'm out and about.
Other than the skin erosion and the cleaning of the bag four or five times a day time passes and I am quite comfortable. October approaches and the date for the illeostomy reversal is soon at hand.
End of part 5
I sleep for a while then wake up in pain, and get another shot. It is not too bad, and I get some rest. The morning brings more meds and a Dr. visit, not the regular surgeon but his associate and that is who is on call during the weekend. It is Saturday. Kristi goes out and gets breakfast, I eat hospital fare as they don't want me to take in too much food until they can make a better determination as to the cause of the pain. The surgeon who did the work has already said he does not want to have to go in there now as it is too much of a mess and it might just really complicate matters.
Kristi comes back with some cards and a cribbage board. I have not played cribbage in years. I call Terry, she is rested and in better spirits and we talk about her not coming to the hospital. Kristi is with me and she will be staying until Thursday. So Terry stays home, gets some much needed peace and quiet and can nap when she wants to and I'm not underfoot.
Kris and I while away the day playing cribbage, reminiscing about the days when we played cribbage as a family and traveled to the U.P. of Michigan for vacations. It is easy talking with my daughter and I am much comforted. The pain seems to ease and the time grows between injections. In the afternoon they move me to a pill and everything is better. I still have bouts of pain as the meds wear off but they seem to becoming less frequent.
Sunday comes and the pain is eased quite a bit. Kris and I still seem to find a lot to talk about and we play cribbage, It is the most relaxing time I've had since the start of chemo/radiation. She is a knowledgeable nurse, is constantly critiquing the nursing care at NEA and is frankly impressed with the attention the patients received. Kristi is an RN on a cardio ward in Valparaiso, IN and their nights are so busy they often do not have time to just tend to their wards. NEA nurses seem to make time and have a nice way about them. They instill confidence that things are going OK.
Finally Monday morning, the Dr. comes in, a urologist and they decide they cannot pin point the source of the pain and seeing it has gotten much less intense I am released to go home.
Home, home, home. You just do not know how good that sounds when you are not feeling good. There is my wife, my dogs, my bed, my stuff and Nurse Kissy. That name comes from her nieces and my grandchildren. My other daughter Jenny's children.
So a pleasant week begins with the attentions of my own personal RN and my wife sharing the burden of care instead of carrying it alone. Kristi does not like the process of changing the bag, at one point she comments, "God, Dad, that is your intestine sticking out." She looks a little white around the gills. Terry and I smile, Terry has learned to tolerate the little devil.
However, all good things must come to an end and Kristi returns home and I miss her terribly. The load is now on Terry, but I am feeling better.
After a bit I go back to work for a while. I still do not like the rustle of the plastic bag under my clothing. I still have leakers, and Terry is much better at replacing the bag than I am. When I stand my tummy has too much of a bulge, lying down the skin lies flatter and is easier to work with.
I am still suffering skin erosion from the acidic output. It really burns some times and even may bleed a little. No one seems to have a solution. We go back to the Wound Clinic for follow up on the butt wound which is now completely healed. Still the nurses aren't able to make any great headway on appliance attachment. I now start looking forward to the "reversal" surgery in October as the skin irritation is sometimes quite annoying.
The one thing I am grateful for is I have no bowel issues with the illeostomy. The bag is one thing, but I empty it when I want, I do not have an urge to go to the bathroom, I have no pain in the anal area, no inflammation, and am at ease for the first time in four years. I am having should I keep it, should I reverse it talks with myself, but I lean more and more toward reversal as time goes by.
Days run together. I am working much of the time and still having bag problems. However Terry and I seem to have grown at ease with the issues and while neither of us like it we handle it. Terry has become quite good at handling bag replacement and has developed a method that is most reliable even though I still encounter leakage. It seems as if the stool erodes away the adhesive and will literally tunnel an escape route. When we remove the appliance we can follow the track of the leak.
Nothing we do seems to make much difference although once an a while we get one that stays for the full three days. Emptying the bag is my job. It opens and empties through an tunnel into the commode. I use a spray to flush it and rinse it out then reseal it with some clamps. It works until I forget to apply the clamp and then I am the creator of the leak. The initial odor upon releasing the content is quite over powering at times. It is job best done in private and by yourself as it is the nastiest part of the illeostomy. However neither Terry or I notice odors when the bag is sealed and works correctly. Like I said earlier, not having to go to the bathroom with the same frequency I did before surgery is a relief. At least I feel almost human when I'm out and about.
Other than the skin erosion and the cleaning of the bag four or five times a day time passes and I am quite comfortable. October approaches and the date for the illeostomy reversal is soon at hand.
End of part 5
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.
Saturday, August 11, 2012
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.
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.
Thursday, August 9, 2012
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.
Wednesday, August 8, 2012
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.
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.
Sunday, August 5, 2012
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.
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.
Sunday, June 10, 2012
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.
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.
Sunday, April 1, 2012
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.
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.
Sunday, March 11, 2012
Current Happenings 3-11-12
A week ago I woke up early Sunday morning having to go to the bathroom. I then started a parade back and forth for almost 10 hours. At first I went rather normally, just often, pretty soon I did not feel too well, my stomach was cramping slightly and I would feel weak. About 11 AM, I thought I may be getting dehydrated so I downed a glass of cool water, went upstairs and promptly threw it up. Then the output changed to a watery liquid and was just like a colonoscopy prep. The diarrhea stopped early afternoon but I felt weak, achy and lethargic. I came to realize Sunday evening it was probably a bug.
I had started my third week of chemo on Saturday and had stopped Sunday when I was going to the bathroom an abnormal number of times. By Monday morning I felt pretty good so I restarted my chemo. However, Monday afternoon at work was not good. After lunch I began going, and one of the problems I encountered was loss of control. I ended of staining my pants and having to change underwear. I had no change of clothing. I was finishing up a budget proposal so I had to stay and get it done. I went home, ate some dinner and later that evening the frequent trips to the bathroom began again. with very loose stools.
Tuesday was quiet, but I was empty.
Wednesday the same until night. I experienced frequent trips and had to wear briefs with a pad to bed to prevent accidents. Immodium seemed to slow the tide but my stomach felt bloated and I had a lot of gas. I also couldn't control the gas and had several embarrassing events in front of colleagues.
Thursday was peaceful until night came and then a real strong repeat of previous frequent trips and loose stools.
Friday I called the oncologist and spoke to the nurse. Friday was a very peaceful day. I was told to stop the chemo and not begin again until I had seen the Dr. which will happen in a couple of weeks. Yesterday was pretty good and I slept peacefully last night. This morning I can feel some pressure in my abdomen which I take to mean I am filling up. This afternoon I have gone several times and it is very soft, but the stool if formed which is a good sign. Perhaps with the chemo stopped for now I will go back to my previous way which though often was comfortable.
I had started my third week of chemo on Saturday and had stopped Sunday when I was going to the bathroom an abnormal number of times. By Monday morning I felt pretty good so I restarted my chemo. However, Monday afternoon at work was not good. After lunch I began going, and one of the problems I encountered was loss of control. I ended of staining my pants and having to change underwear. I had no change of clothing. I was finishing up a budget proposal so I had to stay and get it done. I went home, ate some dinner and later that evening the frequent trips to the bathroom began again. with very loose stools.
Tuesday was quiet, but I was empty.
Wednesday the same until night. I experienced frequent trips and had to wear briefs with a pad to bed to prevent accidents. Immodium seemed to slow the tide but my stomach felt bloated and I had a lot of gas. I also couldn't control the gas and had several embarrassing events in front of colleagues.
Thursday was peaceful until night came and then a real strong repeat of previous frequent trips and loose stools.
Friday I called the oncologist and spoke to the nurse. Friday was a very peaceful day. I was told to stop the chemo and not begin again until I had seen the Dr. which will happen in a couple of weeks. Yesterday was pretty good and I slept peacefully last night. This morning I can feel some pressure in my abdomen which I take to mean I am filling up. This afternoon I have gone several times and it is very soft, but the stool if formed which is a good sign. Perhaps with the chemo stopped for now I will go back to my previous way which though often was comfortable.
Saturday, February 11, 2012
First week of maintenance chemo
I just finished my first week of maintenance chemo. I am taking a drug called Xeloda, pronounce Zeloda. It is in pill form and I take eight pills a day, four in the morning and four at night. The body converts the drug to 5FU which is a standard drug used in the treatment of colon cancer. The oncologist wanted to add another drug to the regime but the insurance company would not pay for it and I did not qualify for help from the drug company. So I guess from one standpoint I am received a less than recommended treatment, but then the cancer recurred in the same sight at the previous surgery so if it is there this drug ought to do it.
The side effects are numerous and range from diarrhea, constipation, fatigue, aching bones, to sores in the mouth. So far I have experienced none. I take the drug for one week then stop for a week. I do have some Dr. visits in the meantime to measure my blood count as these drugs can lower you immune system.
I still feel very good. I have frequent bowel movements, maybe 10+ a day, but there is no pain or inflammation.. I do not bleed and am for the most part comfortable. The consistency of the stool is like a heavy glue which makes cleaning tedious and uses a lot of toilet paper. However, it is a long way from what is was a year ago, a long way and I am grateful. Life is good right now.
The side effects are numerous and range from diarrhea, constipation, fatigue, aching bones, to sores in the mouth. So far I have experienced none. I take the drug for one week then stop for a week. I do have some Dr. visits in the meantime to measure my blood count as these drugs can lower you immune system.
I still feel very good. I have frequent bowel movements, maybe 10+ a day, but there is no pain or inflammation.. I do not bleed and am for the most part comfortable. The consistency of the stool is like a heavy glue which makes cleaning tedious and uses a lot of toilet paper. However, it is a long way from what is was a year ago, a long way and I am grateful. Life is good right now.
Saturday, February 4, 2012
Maintenance
Today, February 4 I began my chemo maintenance. It has been a long road. I had major surgery five months ago after enduring almost two months of radiation and chemo therapy at the same time. I have detailed the effects of that and will do so no more. In October I went through a reversal surgery to reattach my small intestine to the large intestine. I work a iliostomy bag for over ten weeks. That in itself was an adventure.
The reversal surgery was good, I recovered swiftly and feel as good as I've felt in years.
The oncologist recommended I have follow up chemo to kill any guerrillas. At first the insurance company refused to pay for it saying it was not necessary and that chemo maintenance for recurring colorectal cancer is experimental. Then the oncologist had his financial person contact the drug companies to see if they would donate the medicine. I was to take two types of drug, oxyplatin and Xeloda. One of the most often used drugs in fighting my type of colon cancer, which is a basal cell or Sauamous cell, a drug called 5 FU. It was the drug used in my initial round of chemo because it works in conjunction with radiation to make the radiation more deadly. It also is used in treatment of metastasized colorectal cancer. So that was one drug. The other drug is used when the cancer has spread and if more effective for that type. There is no indication that the cancer has spread anywhere, however, it did recur when I was pronounced "cured." I did not qualify for the second drug. So I am taking only Xeloda.
I take four 500mg tablets twice a day Today, day 1 I have no effects that I can tell. The side effects are numerous but the Dr. told me this drug is well tolerated so I hope things will go OK.
The reversal surgery was good, I recovered swiftly and feel as good as I've felt in years.
The oncologist recommended I have follow up chemo to kill any guerrillas. At first the insurance company refused to pay for it saying it was not necessary and that chemo maintenance for recurring colorectal cancer is experimental. Then the oncologist had his financial person contact the drug companies to see if they would donate the medicine. I was to take two types of drug, oxyplatin and Xeloda. One of the most often used drugs in fighting my type of colon cancer, which is a basal cell or Sauamous cell, a drug called 5 FU. It was the drug used in my initial round of chemo because it works in conjunction with radiation to make the radiation more deadly. It also is used in treatment of metastasized colorectal cancer. So that was one drug. The other drug is used when the cancer has spread and if more effective for that type. There is no indication that the cancer has spread anywhere, however, it did recur when I was pronounced "cured." I did not qualify for the second drug. So I am taking only Xeloda.
I take four 500mg tablets twice a day Today, day 1 I have no effects that I can tell. The side effects are numerous but the Dr. told me this drug is well tolerated so I hope things will go OK.
Sunday, January 22, 2012
Three months since reversal
Tuesday the 24th I am going in to the hospital for a sigmoidoscopy. It is a look at the first 12 inches of your colon. The surgeon wants to see how the anastomosis looks and if there is any recurrence of cancer. He said he does not expect to find anything but if there is something this he can just burn if off so I don't have to go through chemo/radiation again. I don't expect anything either. I am feeling fine, I have no pain, no uncomfortable sensation when I have a BM, no bleeding, just pure comfort. I do vary between stools that are easy to pass with little cleaning issues and gluey stools that have cleaning issues, but aside from the aggravation it is no problem.
I cannot tell you how much I enjoy going shopping with my wife and not having to search for a bathroom every fifteen or twenty minutes. We get to enjoy dinners out without me being absent holed up in the bathroom experiencing cramps, pain and discomfort. Life is good.
I still have not begun the chemo maintenance program and wonder if I will. According to the medical community that regime is not necessary, however according to my doctors they believe it was be a good thing to do. We are still at a standoff about who pays. The insurance company refuses. I have applied to the drug companies for their help but have not heard back yet. I am a little concerned but not too.
I hope everyone who has a bowel resection has the success that I am enjoying. This is the best I have felt in years.
I cannot tell you how much I enjoy going shopping with my wife and not having to search for a bathroom every fifteen or twenty minutes. We get to enjoy dinners out without me being absent holed up in the bathroom experiencing cramps, pain and discomfort. Life is good.
I still have not begun the chemo maintenance program and wonder if I will. According to the medical community that regime is not necessary, however according to my doctors they believe it was be a good thing to do. We are still at a standoff about who pays. The insurance company refuses. I have applied to the drug companies for their help but have not heard back yet. I am a little concerned but not too.
I hope everyone who has a bowel resection has the success that I am enjoying. This is the best I have felt in years.
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