I met with my oncologist today. He informed me that he spoke with the surgeon that I want to do my surgery and they both agreed that the best course of action was removing the entire colon. They figure that there is something in me that caused the dual primary tumors and that leaving any of the colon is essentially playing with fire.
This is a little contradictory to what the surgeon originally told me, as she seemed to originally recommend only partial removal of the colon with annual colonoscopies. Not the story seems to have changed.
My options basically are:
1) an ilestomy bag
2) a continent ileostomy
3) partial removal of the colon
Option #3 is dangerous because it increases the recurrence of more caner. Option #1 sounds just awful ad Option #2 doesn't sound much better than #1.
I think the decision is up to me. All the options suck and I don't know what to do.
Monday, June 29, 2009
Tuesday, June 16, 2009
Round #5
After my awesome week off, I went back for treatment yesterday. Since I had the extra week between treatments most of my side-effects had faded and so far this chemo hasn't been too bad.
I have the 5FU pump with me 'til tomorrow morning. Normally I will sleep as much as possible when I have the pump, but I think that's partially to be blamed for the anti-nausea medicine. So far I haven't taken any today even though I had a hardy lunch.
Still no word on the date of my surgery. I'm keeping my fingers crossed that since I'm responding so well to chemo that maybe, just maybe, I won't even need surgery. It's a long shot and probably wishful thinking, but you never know.
I have the 5FU pump with me 'til tomorrow morning. Normally I will sleep as much as possible when I have the pump, but I think that's partially to be blamed for the anti-nausea medicine. So far I haven't taken any today even though I had a hardy lunch.
Still no word on the date of my surgery. I'm keeping my fingers crossed that since I'm responding so well to chemo that maybe, just maybe, I won't even need surgery. It's a long shot and probably wishful thinking, but you never know.
Tuesday, June 9, 2009
Week Off
I went to the cancer center yesterday, the same one I always go to for treatment and was prepared to spend the next three days sleeping.
They accessed my port, as always and ran a CBC. Turns out that my neutrophil count was so low (~.5) that they decided to delay my treatment for a week. After all the begging I did of my oncologist, I ended up getting the week off treatment anyway!
I'm quite happy about this, though it's unfortunate that my counts are so low. I just need to be careful to stay away from germy people and things. But I feel great and I'm glad I have a few extra days to get the still remaining toxicity out of my system.
It'll be a good week, I hope.
They accessed my port, as always and ran a CBC. Turns out that my neutrophil count was so low (~.5) that they decided to delay my treatment for a week. After all the begging I did of my oncologist, I ended up getting the week off treatment anyway!
I'm quite happy about this, though it's unfortunate that my counts are so low. I just need to be careful to stay away from germy people and things. But I feel great and I'm glad I have a few extra days to get the still remaining toxicity out of my system.
It'll be a good week, I hope.
Sunday, May 31, 2009
ER
I went to the ER on Friday night with "severe abdominal pain". It was not my choice to go to the ER, but when I called my oncologist he instructed me that they needed to do a scan to make sure I wasn't having a blockage.
What I thought would be a few hours ended up taking up most of my weekend. I was just released from the hospital this morning. Luckily it was none too serious. The pain in my abdomen went away on its own after a couple of bowel movements.
Also, the CT scan I received confirmed that I am responding to the chemo. Both my tumors have shrank, which is excellent news.
I had never spent the night in the hospital so it was a bit unsettling. Luckily it wasn't too horrible. Though when my doctor told me he would release this morning, I was ecstatic.
It's good to be home.
What I thought would be a few hours ended up taking up most of my weekend. I was just released from the hospital this morning. Luckily it was none too serious. The pain in my abdomen went away on its own after a couple of bowel movements.
Also, the CT scan I received confirmed that I am responding to the chemo. Both my tumors have shrank, which is excellent news.
I had never spent the night in the hospital so it was a bit unsettling. Luckily it wasn't too horrible. Though when my doctor told me he would release this morning, I was ecstatic.
It's good to be home.
Tuesday, May 26, 2009
Round #4
I started round #4 this morning with a digital rectal exam from the oncologist. He's a busy man and didn't even remember examining me the first time, which makes me wonder. But he reviewed his notes, stuck his finger inside me and said that the rectal tumor had definitely shrunk.
This was very good news and says that the chemo is working. I had suspected this all along as I was seeing improvements in my bowels and in other areas. I was happy but not completely ecstatic. I'm not sure why. Perhaps it's a cautious optimism.
I asked him about inserting a week between this treatment and the next one, but he said if it was just a matter of toxicity that he'd rather not. Of course, it's my body and my treatment and I have the right to do what I want -- but I'll stick with his advice for now.
It's Tuesday afternoon and I've been sleeping a lot. I have the pump with me and I just prefer to sleep when it's with me. Then I don't have to deal with it as much.
Time to go lay in my bed for another couple hours.
This was very good news and says that the chemo is working. I had suspected this all along as I was seeing improvements in my bowels and in other areas. I was happy but not completely ecstatic. I'm not sure why. Perhaps it's a cautious optimism.
I asked him about inserting a week between this treatment and the next one, but he said if it was just a matter of toxicity that he'd rather not. Of course, it's my body and my treatment and I have the right to do what I want -- but I'll stick with his advice for now.
It's Tuesday afternoon and I've been sleeping a lot. I have the pump with me and I just prefer to sleep when it's with me. Then I don't have to deal with it as much.
Time to go lay in my bed for another couple hours.
Friday, May 22, 2009
My Portacath
I spent 2008 losing a lot of weight which I'm kinda now regretting because the portacath stands out a lot.
The portacath was "installed" in April and has actually been very useful. When I go in for chemo, it saves the trouble of having to use a vein for the IV.
For family and friends I haven't seen in a while, you can see part of the tattoo on my right arm that is still incomplete. Unfortunately, I won't be getting tattoed again until I've recovered from my cancer.
Here's a couple pics of the other tattos I recently got. The one on my right arm and on my left side are still incomplete. This has nothing to do with my cancer, I just want to show 'em. :)
Friday, May 15, 2009
Recovering from #3
The last round of chemo was a little rough. It wasn't as bad as round #2 mainly because I had no fever or flu like symptoms this time around. That's a good thing (thanks Martha).
If anything it seems that this time around was a little 'easier' than the previous two rounds. Not that any of this is easy. But there was very little nausea, so little that I only took my anti-nausea medication four times (maybe five?).
The main thing this time around was fatigue. Monday, Tuesday and Wednesday I slept more than I was awake. By Thursday, yesterday, I was ok but still tired. I managed to go to work for a few hours and came home and napped for a few more.
Today I can still feel the chemicals in me and I can still feel a little fatigue but for the most part it's manageable and I'm able to ignore it.
On the bright side I'm fairly certain the chemo is working. Things are thicker then they have been in a long time and they pass a lot easier as well. There's no blood anymore, which is a drastic change, as I was seeing blood just about every time I went to the bathroom. Also, for about a year and change I had a slight pain in my stomach near my cecum (which I eventually found out was another tumor (I have two in my colon)) which I haven't felt for about two weeks or more.
My next round of chemo is the Tuesday after Memorial Day. This will include a digital exam (ie. the doc will be sticking a finger up me) which the doctor will hopefully be able to determine if the tumor near my rectum has shrank.
I've realized so far through this that I don't like a lot of the terminology that the "cancer society" (people with cancer) have adopted. For example, I don't see this as a "battle against cancer" and I hate hate hate it when people die from cancer and it's referred to as "so-and-so lost their battle against cancer".
This almost seems to personify cancer, as though it's a sentient thing actively attacking you. In actuality it's just a malfunction of the body. A horrible and terrible malfunction, but one nonetheless. I'm not battling anything. I'm getting treated to fix something in my body that has gone wrong. It's not a battle, it's not a fight, it's an illness. And it's curable.
If anything it seems that this time around was a little 'easier' than the previous two rounds. Not that any of this is easy. But there was very little nausea, so little that I only took my anti-nausea medication four times (maybe five?).
The main thing this time around was fatigue. Monday, Tuesday and Wednesday I slept more than I was awake. By Thursday, yesterday, I was ok but still tired. I managed to go to work for a few hours and came home and napped for a few more.
Today I can still feel the chemicals in me and I can still feel a little fatigue but for the most part it's manageable and I'm able to ignore it.
On the bright side I'm fairly certain the chemo is working. Things are thicker then they have been in a long time and they pass a lot easier as well. There's no blood anymore, which is a drastic change, as I was seeing blood just about every time I went to the bathroom. Also, for about a year and change I had a slight pain in my stomach near my cecum (which I eventually found out was another tumor (I have two in my colon)) which I haven't felt for about two weeks or more.
My next round of chemo is the Tuesday after Memorial Day. This will include a digital exam (ie. the doc will be sticking a finger up me) which the doctor will hopefully be able to determine if the tumor near my rectum has shrank.
I've realized so far through this that I don't like a lot of the terminology that the "cancer society" (people with cancer) have adopted. For example, I don't see this as a "battle against cancer" and I hate hate hate it when people die from cancer and it's referred to as "so-and-so lost their battle against cancer".
This almost seems to personify cancer, as though it's a sentient thing actively attacking you. In actuality it's just a malfunction of the body. A horrible and terrible malfunction, but one nonetheless. I'm not battling anything. I'm getting treated to fix something in my body that has gone wrong. It's not a battle, it's not a fight, it's an illness. And it's curable.
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