I'm pretty sure it was Wednesday, six days after my surgery, that I was truly me again. It's like I'd been completely out then in some kind of limbo, or maybe dreaming, or maybe some alternate reality. But by Wednesday, after the excess fluid was all gone and my improved breathing had re-oxygenated me, I was clearly clearer.
I don't know how much I was up and moving before, but as of Wednesday, I was up walking and made several rounds on the whole 5th floor, two or three circuits at a time, two or three times a day. It was a dog and pony show since I was still wired up to the IV 'cart' which is really just one of those stands on wheels with a control box in the middle and a bunch of bags and tubing hanging off the top that were ultimately threaded to me.
I did the double gown thing for modesty. Had one on properly, which of course could flap open in the back, but then I put another on over it, backwards, to make a sort of jacket or housecoat. It was loverly, I assure you. The good part of my attire though were my slippers. My parents had brought me a pair of beautiful purple (my favorite color) slippers that looked much like ballet slippers but they had a good textured sole on them so they would defy their name and keep me from slipping.
I waved or tossed a greeting or even a joke as I passed the nurses' stations on my walking rounds. There were three stations. Though only the one near my room had charge of me, the staff moved around so I eventually became familiar with, and to, nearly all the staff. They were always friendly and encouraging, noting my improvement and cheering me on. Later, after I'd been discharged, I wrote a letter to the management of the hospital and praised their staff on the 5th floor. I hope the kudos got back to them.
Anyway, by Friday, I was getting antsy to get out of there. I felt great. My turn around seemed sudden but it was quite complete. Even my surgeon was tentatively ready to release me as early as Saturday, if not, then Sunday.
But then, the delay happened. Suddenly late Friday afternoon, I got a fever and chills. I don't mean a mild case of chills. I mean uncontrollable, body-wracking chills. I shivered all over, my teeth were chattering. I couldn't have felt colder if I was outside in Alaska naked. I had my folks help pile on the blankets and it didn't help. I was still freezing.
We called in a nurse and tried to figure out what was going on. My temperature had suddenly jumped from normal to about 104. The weird thing is, I was lucid and all. I mean I thought that if you had a temperature that high your brain would be sizzling or would shutdown.
Naturally I was given something or other to break the fever asap and it worked, so then I sweat buckets and threw off all the blankets.
Tests were ordered and processed. My surgeon and the nurses tried to find out just exactly what was happening. While that was going on, the whole fever/chill scenario repeated a few times. And somewhere in that, I developed sores in my mouth which hurt and made everything taste terrible. When children get it, I think they call it thrush. I didn't care what it was called, but it was a miserable condition.
Wednesday, December 13, 2006
Sunday, December 10, 2006
Post-Surgical Recovery - part 1
I was, as noted, in a regular hospital room and still on a lot of pain medication but I was coming around more often. I still had trouble breathing. I finally had the ability to inform the nurses and such that my breathing trouble was from feeling my lungs were crowded. At some point this was determined to be fluid built up, likely in my gastric system. I was perhaps not eliminating fluid fast enough despite the frequent emptying of my ostomy pouch which to me seemed perpetually full.
Late in the evening on the 4th day, I think, I began to heave and it was all fluid. I guess I had really backed up at that point. I wasn't taking in food, just drinking water, eating the occasional popsicle, and getting my nourishment from my IV. My vomiting got pretty fierce before everyone started postulating on what could be done. The solution was presented to me, an NG (nasogastric) tube. They'd run a tube into my nose and down through my esophagus into my stomach. The tube could then convey the fluid up and out into a container. I had heard of that before and at those times I thought what a horrid arrangement that seemed to be, terribly uncomfortable to install and 'wear'. However, at this time, as I could barely catch my breath and the contents of my digestive system were overflowing as vomit, I was game. I asked them to please proceed.
What a relief! Very soon I felt less and less like a water balloon. I could actually take deeper and deeper breaths. All of me was happier about more oxygen and less bloating. I was still eliminating a lot of fluid through my small intestine into the pouch too. So, draining in both directions created a remedy and more comfort very quickly. It made a huge difference in my alertness and in my entire sense of well-being.
I think maybe it was as soon as the next day, perhaps a full 24 hours, that the volume of fluid coming through the NG tube began to subside and it could be removed. That was quite a weird feeling and considerably uncomfortable but quick. I was certainly relieved to have the tube out of my nose; it had begun to irritate me. That was another sign of my recovery. I was regaining sensations, feeling more myself, although thankfully I was still receiving sufficient medications such that I was in no real pain. Any pains I had related more to maneuvering in the hospital bed or getting in and out of it as I started to empty my own pouch, having been instructed in the care and maintenance of it as soon as my thought processes were working again.
Time in the hospital was seriously warped. Although I had a great bank of windows and a nice view of the town from the 5th floor, the medications and a lot of napping made it hard for me to keep track of the days and even the hours. Everything seemed to be a schedule of techs taking vital stats and nurses appearing with regular medications. I had been off the morphine pump for a while and was now taking oral pain meds as well as a plethora of other pills based on the test results from regularly extracted samples of my blood.
Late in the evening on the 4th day, I think, I began to heave and it was all fluid. I guess I had really backed up at that point. I wasn't taking in food, just drinking water, eating the occasional popsicle, and getting my nourishment from my IV. My vomiting got pretty fierce before everyone started postulating on what could be done. The solution was presented to me, an NG (nasogastric) tube. They'd run a tube into my nose and down through my esophagus into my stomach. The tube could then convey the fluid up and out into a container. I had heard of that before and at those times I thought what a horrid arrangement that seemed to be, terribly uncomfortable to install and 'wear'. However, at this time, as I could barely catch my breath and the contents of my digestive system were overflowing as vomit, I was game. I asked them to please proceed.
What a relief! Very soon I felt less and less like a water balloon. I could actually take deeper and deeper breaths. All of me was happier about more oxygen and less bloating. I was still eliminating a lot of fluid through my small intestine into the pouch too. So, draining in both directions created a remedy and more comfort very quickly. It made a huge difference in my alertness and in my entire sense of well-being.
I think maybe it was as soon as the next day, perhaps a full 24 hours, that the volume of fluid coming through the NG tube began to subside and it could be removed. That was quite a weird feeling and considerably uncomfortable but quick. I was certainly relieved to have the tube out of my nose; it had begun to irritate me. That was another sign of my recovery. I was regaining sensations, feeling more myself, although thankfully I was still receiving sufficient medications such that I was in no real pain. Any pains I had related more to maneuvering in the hospital bed or getting in and out of it as I started to empty my own pouch, having been instructed in the care and maintenance of it as soon as my thought processes were working again.
Time in the hospital was seriously warped. Although I had a great bank of windows and a nice view of the town from the 5th floor, the medications and a lot of napping made it hard for me to keep track of the days and even the hours. Everything seemed to be a schedule of techs taking vital stats and nurses appearing with regular medications. I had been off the morphine pump for a while and was now taking oral pain meds as well as a plethora of other pills based on the test results from regularly extracted samples of my blood.
Thursday, December 7, 2006
The Big Surgery
My surgery was scheduled for December 7th. I checked into the hospital the day before for prep, labwork, etc. I eventually spent two weeks in the hospital even the though the estimate had been something like six to ten days.
Once I was sedated just prior to surgery, the next few days were a blur. I was in surgery nearly four hours, so I am told. After that, I was in ICU for a couple of days. While in there, I only recall waking up for seconds at a time and seeing people, like the staff or my family members, appearing and disappearing.
I don't recall any pain at all. I do recall having trouble breathing and hearing people trying to coax me to breathe. I found this coaxing annoying. In my mind I was yelling at them. I was trying to tell them I was trying to breathe but something was crowding my lungs. It's not that I wasn't making the effort, as they seemed to be suggesting, it was that all my effort was hindered.
I do not recall being moved, but on about the third day after surgery I found myself in a regular hospital room instead of ICU. My consciousness came and went which presumably was an effect of the glorious drugs which kept me oblivious to any pain (likely a lot of morphine). When I was conscious long enough to contemplate it, I looked for my stoma and ostomy pouch.
A stoma is when a loop of intestine (small or large) is brought to the surface of the abdomen through a hole and opened so that waste can pass from it into an ostomy pouch, thus bypassing the usual path. In the temporary post-surgical instance, this is to give the surgery time to heal, aka a temporary loop ileostomy. In the permanent instance, this is the method for passing waste outside the body when the usual path is no longer available, aka a permanent colostomy.
When I was shown a video on stomas, I nearly passed out. That bit of bright red internal material pushing through a whole in the outer flesh was just too much for me to take in. I could not fathom that something from inside my body would be sticking out of my body. Furthermore, I could not believe it wouldn't be painful, I didn't care how much they reassured me that it wouldn't. To me, looking at that strawberry thing sticking out of the flesh might as well have been the raw end of a bloody bone jutting out of someone's leg and I knew that would have to be excrutiating. I had to block all of that and trust that these people knew what they were doing and meant what they said. I would just have to wait and see how it really played out.
For more details than that on stomas and ostomy apparatus, please google it.
Now my surgeon, during his briefing about the surgery, had told me that I would have a stoma and an ostomy pouch regardless of what he had to do to remove the tumor and how he had to put me back together. There would at least be a temporary ileostomy so the surgery could heal. I have already stated that a permanent colostomy was something I felt I could never abide, so I just put that whole idea off on some back burner with only a marginal link to get back to it, in case it actually happened to me.
Anyway, my primary fully-conscious first thought was "temporary or permanent?" When I was able to ask, I was happily assured that what I had was temporary and of course I was ecstatic. One of the first post-surgery jokes I made was to a medical tech taking my vitals and I told him how excited I was to know I still had an asshole!! Strange perhaps, but true.
Some days later, during a checkup visit from my surgeon, is when I really found out how complicated my surgery had been. I had already heard I was on the table about an hour longer than expected. My surgeon said that on a scale of 1 to 10 --- 10 being something he explained but I didn't understand --- my surgery was about an 8 1/2 or 9. I had no idea and I got the impression that he hadn't expected it to be quite that complicated either.
Part of the complication was removing all of the sizeable tumor and the regional nodes and getting at least a little bit into the good tissue to make sure he had all the bad. The other complication was in the reconnection. He had to construct a j-pouch from the good end of my colon which was, in my case, a handy redundant sigmoid section. Then, he had to make an opening in the j-pouch and connect it to a very slim margin at the anal sphincter. The available connection at the anus was so short that only an experienced colorectal surgery specialist would have been able to do it. A general surgeon would never have attempted it, so I have been told.
In addition to all of that of course was making sure he did not damage any other organs or structures in the area, and he had to set up the stoma. Fortunately my surgeon had called his older and even more experienced partner to assist with the entire operation and the two of them managed to get me undone, redone and put back together so that I should eventually have a mostly functional large intestine and preserved anal sphincter.
For more information on all of that, google it. I will only add that I later read up on the j-pouch and it is a viable and helpful way to construct a sort of substitute rectum or neo-rectum, serving as a reservoir for fecal matter to be eliminated, rather than a straight-line connection of colon to anus which can be more difficult when it comes to bowel movement control.
Once I was sedated just prior to surgery, the next few days were a blur. I was in surgery nearly four hours, so I am told. After that, I was in ICU for a couple of days. While in there, I only recall waking up for seconds at a time and seeing people, like the staff or my family members, appearing and disappearing.
I don't recall any pain at all. I do recall having trouble breathing and hearing people trying to coax me to breathe. I found this coaxing annoying. In my mind I was yelling at them. I was trying to tell them I was trying to breathe but something was crowding my lungs. It's not that I wasn't making the effort, as they seemed to be suggesting, it was that all my effort was hindered.
I do not recall being moved, but on about the third day after surgery I found myself in a regular hospital room instead of ICU. My consciousness came and went which presumably was an effect of the glorious drugs which kept me oblivious to any pain (likely a lot of morphine). When I was conscious long enough to contemplate it, I looked for my stoma and ostomy pouch.
A stoma is when a loop of intestine (small or large) is brought to the surface of the abdomen through a hole and opened so that waste can pass from it into an ostomy pouch, thus bypassing the usual path. In the temporary post-surgical instance, this is to give the surgery time to heal, aka a temporary loop ileostomy. In the permanent instance, this is the method for passing waste outside the body when the usual path is no longer available, aka a permanent colostomy.
When I was shown a video on stomas, I nearly passed out. That bit of bright red internal material pushing through a whole in the outer flesh was just too much for me to take in. I could not fathom that something from inside my body would be sticking out of my body. Furthermore, I could not believe it wouldn't be painful, I didn't care how much they reassured me that it wouldn't. To me, looking at that strawberry thing sticking out of the flesh might as well have been the raw end of a bloody bone jutting out of someone's leg and I knew that would have to be excrutiating. I had to block all of that and trust that these people knew what they were doing and meant what they said. I would just have to wait and see how it really played out.
For more details than that on stomas and ostomy apparatus, please google it.
Now my surgeon, during his briefing about the surgery, had told me that I would have a stoma and an ostomy pouch regardless of what he had to do to remove the tumor and how he had to put me back together. There would at least be a temporary ileostomy so the surgery could heal. I have already stated that a permanent colostomy was something I felt I could never abide, so I just put that whole idea off on some back burner with only a marginal link to get back to it, in case it actually happened to me.
Anyway, my primary fully-conscious first thought was "temporary or permanent?" When I was able to ask, I was happily assured that what I had was temporary and of course I was ecstatic. One of the first post-surgery jokes I made was to a medical tech taking my vitals and I told him how excited I was to know I still had an asshole!! Strange perhaps, but true.
Some days later, during a checkup visit from my surgeon, is when I really found out how complicated my surgery had been. I had already heard I was on the table about an hour longer than expected. My surgeon said that on a scale of 1 to 10 --- 10 being something he explained but I didn't understand --- my surgery was about an 8 1/2 or 9. I had no idea and I got the impression that he hadn't expected it to be quite that complicated either.
Part of the complication was removing all of the sizeable tumor and the regional nodes and getting at least a little bit into the good tissue to make sure he had all the bad. The other complication was in the reconnection. He had to construct a j-pouch from the good end of my colon which was, in my case, a handy redundant sigmoid section. Then, he had to make an opening in the j-pouch and connect it to a very slim margin at the anal sphincter. The available connection at the anus was so short that only an experienced colorectal surgery specialist would have been able to do it. A general surgeon would never have attempted it, so I have been told.
In addition to all of that of course was making sure he did not damage any other organs or structures in the area, and he had to set up the stoma. Fortunately my surgeon had called his older and even more experienced partner to assist with the entire operation and the two of them managed to get me undone, redone and put back together so that I should eventually have a mostly functional large intestine and preserved anal sphincter.
For more information on all of that, google it. I will only add that I later read up on the j-pouch and it is a viable and helpful way to construct a sort of substitute rectum or neo-rectum, serving as a reservoir for fecal matter to be eliminated, rather than a straight-line connection of colon to anus which can be more difficult when it comes to bowel movement control.
Friday, November 3, 2006
My Chemoradiation Side Effects
I was fortunate in that I had to endure very few side effects from either the 5FU/Leucovorin chemo or the radiation. I attribute this to 1) general good health at the start, despite having a cancerous tumor, and 2) my age which was 49 being very young for a colorectal cancer patient, and 3) quickly and actively seeking solutions as side effects developed, either by my own devices or ideas from friends/family or from web research and finally 4) both the radiation and chemo were being administered in frequent but small doses, so my body seemed to be able to manage the replenishment of normal cells dynamically, ie, with minimal impact.
It was not always clear to me which side effects were from the chemo or the radiation or both, but in all cases, I just dealt with the specific issue.
One of the first effects was actually good, in my case. Radiation and chemo can cause diarrhea. Well, after about nine months of chronic constipation, this was a great thing for me! As the weeks went on and the somewhat tubular and restrictive tumor shrank, it was all easier for me. I not only had an easier go of it (pardon the pun) but I had evidence of the shrinkage. Double bonus.
For the first four weeks out of the six, I was thrilled to not only be functioning better intestinally, but to be doing something about my cancer. It felt good to have a plan of action, to be executing it, and to see positive results. The only drawback through that point was increasing weariness, mostly likely from the chemo, but it was very gradual. I just tired a bit more easily from week to week.
The fifth week turned out to be the very worst. The cumulative effect of the radiation was starting to really burn more than just the tumor. I presume my body hit a point where it could no longer keep up with normal cell replacement or repair.
While there was no external redness on the skin of my abdomen or hips, the more sensitive tissues of the genital area were feeling quite raw. To be blunt and honest, urination felt like peeing razor blades through open blisters. It burned so badly that I actually began to cry out with every visit to the toilet. There was no complete solution to this, but I found that Desitin ointment(as for diaper rash), Vagisil (for feminine itching and burning) and Calmoseptine (a multipurpose mentholated ointment) all helped me to at least soothe the pain after urination and coated the skin to lessen contact between acidic hot liquid and tender radiation-burned flesh.
I used the ointments liberally as well as reporting the problem to the radiologist. As a result, for the remainder of the fifth week and the final sixth week, he reduced the area being irradiated, focusing more closely on the tumor. It was evident that the broader beam had done as much as my normal cells/tissues could tolerate. After this reduction and a few days of healing with aid of the ointments, I returned to nearly normal as far as bathroom activities.
The other significant side effect was loss of red blood cells. While it was never severe enough to have to postpone treatments, I was advised to take iron supplements to try to assist my body in producing more red blood cells. The main effect of this for me was a noticeable hardening and darkening of my stools, which began to put me back in a similar contipated condition, where I began. That was a little disheartenting.
The chemoradiation was over as of November 3rd. I had been warned that I might have futher side effects which would develop possibly weeks afterward. I quit taking the iron so I could at least reduce those complications. I was tired but tried to eat properly, drink plenty of fluids, and rest as much as possible so the damaged normal cells could rebuild.
In fact, the game plan included a one month haitus between chemoradiation and surgery just so my body could recover from one before being submitted to the other. This period actually turned out to be the best I'd felt in nearly a year. I was grateful.
It was not always clear to me which side effects were from the chemo or the radiation or both, but in all cases, I just dealt with the specific issue.
One of the first effects was actually good, in my case. Radiation and chemo can cause diarrhea. Well, after about nine months of chronic constipation, this was a great thing for me! As the weeks went on and the somewhat tubular and restrictive tumor shrank, it was all easier for me. I not only had an easier go of it (pardon the pun) but I had evidence of the shrinkage. Double bonus.
For the first four weeks out of the six, I was thrilled to not only be functioning better intestinally, but to be doing something about my cancer. It felt good to have a plan of action, to be executing it, and to see positive results. The only drawback through that point was increasing weariness, mostly likely from the chemo, but it was very gradual. I just tired a bit more easily from week to week.
The fifth week turned out to be the very worst. The cumulative effect of the radiation was starting to really burn more than just the tumor. I presume my body hit a point where it could no longer keep up with normal cell replacement or repair.
While there was no external redness on the skin of my abdomen or hips, the more sensitive tissues of the genital area were feeling quite raw. To be blunt and honest, urination felt like peeing razor blades through open blisters. It burned so badly that I actually began to cry out with every visit to the toilet. There was no complete solution to this, but I found that Desitin ointment(as for diaper rash), Vagisil (for feminine itching and burning) and Calmoseptine (a multipurpose mentholated ointment) all helped me to at least soothe the pain after urination and coated the skin to lessen contact between acidic hot liquid and tender radiation-burned flesh.
I used the ointments liberally as well as reporting the problem to the radiologist. As a result, for the remainder of the fifth week and the final sixth week, he reduced the area being irradiated, focusing more closely on the tumor. It was evident that the broader beam had done as much as my normal cells/tissues could tolerate. After this reduction and a few days of healing with aid of the ointments, I returned to nearly normal as far as bathroom activities.
The other significant side effect was loss of red blood cells. While it was never severe enough to have to postpone treatments, I was advised to take iron supplements to try to assist my body in producing more red blood cells. The main effect of this for me was a noticeable hardening and darkening of my stools, which began to put me back in a similar contipated condition, where I began. That was a little disheartenting.
The chemoradiation was over as of November 3rd. I had been warned that I might have futher side effects which would develop possibly weeks afterward. I quit taking the iron so I could at least reduce those complications. I was tired but tried to eat properly, drink plenty of fluids, and rest as much as possible so the damaged normal cells could rebuild.
In fact, the game plan included a one month haitus between chemoradiation and surgery just so my body could recover from one before being submitted to the other. This period actually turned out to be the best I'd felt in nearly a year. I was grateful.
Sunday, October 15, 2006
Chemoradiation Side Effects - A Primer
For any cancer treatment(s) there seem to be endless lists of side effects. The truth is that chemo is poison and the radiation is also meant to inflict damage. Both are done to damage and/or kill tissues within the body. The intent is to target the cancer, the bad cells and diseased tissues, but currently there is no way for chemo or radiation to know the difference between bad and good. As previously noted, rapid growth or more accurately rapid cell division is the main indicator but it is not a trait limited only to cancer.
Radiation is literally easier to aim as it can be focused on the tumor site but the beams go through everything in front of and behind and to either side of the tumor as well. Our bodies are packed and the pieces parts are connected or touch each other. For the moment, we can't really isolate the parts we know are bad, we can only pick the region and zap it, hoping to get just outside the diseased area to catch all the bad and do the least harm to the good.
Chemotherapy goes through the blood stream, ie, the whole body. Chemo drugs actually get into the DNA of rapidly dividing cells to disrupt the cell division. That's pretty serious widespread action at a seriously basic level. A few drugs hit the cells while resting in between cell-division, but most hit the cells while actually dividing or while the cells are in the process of replicating genes in preparation for division.
The ultimate differences between the effects on good cells and bad, as I understand them...
1) Normal cells are usually resting and not constantly growing or dividing like cancer cells, at least in adults. Normal cells tend to aggressively divide only when replacements or repairs are needed.
2) Normal cells communicate better with each other to trigger division for replication and/or repair when other similar cells have been damaged or died. But, cancer cells have not mastered this communication, so when a cancer cell is damaged, it just dies. The other cancer cells do not recognize the need to work extra to replace it. After all, they're working overtime already just dividing for themselves.
2) Chemo is much more effective on non-resting cells, being able to sneak in the door while the DNA is actively in play for replication or division.
Side effects come from damage to normal cells. Side effects usually go away after the chemo stops and the normal cells have had time to repair and replenish their numbers. Conversely, the cancer cells are just dead, which is of course the point of it all, and what makes the side effects acceptable.
Radiation is literally easier to aim as it can be focused on the tumor site but the beams go through everything in front of and behind and to either side of the tumor as well. Our bodies are packed and the pieces parts are connected or touch each other. For the moment, we can't really isolate the parts we know are bad, we can only pick the region and zap it, hoping to get just outside the diseased area to catch all the bad and do the least harm to the good.
Chemotherapy goes through the blood stream, ie, the whole body. Chemo drugs actually get into the DNA of rapidly dividing cells to disrupt the cell division. That's pretty serious widespread action at a seriously basic level. A few drugs hit the cells while resting in between cell-division, but most hit the cells while actually dividing or while the cells are in the process of replicating genes in preparation for division.
The ultimate differences between the effects on good cells and bad, as I understand them...
1) Normal cells are usually resting and not constantly growing or dividing like cancer cells, at least in adults. Normal cells tend to aggressively divide only when replacements or repairs are needed.
2) Normal cells communicate better with each other to trigger division for replication and/or repair when other similar cells have been damaged or died. But, cancer cells have not mastered this communication, so when a cancer cell is damaged, it just dies. The other cancer cells do not recognize the need to work extra to replace it. After all, they're working overtime already just dividing for themselves.
2) Chemo is much more effective on non-resting cells, being able to sneak in the door while the DNA is actively in play for replication or division.
Side effects come from damage to normal cells. Side effects usually go away after the chemo stops and the normal cells have had time to repair and replenish their numbers. Conversely, the cancer cells are just dead, which is of course the point of it all, and what makes the side effects acceptable.
Monday, October 2, 2006
Double-Checking My Team
First, I have to say that I was very satisfied with explanations I recieved from my team members and all my questions were answered fully and confidently. Even so, I went to the internet and googled all the new terms I was learning, as much as I could find out about my type and stage of cancer, all the treatments and the drug names, and I waded through proper medical info as well as patient forums to investigate my team's plan to vanquish my particular cancer.
Fortunately, I was repeatedly assured that my team had chosen the most aggressive and currently accepted game plan. It was an overwhelming second opinion and I was content to follow the prescribed actions. I have continued throughout to reverify, just in case. It seems only wise to do so.
Fortunately, I was repeatedly assured that my team had chosen the most aggressive and currently accepted game plan. It was an overwhelming second opinion and I was content to follow the prescribed actions. I have continued throughout to reverify, just in case. It seems only wise to do so.
Monday, September 25, 2006
Neoadjuvant Chemoradiation Therapy
On to the treatments...
Prior to the start of radiation therapy, and based on the location of my tumor, as well as taking into consideration all the organs and tissues in the region, the radiologist made a 3D map of the area to be irradiated. I then went for a special sort of scan and alignment marks were placed on my body, literally X'd on with a marker. A tech also drew outlines on my abdomen and hips, showing the area that would receive treatment. Additionally, they made a mold for my legs to rest in. The mold and the marks would make sure I could be perfectly positioned and remain so while radiation treatments were applied.
Then, for the next six weeks, Monday through Friday, I had an appointment at the same time of day to receive my radiation. It took longer to drive to the place than to get the treatments. With careful body positioning and the machine zapping me from top, bottom and each side, the whole process took maybe 10-15 minutes. I felt nothing. I just heard the clicks and buzzes and saw the movement of the machine around me. The techs were very friendly and I didn't have any problems at all going there 30 times for the quick treatments. I have the quantity and value of radiation I received somewhere, but I haven't felt the need to reference it.
During the same six weeks, I received chemotherapy. I only had to go in once a week and fortunately it was in the same building with the radiation lab, plus they tried to time my appointments so I could kill two birds with one stone.
My chemotherapy was Fluorouracil (5FU) and Leucovorin. It was delivered via 24/7 infusion pump, a little battery-powered device about the size of s small portable radio or big calculator. Half the machine was the pump and an LED readout showing progress of medicine delivery. The other half held the pouch of medicine which came out through a tube and went in through my port.
Each week I also had one needle stick in the arm so they could take samples for blood counts to make sure the chemo was not dangerously depleting my red blood cells, white blood cells, platelets, etc. If all my blood counts were okay, then my port was deaccessed and reaccessed to swap out one pump for another with a fresh bag of medicine therein.
So, my neoadjuvant (assistive pre-surgical) chemoradiation was six weeks, including 30 rounds of zaps and almost 1000 hours of chemo. Incidentally, because of my port and the handy pump that fit neatly into a fanny pack with the tubing under my shirt or blouse, I was totally mobile and unless I pointed it out, no one knew I was receiving chemo. I couldn't get the port area wet, like in a shower, but baths served well. I had enough tubing to hang the fanny pack up and out of the way then I could relax in the tub nearly up to the port location near my shoulder.
Prior to the start of radiation therapy, and based on the location of my tumor, as well as taking into consideration all the organs and tissues in the region, the radiologist made a 3D map of the area to be irradiated. I then went for a special sort of scan and alignment marks were placed on my body, literally X'd on with a marker. A tech also drew outlines on my abdomen and hips, showing the area that would receive treatment. Additionally, they made a mold for my legs to rest in. The mold and the marks would make sure I could be perfectly positioned and remain so while radiation treatments were applied.
Then, for the next six weeks, Monday through Friday, I had an appointment at the same time of day to receive my radiation. It took longer to drive to the place than to get the treatments. With careful body positioning and the machine zapping me from top, bottom and each side, the whole process took maybe 10-15 minutes. I felt nothing. I just heard the clicks and buzzes and saw the movement of the machine around me. The techs were very friendly and I didn't have any problems at all going there 30 times for the quick treatments. I have the quantity and value of radiation I received somewhere, but I haven't felt the need to reference it.
During the same six weeks, I received chemotherapy. I only had to go in once a week and fortunately it was in the same building with the radiation lab, plus they tried to time my appointments so I could kill two birds with one stone.
My chemotherapy was Fluorouracil (5FU) and Leucovorin. It was delivered via 24/7 infusion pump, a little battery-powered device about the size of s small portable radio or big calculator. Half the machine was the pump and an LED readout showing progress of medicine delivery. The other half held the pouch of medicine which came out through a tube and went in through my port.
Each week I also had one needle stick in the arm so they could take samples for blood counts to make sure the chemo was not dangerously depleting my red blood cells, white blood cells, platelets, etc. If all my blood counts were okay, then my port was deaccessed and reaccessed to swap out one pump for another with a fresh bag of medicine therein.
So, my neoadjuvant (assistive pre-surgical) chemoradiation was six weeks, including 30 rounds of zaps and almost 1000 hours of chemo. Incidentally, because of my port and the handy pump that fit neatly into a fanny pack with the tubing under my shirt or blouse, I was totally mobile and unless I pointed it out, no one knew I was receiving chemo. I couldn't get the port area wet, like in a shower, but baths served well. I had enough tubing to hang the fanny pack up and out of the way then I could relax in the tub nearly up to the port location near my shoulder.
Friday, September 22, 2006
Chemo Port or Port-a-Cath
Before I began any treatments I was given options for how the chemo would be administererd. I could be injected as with normal shots, or a temporary catheter could be placed in my arm or chest for one or several treatments. I think that sort of thing leaves a tube hanging out of your arm or chest which must be safe-guarded until the chemo is over and it's removed. In any case, I didn't like the sound of these options. Medical people have had trouble finding and hitting my veins, so I certainly didn't want to be going through that any more than necessary. I was also a bit squeemish and concerned about the prospect of some tube hanging out of me.
Last, but most definitely best, in my opinion, was the option to have a 'port-a-cath' aka 'port' installed. While this required surgery, it was minor surgery and the port would be under my skin, unseen, except for a flat, rounded bump about the size of a button. The port is an access point which feeds a catheter tube that is inserted into a superior vein so the chemicals could be fed directly into my bloodstream. Again, all of this would be invisible to me.
Everytime the port is 'accessed', a special needle is inserted into the center of the port 'button' then all IV medications can be applied as needed from that one needle stick through an attached tube. I liked that whole idea much better. As I understood it, the port could be left in place for years, if need be.
So I picked the port option and my surgeon installed it. The only discomfort I had was from the small incision and the fact that the port is sewn to a muscle to anchor it so it doesn't move around under the skin. For a few days it just felt like I had pulled a muscle in my shoulder from lifting or throwing something too heavy.
Thus, I have a small bump high on my chest, near my left shoulder, which is barely noticeable. With the proper topical anesthetic and a numbing lidocaine injection near the port, I don't even feel the special needle going into the device, nor do I feel any of the delivery of medicine through that line. MUCH better than a lot of needle sticks or a waggling tube hanging out of a hole in my skin.
Last, but most definitely best, in my opinion, was the option to have a 'port-a-cath' aka 'port' installed. While this required surgery, it was minor surgery and the port would be under my skin, unseen, except for a flat, rounded bump about the size of a button. The port is an access point which feeds a catheter tube that is inserted into a superior vein so the chemicals could be fed directly into my bloodstream. Again, all of this would be invisible to me.
Everytime the port is 'accessed', a special needle is inserted into the center of the port 'button' then all IV medications can be applied as needed from that one needle stick through an attached tube. I liked that whole idea much better. As I understood it, the port could be left in place for years, if need be.
So I picked the port option and my surgeon installed it. The only discomfort I had was from the small incision and the fact that the port is sewn to a muscle to anchor it so it doesn't move around under the skin. For a few days it just felt like I had pulled a muscle in my shoulder from lifting or throwing something too heavy.
Thus, I have a small bump high on my chest, near my left shoulder, which is barely noticeable. With the proper topical anesthetic and a numbing lidocaine injection near the port, I don't even feel the special needle going into the device, nor do I feel any of the delivery of medicine through that line. MUCH better than a lot of needle sticks or a waggling tube hanging out of a hole in my skin.
Wednesday, September 20, 2006
Determining Cancer Stage
The inital assessment was Stage III due to the size of my tumor, however, there are two other important staging factors: (lymph) node involement, and metastic spread. After reviewing xrays, bloodwork, CT scans, and an ultrasound, it was determined that my cancer was Stage III, particularly T3N1M0.
T3: T is the extent to which the cancer or tumor has grown and possibly invaded the surrounding area. My T3 meant that the tumor had grown completely into the layers and through walls of the rectum but not into nearby organs or tissues.
N1: N refers to lymph node involvement. N1 means one to three lymph nodes in the area may be involved. There are lymph nodes all over the body and since they communicate with each other it is sadly common for them to 'transmit' cancer to other parts of the body. I don't know how this works, but I think that's the gist of it. Any cancer is more serious if lymph nodes are involved. In my case, only one of the several lymph nodes in the rectal area appeared to be enlarged and was therefore suspect.
M0: Metastic disease, ie spread of cancer. A primary cancer is said to have metastasized if cancer has begun to appear in another organ or areas of the body, particularly at some distance, such as a patient who has rectal cancer as well as kidney or lung cancer. In my case, there was no evidence of cancer anywhere else.
T3: T is the extent to which the cancer or tumor has grown and possibly invaded the surrounding area. My T3 meant that the tumor had grown completely into the layers and through walls of the rectum but not into nearby organs or tissues.
N1: N refers to lymph node involvement. N1 means one to three lymph nodes in the area may be involved. There are lymph nodes all over the body and since they communicate with each other it is sadly common for them to 'transmit' cancer to other parts of the body. I don't know how this works, but I think that's the gist of it. Any cancer is more serious if lymph nodes are involved. In my case, only one of the several lymph nodes in the rectal area appeared to be enlarged and was therefore suspect.
M0: Metastic disease, ie spread of cancer. A primary cancer is said to have metastasized if cancer has begun to appear in another organ or areas of the body, particularly at some distance, such as a patient who has rectal cancer as well as kidney or lung cancer. In my case, there was no evidence of cancer anywhere else.
Tuesday, September 19, 2006
Meeting with My Team
Each team member, due to their specialties, gave me a different angle on my condition. Though I met with them individually, these doctors had worked together for a while, so the picture they were painting was cohesive, yet each one was focused on a particular aspect.
As I understand it, the surgeon is the lead. The biggest goal was to get the cancer out of my body. In support of this goal, I would have chemoradiotherapy, ie, both chemo and radiation, concurrently. This is referred to as neoadjuvant because mine was advanced and rather large, he would have to remove the entire rectum and then reconnect the good end of the colon directly to the anal sphincter (coloanal resection). IF that was successful, there would obviously be changes in my bowel function, as the rectum is a sort of reservoir and provides most of the cues and voluntary muscle control for proper/normal waste elimination.
Furthermore, the surgeon cautioned that because the tumor was very close to the anal sphincter, it was very possible that a coloanal resection would not work and I would have to have an abdominoperineal resection (APR) which meant the removal of the rectum and anus, which further meant a permanent colostomy. I understood that. I therapy, as in pre-surgical, assistive therapy.
The radiologist would use his technology to kill off and shrink the tumor as much as possible, thus stopping any spread of the disease and making it easier for the surgeon to remove. The chemotherapist's goal was to weaken cancer cells to make them more susceptible to the radiation. So, it was a layered attack.
The surgeon's assessment was cautious. He made me aware of the possibilities. Yes, he may be able to completely excise (surgically remove) the rectal cancer. However, would be 'bagged' for life, and in my mind, mutilated. I really could not dwell on that or I would lose it. That was the very worst thing I could think of to ever happen to me. Honestly, given a choice, I'd rather sacrifice a limb, I thought.
The meeting with the radiologist was easier to take. I like technology and I easily got the gist of what he could do. Radiation would be beamed into the diseased area and kill off the cells there. As the tumor, or parts of it died, it would presumably shrink and become easier to remove later. The cautions here were that the radiation could not tell the difference between good tissue and bad, plus the rectum is located where other important and sensitive organs reside. The entire region would be irradiated and thus affected. The extent of effects on good tissue depend on the amount of radiation I'd receive and my own body. Each person is different, though it was clear there would be side effects as damage was done to good tissue as well as bad.
The chemo fellow sort of repeated part of the warnings. Cancer treatment chemicals injected into the body are intended to kill cells, usually rapidly-growing cells, the main indicator that they are cancerous. Cancer cells are what they are because they don't know how or when to stop growing like normal cells. Alas, there are lots of other cells in the body, normal cells, that are also fast-growing and these would be killed off or damaged as well. For instance, red blood cells (RBCs) are usually a concern. They reproduce rapidly so the chemo targets them. But of course we normally produce a lot of RBCs because we need a lot of them. They carry oxygen through the body, which is obviously important. Anemia, ie diminished RBCs, easily wears a person out because there just isn't enough oxygen being circulated.
As I understand it, the surgeon is the lead. The biggest goal was to get the cancer out of my body. In support of this goal, I would have chemoradiotherapy, ie, both chemo and radiation, concurrently. This is referred to as neoadjuvant because mine was advanced and rather large, he would have to remove the entire rectum and then reconnect the good end of the colon directly to the anal sphincter (coloanal resection). IF that was successful, there would obviously be changes in my bowel function, as the rectum is a sort of reservoir and provides most of the cues and voluntary muscle control for proper/normal waste elimination.
Furthermore, the surgeon cautioned that because the tumor was very close to the anal sphincter, it was very possible that a coloanal resection would not work and I would have to have an abdominoperineal resection (APR) which meant the removal of the rectum and anus, which further meant a permanent colostomy. I understood that. I therapy, as in pre-surgical, assistive therapy.
The radiologist would use his technology to kill off and shrink the tumor as much as possible, thus stopping any spread of the disease and making it easier for the surgeon to remove. The chemotherapist's goal was to weaken cancer cells to make them more susceptible to the radiation. So, it was a layered attack.
The surgeon's assessment was cautious. He made me aware of the possibilities. Yes, he may be able to completely excise (surgically remove) the rectal cancer. However, would be 'bagged' for life, and in my mind, mutilated. I really could not dwell on that or I would lose it. That was the very worst thing I could think of to ever happen to me. Honestly, given a choice, I'd rather sacrifice a limb, I thought.
The meeting with the radiologist was easier to take. I like technology and I easily got the gist of what he could do. Radiation would be beamed into the diseased area and kill off the cells there. As the tumor, or parts of it died, it would presumably shrink and become easier to remove later. The cautions here were that the radiation could not tell the difference between good tissue and bad, plus the rectum is located where other important and sensitive organs reside. The entire region would be irradiated and thus affected. The extent of effects on good tissue depend on the amount of radiation I'd receive and my own body. Each person is different, though it was clear there would be side effects as damage was done to good tissue as well as bad.
The chemo fellow sort of repeated part of the warnings. Cancer treatment chemicals injected into the body are intended to kill cells, usually rapidly-growing cells, the main indicator that they are cancerous. Cancer cells are what they are because they don't know how or when to stop growing like normal cells. Alas, there are lots of other cells in the body, normal cells, that are also fast-growing and these would be killed off or damaged as well. For instance, red blood cells (RBCs) are usually a concern. They reproduce rapidly so the chemo targets them. But of course we normally produce a lot of RBCs because we need a lot of them. They carry oxygen through the body, which is obviously important. Anemia, ie diminished RBCs, easily wears a person out because there just isn't enough oxygen being circulated.
Thursday, September 14, 2006
In the Beginning...
I got the news on September 14th, 2006. Immediately after the diagnosis, and I mean, the very next week, I had an oncology team and met with each member to learn about my condition and the game plan. My team consisted of a colorectal surgeon, a radiology oncologist and a medical (chemo) oncologist. I was also fortunate that the assistant to my gastroenterologist, having been the one to tell me of my diagnosis and upon discovering other difficult life circumstances I had, volunteered to be my companion through these initial meetings and to assist me in any way I needed as the plan progressed. She was invaluable and I am ever so grateful to her for the time she devoted to me and for her additional expertise.
I highly recommend that anyone going through this sort of thing should have such a companion, someone who can go with you to appointments and be a second set of ears, someone who can be available at nearly anytime for anything, even just for venting about the situation. Whether or not you make full use of such a person, it is a great comfort to know they are there. I actually found it helpful that my companion was not a previous friend or family member. She could retain her perspective and help me keep a handle on mine.
I highly recommend that anyone going through this sort of thing should have such a companion, someone who can go with you to appointments and be a second set of ears, someone who can be available at nearly anytime for anything, even just for venting about the situation. Whether or not you make full use of such a person, it is a great comfort to know they are there. I actually found it helpful that my companion was not a previous friend or family member. She could retain her perspective and help me keep a handle on mine.
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