Becca's Letter to Her Friends
August 21, 2010
The surgery they are proposing to me is known as Total Pelvic Exenteration. And yes...it's as extreme as it sounds. Google it, I promise you hours of agonizing fun as you read about things being done to a person that perhaps previously you may have thought was only something possible in the plot of a really, really bad low-budget sci-fi movie.
Surgery (if it's even possible for me) would involve complete removal of everything starting from the entire vagina, cervix, uterus, ovaries, fallopian tubes, aaaaannnd (drum roll please) bladder. Naturally, the question of how does one pee after that's removed comes up. The answer to that would be a urostomy. For those in the know, that would mean Ii would have two, count em, TWO stoma's on my abdomen. However, as some of you are aware of, the urostomy you actually have to wear a bag to collect the urine. The urostomy is created by using a piece of your large intestine, or maybe your small intestine, connecting that to your ureters to your kidneys. Fun times right? The catch is - I don't have large intestine. AND my small intestine is already in use for my current pouch. There is an option for a urostomy which would be a lot like what I have for my lost colon, which would be an internal pouch that you stick a catheter in to get the urine out. Hey...I already have something like that...that ain't too bad right? Oh...but wait...again, my intestine is already in use.
What's a girl to do? Guess I'm screwed. Hey, pissing is overrated right?
An option they did think about was maybe just pull the ureters from both kidneys out through either side of my back and attaching nephrostomy bags off each side. So that would give me three, count em, THREE ostomies. One in front, and two in back. How cute.
Now, I'm getting ahead of myself here b/c that would of course only be permitting that I'm actually even able to have this surgery, given how completely complicated my insides are right now (what with all the radiation and the scar tissue and whatever the cancer has done). AND if I do have it, I have to actually survive it. Pretty intense surgery, pretty all-encompassing major and pretty high mortality rates. AND if I do survive it, it's a tremendously long recovery time. Considering you were just gutted like a fish.
I don't know if I have a whole lot of time to really debate all of this. It's been presented to me that this new crop of cancer showing up, while not optimal, is making them re-look at a surgery that I turned down years ago...I don't want to wait around to the point where I may NOT be eligible for surgery at all. My oncologist had an interesting perspective for me to take on this all. To him, I should actually think of it as "a second chance of sorts". Because it is strongly believed that whatever cyberknife did, or will potentially do for me, is decidedly NOT going to be "curative". So the GYN surgeon working with my oncologist and me right now has told my oncologist that he feels if I had this surgery I would have a 50/50 chance at cure.
The other caveat is that if I DO have this surgery, and perhaps all the cancer is not cut out, and down the line something pops up again in there...well now I am truly screwed b/c now there isn't anything left to cut out. Le sigh.
I am talking with cyberknife doc to see if there's ANYTHING they can do prior to me agreeing to surgery. But the hopes are not very high for that. Ultimately, I foresee some surgery in the very near future -perhaps by the end of the month, if I'm lucky.
I hate having to write these stupid emails. All of you that know me, know that I always lay things on the line as they are. So, I'll give you the option to just read the basic info I'm trying to get across. Or, to read further if you want to know the specifics
Seems as of late, despite all better efforts, cancer of some sort (whether its from the original stuff I've been fighting on the cervix that has moved lower down, OR new cancer that's grown big enough to be seen, who knows at this point) has been biopsied and came back positive. That is not to say the cyberknife treatment I went through did not do anything. But it was only treating a tiny specific area. THIS seems to be outside of that area. If you care to learn a whole lot about your friend Becca's personal parts, keep reading. If you are squeamish about words such as vagina or urine, stop reading now and just pray/think/hope for a miracle for me. Cuz that's pretty much what I need now
(also fair warning - I'm pretty angry at this point in time, while typing this).
.
.
.
.
.
.
.
.
.
As I mentioned, it's lower down from cervix, in the vagina. There are actual symptoms which drove me into the doctor over and over to beat them over the head until they started to figure out why I've been so uncomfortable. So needless to say, I've not been a happy nor comfortable camper as of late, or at the present time. I've been struggling for a couple weeks now on what to do with the information that I knew was coming, since I was already pretty certain that whatever was bothering me wasn't going to be good. However now that I have actual concrete test results, I guess I don't need to struggle with that part.
Surgery (if it's even possible for me) would involve complete removal of everything starting from the entire vagina, cervix, uterus, ovaries, fallopian tubes, aaaaannnd (drum roll please) bladder. Naturally, the question of how does one pee after that's removed comes up. The answer to that would be a urostomy. For those in the know, that would mean Ii would have two, count em, TWO stoma's on my abdomen. However, as some of you are aware of, the urostomy you actually have to wear a bag to collect the urine. The urostomy is created by using a piece of your large intestine, or maybe your small intestine, connecting that to your ureters to your kidneys. Fun times right? The catch is - I don't have large intestine. AND my small intestine is already in use for my current pouch. There is an option for a urostomy which would be a lot like what I have for my lost colon, which would be an internal pouch that you stick a catheter in to get the urine out. Hey...I already have something like that...that ain't too bad right? Oh...but wait...again, my intestine is already in use.
What's a girl to do? Guess I'm screwed. Hey, pissing is overrated right?
An option they did think about was maybe just pull the ureters from both kidneys out through either side of my back and attaching nephrostomy bags off each side. So that would give me three, count em, THREE ostomies. One in front, and two in back. How cute.
Now, I'm getting ahead of myself here b/c that would of course only be permitting that I'm actually even able to have this surgery, given how completely complicated my insides are right now (what with all the radiation and the scar tissue and whatever the cancer has done). AND if I do have it, I have to actually survive it. Pretty intense surgery, pretty all-encompassing major and pretty high mortality rates. AND if I do survive it, it's a tremendously long recovery time. Considering you were just gutted like a fish.
I don't know if I have a whole lot of time to really debate all of this. It's been presented to me that this new crop of cancer showing up, while not optimal, is making them re-look at a surgery that I turned down years ago...I don't want to wait around to the point where I may NOT be eligible for surgery at all. My oncologist had an interesting perspective for me to take on this all. To him, I should actually think of it as "a second chance of sorts". Because it is strongly believed that whatever cyberknife did, or will potentially do for me, is decidedly NOT going to be "curative". So the GYN surgeon working with my oncologist and me right now has told my oncologist that he feels if I had this surgery I would have a 50/50 chance at cure.
The other caveat is that if I DO have this surgery, and perhaps all the cancer is not cut out, and down the line something pops up again in there...well now I am truly screwed b/c now there isn't anything left to cut out. Le sigh.
I am talking with cyberknife doc to see if there's ANYTHING they can do prior to me agreeing to surgery. But the hopes are not very high for that. Ultimately, I foresee some surgery in the very near future -perhaps by the end of the month, if I'm lucky.
I hate having to write these stupid emails. All of you that know me, know that I always lay things on the line as they are. So, I'll give you the option to just read the basic info I'm trying to get across. Or, to read further if you want to know the specifics
Seems as of late, despite all better efforts, cancer of some sort (whether its from the original stuff I've been fighting on the cervix that has moved lower down, OR new cancer that's grown big enough to be seen, who knows at this point) has been biopsied and came back positive. That is not to say the cyberknife treatment I went through did not do anything. But it was only treating a tiny specific area. THIS seems to be outside of that area. If you care to learn a whole lot about your friend Becca's personal parts, keep reading. If you are squeamish about words such as vagina or urine, stop reading now and just pray/think/hope for a miracle for me. Cuz that's pretty much what I need now
(also fair warning - I'm pretty angry at this point in time, while typing this).
.
.
.
.
.
.
.
.
.
As I mentioned, it's lower down from cervix, in the vagina. There are actual symptoms which drove me into the doctor over and over to beat them over the head until they started to figure out why I've been so uncomfortable. So needless to say, I've not been a happy nor comfortable camper as of late, or at the present time. I've been struggling for a couple weeks now on what to do with the information that I knew was coming, since I was already pretty certain that whatever was bothering me wasn't going to be good. However now that I have actual concrete test results, I guess I don't need to struggle with that part.
